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Department papers of the month

Each month we list the papers published by members of the department/division. You can also view all our publications via the King's research portal.

In addition, every month a member of our division selects an external paper of the month  relevant to our research.  Please click on the link to view their choices.

2018

 

March

Featured Publication: 

Etkind SN, Bone AE, Lovell N, Higginson IJ, Murtagh FEM. Influences on care preferences of older people with advanced illness: A systematic review and thematic synthesis. JAGS 2017 (published online ahead of print. doi:10.1111/jgs.15272

This synthesis of qualitative and quantitative literature develops a framework of how older peoples care preferences may be influenced in the context of advanced illness, providing new information that can be used to develop more responsive and person centred models of care. Preferences are strongly influenced by the family and care context, whilst individual and illness factors are also important. Based on these findings it is important for clinicians to consider patients and their families together as a unit of care when considering preferences. Evidence regarding what influences the stability of preferences is lacking, representing a key target for further research.

Other papers in peer reviewed journals: 

Medvedev ON, Turner-Stokes L, Ashford S, Siegert RJ. Rasch analysis of the UK Functional Assessment Measure in patients with complex disability after stroke. Journal of rehabilitation medicine 2018; 10.2340/16501977-2324.

 Marshall S, Grinyer A, Limmer M. The 'lost tribe' reconsidered: Teenagers and young adults treated for cancer in adult settings in the UK. European journal of oncology nursing : the official journal of European Oncology Nursing Society 2018; 33: 85-90.

 Kinley J, Hockley J, Stone L, Brazil K. Family perceptions of care at the end of life in UK nursing care homes. Journal of Research in Nursing 2018; https://doi.org/10.1177/1744987117753276.

Guo P, Dzingina M, Firth AM, Davies JM, Douiri A, O'Brien SM, Pinto C, Pask S, Higginson IJ, Eagar K, Murtagh FEM. Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol. BMJ open 2018; 8(3): e020071.

Ashford S, Williams H, Nair A, Orridge S, Turner-Stokes L. Categorisation of goals set using Goal Attainment Scaling for treatment of leg spasticity: a multicentre analysis. Disability and rehabilitation 2018; 10.1080/09638288.2018.1451927: 1-6.

 Kinley J, Stone L, Butt A, Kenyon B, Lopes NS. Developing, implementing and sustaining an end-of-life care programme in residential care homes. International journal of palliative nursing 2017; 23(4): 186-93.

Evans CJ, Ison L, Ellis-Smith C, Nicholson C, Costa A, Oluyase AO, Namisango E, Bone AE, Brighton LJ, Yi D, Combers S, Bajwah S, Gao W, Harding R, HigginsonIJ and Maddocks M. Rapid Scoping Review of Service Delivery Models to Maximise Quality of Life for Older People at the End of Life. 20th March 2018 http://www.who.int/kobe_centre/mediacentre/news/EOLC_report/en/

Ashford S, Nair A, Williams H, Esdon J, Steed A, Nyein C, Turner-Stokes L, (In-press) Spasticity management with botulinum toxin: A comparison of outcome from physiotherapy and medical injectors. International Journal of Therapy and Rehabilitation.

Turner-Stokes L, Ashford S, Baguley B, Barnes B, Esquenazi A, Francisco G, Gracies JM, Lains J, Suputtitada A, Serrano S, Ward A W, Simpson D M. (2018) Applying a comprehensive patient-centered approach to adult spastic paresis: consensus framework. European Journal of Physical and Rehabilitation Medicine. DOI 10.23736/S1973-9087.17.04808-0. On-line.

Royal College of Physicians, British Society of Rehabilitation Medicine, The Chartered Society of Physiotherapy, Association of Chartered Physiotherapists Interested in Neurology and the Royal College of Occupational Therapists. (2018) Spasticity in adults: management using botulinum toxin. National guidelines. London: Royal College of Physicians. S Ashford (editor) ; L Turner-Stokes; R Allison, L Duke; P Moore; G Bavikatte; S Kirker, A Ward, D Bilton

Ishida E, Onishi H, Morita T, Uchitomi Y, Shimizu M, Tsuneto S, Shima Y, Miyashita M. Communication Disparity between Bereaved and Others: What Hurts Them and What is Unhelpful? - A Nationwide Study of the Cancer Bereaved. J Pain Symptom Manage. 2018 Apr; 55(4): 1061-7.

Aoyama M, Sakaguchi Y, Morita T, Ogawa A, Fujisawa D, Kizawa Y, Tsuneto S, Shima Y, Miyashita M. Factors associated with possible complicated grief and major depressive disorders. Psychooncology. 2018 Mar; 27(3): 915-21.

Mori M, Yoshida S, Shiozaki M, Morita T, Baba M, Aoyama M, Kizawa Y, Tsuneto S, Shima Y, Miyashita M. "What I Did for My Loved One Is More Important than Whether We Talked About Death": A Nationwide Survey of Bereaved Family Members. J Palliat Med. 2018 Mar;.335-41.

Siegert RJ, Medvedev O, Turner-Stokes L. Dimensionality and scaling properties of the Patient Categorisation Tool in patients with complex rehabilitation needs  following acquired brain injury. J Rehabil Med. 2018 Mar 27. doi: 10.2340/16501977-2327.

Turner-Stokes L, Krägeloh CU, Siegert RJ. The patient categorisation tool:psychometric evaluation of a tool to measure complexity of needs for rehabilitation in a large multicentre dataset from the United Kingdom. Disabil Rehabil. 2018 Jan 18:1-9. doi: 10.1080/09638288.2017.1422033 

February

Featured publication: 

Pask S, Pinto C, Bristowe K, van Vliet L, Nicholson C, Evans CJ, George R, Bailey K, Davies JM, Guo P, Daveson BA, Higginson IJ, Murtagh FE. A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals. Palliative Medicine. 2018 Feb 1:269216318757622. doi: 10.1177/0269216318757622. [Epub ahead of print] PubMed PMID: 29457743. http://journals.sagepub.com/doi/abs/10.1177/0269216318757622

 In this paper, we present a conceptual framework for complexity in palliative care developed from the perspectives of patients, family members and professionals. We found that complexity extended far beyond the commonly used physical, psychological, social and spiritual domains, and included how patients interact with family/professionals, how services’ respond to needs and societal perspectives on care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

Other papers in peer reviewed journals:

Bayly J, Wakefield D, Hepgul N, Wilcock A, Higginson IJ, Maddocks M. Changing health behaviour with rehabilitation in thoracic cancer: a systematic review and synthesis. Psycho-oncology. 201810.1002/pon.4684.

West E, Onwuteaka-Philipsen B, Philipsen H, Higginson IJ, Pasman HRW. "Keep All Thee 'Til the End": Reclaiming the Lifeworld for Patients in the Hospice Setting. Omega (Westport). 2017 Jan 1:30222817697040.

Solheim TS, Laird BJA, Balstad TR, Bye A, Stene G, Baracos V, Strasser F, Griffiths G, Maddocks M, Fallon M, Kaasa S, Fearon K. Cancer cachexia: rationale for the MENAC (Multimodal-Exercise, Nutrition and Anti-inflammatory medication for Cachexia) trial. BMJ supportive & palliative care 2018; 10.1136/bmjspcare-2017-001440.

Pask S, Pinto C, Bristowe K, van Vliet L, Nicholson C, Evans CJ, George R, Bailey K, Davies JM, Guo P, Daveson BA, Higginson IJ, Murtagh FE. A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals. Palliative medicine 2018; 10.1177/0269216318757622: 269216318757622.

Marshall S, Grinyer A, Limmer M. The Experience of Adolescents and Young Adults Treated for Cancer in an Adult Setting: A Review of the Literature. Journal of adolescent and young adult oncology 2018; 10.1089/jayao.2017.0123.

Harding R, Marchetti S, Onwuteaka-Philipsen BD, Wilson DM, Ruiz-Ramos M, Cardenas-Turanzas M, Rhee Y, Morin L, Hunt K, Teno J, Hakanson C, Houttekier D, Deliens L, Cohen J. Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data. BMC infectious diseases 2018; 18(1): 55.

Orlowska D, Selman LE, Beynon T, Radcliffe E, Whittaker S, Child F, Harding R. "It's a traumatic illness, traumatic to witness." A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma. The British journal of dermatology 2018; 10.1111/bjd.16447.

Miyashita M, Aoyama M, Yoshida S, Yamada Y, Abe M, Yanagihara K, Shirado A, Shutoh M, Okamoto Y, Hamano J, Miyamoto A, Nakahata M, Sato K, Morita T. The distress and benefit to bereaved family members of participating in a post-bereavement survey. Jpn J Clin Oncol. 2018 Feb 1;48(2):135-43.

Nakazawa Y, Yamamoto R, Kato M, Miyashita M, Kizawa Y, Morita T. Improved knowledge of and difficulties in palliative care among physicians during 2008 and 2015 in Japan: Association with a nationwide palliative care education program. Cancer. 2018 Feb 1;124(3):626-35.

Arahata T, Miyashita M, Takenouchi S, Tamura K, Kizawa Y. Development of an Instrument for Evaluating Nurses' Knowledge and Attitude Toward End-of-Life Care: End-of-Life Nursing Education Consortium - Japan Core Quiz. J Hosp Pallat Nurs. 2018 Feb; 20(1): 55-62.

Sakashita A, Morita T, Kishino M, Aoyama M, Kizawa Y, Tsuneto S, Shima Y, Miyashita M. Which Research Questions Are Important for the Bereaved Families of Palliative Care Cancer Patients? A Nationwide Survey. J Pain Symptom Manage. 2018 Feb; 55(2): 379-86.

Nakazawa Y, Kato M, Miyashita M, Morita T, Kizawa Y. Changes in nurses' knowledge, difficulties, and self-reported practices toward palliative care for cancer patients in Japan: an analysis of two nationwide representative surveys in 2008 and 2015. J Pain Symptom Manage. 2018 Feb;55(2):402-12.

Hirooka K, Otani H, Morita T, Miura T, Fukahori H, Aoyama M, Kizawa Y, Shima Y, Tsuneto S, Miyashita M. End-of-life experiences of family caregivers of deceased patients with cancer: A nation-wide survey. Psychooncology. 2018 Jan;27(1):272-8.

Hamano J, Morita T, Mori M, Igarashi N, Shima Y, Miyashita M. Prevalence and predictors of conflict in the families of patients with advanced cancer: A nationwide survey of bereaved family members. Psychooncology. 2018 Jan;27(1):302-8.  

January

Featured publication:

Lowther K, Harding R, Simms V, Ahmed A, Ali Z, Gikaara N, Sherr L, Kariuki H, Higginson IJ, Selman LE. Active ingredients of a person-centred intervention for people on HIV treatment: analysis of mixed methods trial data. BMC infectious diseases 2018; 18(1): 27.

This paper provides an analysis of mixed-methods data from our RCT of integrated palliative care for people on HIV treatment in Kenya https://www.ncbi.nlm.nih.gov/pubmed/26423375. The analysis of components of care received and patient views on benefits and mechanisms of action is essential to enable replication of the intervention.

Quantitative data analysis identified that intervention patients received more weak opioid, laxatives, discussion about spiritual worries, emotional support from staff for themselves and their families, time to talk about worries, discussion about future and planning ahead. Qualitative data analysis found that patients reported that having time to talk, appropriate pain medication and effective health education was of therapeutic value for their psychological well-being. Routine care must provide opportunities and means for existing clinical staff to make routine appointments more person-centred. This approach enabled staff to identify and manage multidimensional problems and provide tailored health education and counselling.

 

Other papers in peer reviewed journals:

Connolly B, Maddocks M, MacBean V, Bernal W, Hart N, Hopkins P, Rafferty GF. Non-volitional assessment of tibialis anterior force and architecture during critical illness. Muscle & nerve 2017; 10.1002/mus.26049.

Ekstrom M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ. One evidence base; three stories: do opioids relieve chronic breathlessness? Thorax 2018; 73(1): 88-90.

 Forjaz de Lacerda A, Gomes B. Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987-2011: a population-based study. BMC pediatrics 2017; 17(1): 215. 

Turner-Stokes L, Ashford S, Esquenazi A, Wissel J, Ward AB, Francisco G, Lains J, Suputtitada A, Serrano S, Baguley IJ, Barnes M, Simpson DM. A comprehensive person-centred approach to adult spastic paresis: a consensus-based framework. European journal of physical and rehabilitation medicine 2017; 10.23736/s1973-9087.17.04808-0.

Sanjo M, Morita T, Miyashita M, Sato K, Kamibeppu K, Tsuneto S, Shima Y. Are Bereaved Family Members Satisfied With Information Provision About Palliative Care Units in Japan?  Am J Hosp Palliat Med. 2018; 35(2): 275-283

Mori M, Kuwama Y, Ashikaga T, Parsons HA, Miyashita M. Acculturation and Perceptions of a Good Death Among Japanese Americans and Japanese Living in the U.S. J Pain Symptom Manage. 2018; 55(1):31-38.

 

2017

 

December

Featured Publication: 

Higginson IJ, Daveson BA, Morrison RS, Yi D, Meier D, Smith M, Ryan K, McQuillan R, Johnston BM, Normand C. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries. BMC geriatrics 2017; 17(1): 271.

Achieving choice, such as preferred place of death, is proposed as a quality marker. We compare factors associated with preferences using data from 138 old adult patients in 3 countries. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'.

Other papers in peer reviewed journals:

Coelho A, de Brito M, Barbosa A. Caregiver anticipatory grief: phenomenology, assessment and clinical interventions. Current opinion in supportive and palliative care 2017; 10.1097/spc.0000000000000321.

Guo P, Harding R, Higginson IJ. Palliative care needs of heart failure patients in China: putting people first. Current opinion in supportive and palliative care 2017; 10.1097/spc.0000000000000315.

Kobayakawa M, Ogawa A, Konno M, Kurata A, Hamano J, Morita T, Kizawa Y, Tsuneto S, Shima Y, Aoyama M, Miyashita M. Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-care setting: A nation-wide survey from the perspective of bereaved family members in Japan. Journal of psychosomatic research 2017; 103: 127-32.

Mori M, Yoshida S, Shiozaki M, Baba M, Morita T, Aoyama M, Kizawa Y, Tsuneto S, Shima Y, Miyashita M. Talking About Death With Terminally-Ill Cancer Patients: What Contributes to the Regret of Bereaved Family Members? Journal of pain and symptom management 2017; 54(6): 853-60.e1.

Neo J, Fettes L, Gao W, Higginson IJ, Maddocks M. Disability in activities of daily living among adults with cancer: A systematic review and meta-analysis. Cancer treatment reviews 2017; 61: 94-106.

Nolan CM, Maddocks M, Canavan JL, Jones SE, Delogu V, Kaliaraju D, Banya W, Kon SS, Polkey MI, Man WD. Reply to: Increasing Physical Activity in Daily Life in COPD: Each Piece Counts to Solve the Puzzle. American journal of respiratory and critical care medicine 2017; 10.1164/rccm.201711-2213LE.

Oluyase AO, Raistrick D, Hughes E, Lloyd C. Prescribers' views and experiences of assessing the appropriateness of prescribed medications in a specialist addiction service. International journal of clinical pharmacy 2017; 39(6): 1248-55

Takenouchi S, Sasahara T, Miyashita M, Kawa M, Umeda M, Kuwata M, Arahata T, Kizawa Y, Tamura K. Empowering Nurses Through Translating the End-of-Life Nursing Education Consortium: The End-of-Life Nursing Education Consortium–Japan Core Curriculum Project. Journal of Hospice & Palliative Nursing 2017; 19(6): 539-49.

Yamashita R, Arao H, Takao A, Masutani E, Morita T, Shima Y, Kizawa Y, Tsuneto S, Aoyama M, Miyashita M. Unfinished Business in Families of Terminally Ill With Cancer Patients. Journal of pain and symptom management 2017; 54(6): 861-9. 

November

Featured Publication: 

Namisango E, Allsop MJ, Powell RA, Friedrichsdorf SJ, Luyirika EB, Kiyange F, Mukooza E, Ntege C, Garanganga E, Ginindza-Mdluli MN, Mwangi-Powell F, Mondlane LJ, Harding R. Investigation of the practices, legislation, supply chain and regulation of opioids for clinical pain management in Southern Africa: A multi-sectoral, cross-national, mixed methods study. Journal of pain and symptom management 2017; 10.1016/j.jpainsymman.2017.11.010.

 

The authors used a robust novel mixed methods approach to investigate opioid supply chain mechanisms in Southern Africa. Findings shed light on current opioid supply chain mechanisms practices and highlight major gaps in the chain. Context relevant and evidence-based solutions are provided to address the; overly restrictive controlled medicines’ laws; use of stigmatizing language in key documents; inaccurate estimation practices; and knowledge gaps in the distribution, storage and prescription; critical shortage of prescribers. 

Other papers in peer reviewed journals:

Nolan CM, Maddocks M, Maher TM, Canavan JL, Jones SE, Barker RE, Patel S, Jacob J, Cullinan P, Man WD. Phenotypic characteristics associated with slow gait speed in idiopathic pulmonary fibrosis. Respirology (Carlton, Vic) 2017; 10.1111/resp.13213.

 Kane PM, Ellis-Smith CI, Daveson BA, Ryan K, Mahon NG, McAdam B, McQuillan R, Tracey C, Howley C, O'Gara G, Raleigh C, Higginson IJ, Murtagh FE, Koffman J. Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study. Palliative medicine 2017; 10.1177/0269216317738161: 269216317738161.

Johnson MJ, Jamali A, Ross J, Fairhurst C, Boland J, Reigada C, Hart SP, Grande G, Currow DC, Wells AU, Bajwah S, Papadopoulos T, Bland JM, Yorke J. Psychometric validation of the needs assessment tool: progressive disease in interstitial lung disease. Thorax 2017; 10.1136/thoraxjnl-2017-210911. 

Cooper V, Clatworthy J, Harding R, Whetham J. Measuring quality of life among people living with HIV: a systematic review of reviews. Health and quality of life outcomes 2017; 15(1): 220.

Brighton LJ, Selman LE, Gough N, Nadicksbernd JJ, Bristowe K, Millington-Sanders C, Koffman J. 'Difficult Conversations': evaluation of multiprofessional training. BMJ supportive & palliative care 2017; 10.1136/bmjspcare-2017-001447.

October

Featured Publication: 

Bone AE, Gomes B, Etkind SN, Verne J, Murtagh FEM, Evans CJ, and Higginson IJ. What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. 2017 Palliative Medicine doi: 10.1177/0269216317734435.

 The number of deaths are projected to rise in the next 25 years. Understanding where these deaths may occur is important for health and social care planning. We found that deaths in care homes could more than double by 2040, if recent trends continue. This underlines the urgent need to ensure adequate bed capacity, resources and training of staff in palliative care in all care homes to support residents towards the end of life.

 Other papers in peer reviewed journals:

Bajwah, S., Prof Michael Kreuter 13 October 2017. ‘Palliative care in interstitial lung disease: living well.’ The Lancet Respiratory Medicine. DOI: http://dx.doi.org/10.1016/S2213-2600(17)30383-1.

Maddocks, M. & Higginson I.J. 13 October 2017. ‘Universal coverage for palliative care in respiratory disease and critical care.’ The Lancet Respiratory Medicine. DOI: 10.1016/S2213-2600(17)30384-3.

Reilly, CC, Bausewein, C, Garrod, R, Jolley, C, Moxham, J & Higginson, IJ 2017, 'Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness.' Palliative Medicine, vol 31, no. 9, pp. 868–875. DOI: 10.1177/0269216316680314.

Selman, LE; Brighton, LJ; Sinclair, S; Karvinen, I; Egan, R; Speck, P; Powell, RA; Deskur-Smielecka, E; Glajchen, M; Adler, S; Puchalski, C; Hunter, J; Gikaara, N, & Hope, J. 2017. ‘Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.’ Palliative Medicine. DOI.10.1177/0269216317734954 

St John, K & Koffman, J 2017, 'Introducing Namaste Care to the hospital environment: a pilot study' Annals of Palliative Medicine, vol 6, no. 4, pp. 354-364.DOI:10.21037/apm.2017.06.27. 

 

September

Featured Publication: 

Maddocks, M., Lovell, N., Booth, S., Man, W. D.-C., & Higginson, I. J. (2017). Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. The Lancet, 390(10098), 988-1002. doi:10.1016/S0140-6736(17)32127-X

People with advanced respiratory disease have distressing physical and psychological symptoms, often limited understanding of their disease, and infrequently discuss end-of-life issues. This review advocates for early integration of palliative care with respiratory, primary care, and rehabilitation services, with referral based on the complexity of symptoms and concerns rather than prognosis.

 

Other papers in peer reviewed journals:

Bajwah, S., Yi, D., Grande, G., Todd, C., Marjolein, G., Costantini, M., . . . Higginson, I. J. (2017). The effectiveness and cost-effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews(Issue 9). doi:10.1002/14651858.CD012780

 

Fraser, B. A., Powell, R. A., Mwangi-Powell, F. N., Namisango, E., Hannon, B., Zimmermann, C., & Rodin, G. (2017). Palliative Care Development in Africa: Lessons From Uganda and Kenya. Journal of Global Oncology.

Nolan, C. M., Delogu, V., Maddocks, M., Patel, S., Barker, R. E., Jones, S. E., . . . Man, W. D.-C. (2017). Validity, responsiveness and minimum clinically important difference of the incremental shuttle walk in idiopathic pulmonary fibrosis: a prospective study. Thorax. doi:10.1136/thoraxjnl-2017-210589

Nolan, C. M., Maddocks, M., Canavan, J. L., Jones, S. E., Delogu, V., Kaliaraju, D., . . . Man, W. D.-C. (2017). Reply to: Are All Steps Created Equal? Revisiting Pedometer Use During Pulmonary Rehabilitation for Individuals Living with COPD. AJRCCM. doi:10.1164/rccm.201707-1513LE

Rhee, J. Y., Garralda, E., Torrado, C., Blanco, S., Ayala, I., Namisango, E., . . . Centeno, C. (2017). Palliative care in Africa: a scoping review from 2005–16. Lancet Oncology.

Rhee, J. Y., Garralda, E., Torrado, C., Blanco, S., Ayala, I., Namisango, E., . . . Centeno, C. (2017). Publications on Palliative Care Development Can Be Used as an Indicator of Palliative Care Development in Africa. J Palliat Med, Epub ahead of print. doi:10.1089/jpm.2017.0168.

 

August

Featured publications: 

Brighton, L.J., Koffman, J., Hawkins, A., McDonald, C., O’Brien, S., Robinson, V., Khan, S.A., George, R., Higginson, I.J., Selman, L.E. A systematic review of end of life care communication skills training for generalist palliative care providers: research quality and reporting guidance. J Pain Symptom Manage: a Systematic Review and Meta-Analysis. 2017;04(8): http://dx.doi.org/10.1016/j.jpainsymman.2017.04.008

Selman, L.E., Brighton, L.J., Hawkins, A., McDonald, C., O'Brien, S., Robinson, V., Khan, S.A., George, R., Ramsenthaler, C., Higginson, I.J. and Koffman, J. S. The effect of communication skills training for generalist palliative care providers on patient-reported outcomes and clinician behaviours: a systematic review and meta-analysis. J Pain Symptom Manage. 2017;01(8): http://dx.doi.org/10.1016/j.jpainsymman.2017.04.007

 These papers present the findings of a systematic review of end of life care communication skills training interventions for generalist providers of palliative care. The first describes the state of the science in terms of training provided, evaluation methods used, and reporting quality, of over 150 interventions identified. The second assesses the impact of such training on staff behaviours and patient-reported outcomes through meta-analysis of results from randomised controlled trials. Few reported involving patients and families developing their intervention, most evaluations did not have a control group, and reporting quality was inconsistent. We suggest new guidance to improve the latter. Meta-analyses showed effects of training on staff behaviours, but results regarding patient-reported outcomes were inconclusive. 

Other papers in peer reviewed journals:

Hepgul N; Gao W; Evans CJ; Jackson D; van Vliet LM; Byrne A; Crosby V; Groves KE; Lindsay F; Higginson IJ; OPTCARE Neuro. Integrating palliative care into neurology services: what do the professionals say? BMJ Support Palliat Care. 2017;03(8): Epub ahead of print, 10.1136/bmjspcare-2017-001354 

Gomes B; de Brito M; Sarmento P V; Yi D; Soares D; Fernandes J; Fonseca B; Gonçalves E; Ferreira PL; Higginson IJ. Valuing attributes of home palliative care with service users: a pilot discrete choice experiment. J Pain Symptom Manage. 2017;07(8): In Press Accepted Manuscript, http://dx.doi.org/10.1016/j.jpainsymman.2017.05.005

Harriet Mather, Ping Guo, Alice Firth, Joanna M Davies, Nigel Sykes, Alison Landon, Fliss EM Murtagh. Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients. Palliat Med. 2017;16(8): https://doi.org/10.1177/0269216317727157.

 

July

Featured publication: 

Ang K, Hepgul N, Gao W, Higginson IJ. Stategies used in improving and assessing the level of reporting of implemenation fidelit in randomised controlled trials of palliative care complex interventions: A systematic review. Palliat Med. 2017: 269216317717369

This systematic review summarises the strategies used to improve implementation fidelity in recently published randomised controlled trials of palliative care complex interventions. We identified over 88 strategies to improve implementation fidelity. These strategies could be used, not just in research but in clinical practice, to guide all phases of the development and evaluation of palliative care interventions. 

Other papers in peer reviewed journals:

Wakeham K, Harding R, Levin J, Parkes-Ratanshi R, Kamali A, Lalloo DG. The impact of antiretroviral therapy on symptom burden among HIV outpatients with low CD4 count in rural Uganda: nested longitudinal cohort study. BMC Palliat Care. 2017;13(7): 17(1):8 .

Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, et al. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med. 2017;31(7): 651-60.

 

 

June

Featured publication:

Henson LA, Higginson IJ, Gao W; BuildCARE. What factors influence emergency department visits by patients with cancer at the end of life? Analysis of a 124,030 patient cohort. Palliat Med. 2017 Jun 1:269216317713428. doi: 10.1177/0269216317713428. [Epub ahead of print]

In this large-scale national study, we analysed the A&E visit pattern by over 120000 cancer decedents. We found patients with greater comorbidity, lung or head and neck cancer and a higher number of previous emergency department visits are more likely to visit the emergency department multiple times in the last month of life. Previously reported socio-demographic factors (men, younger age, Black, low socio-economic status) are also confirmed for the first time in a UK population.

Other papers in peer reviewed journals: 

Hunt J, Bristowe K, Chidyamatare S, Harding R. 'They will be afraid to touch you': LGBTI people and sex workers' experiences of accessing healthcare in Zimbabwe-an in-depth qualitative study. BMJ Glob Health. 2017;2(2):e000168.

Ni Laoire A, Fettes L, Murtagh FE. A systematic review of the effectiveness of palliative interventions to treat rectal tenesmus in cancer. Palliat Med. 2017:269216317697897.

 Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, et al. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med. 2017;31(7):651-60.

 Webster L, Groskreutz D, Grinbergs-Saull A, Howard R, O'Brien JT, Mountain G, et al. Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations. Health technology assessment (Winchester, England). 2017;21(26):1-192.

Letters:

Costantini M, Higginson IJ, Merlo DF, Di Leo S, Tanzi S. About the "surprise question". Cmaj. 2017;189(23):E807.

May

Featured Publication:

Dzingina MD, McCrone P, Higginson IJ. Does the EQ-5D capture the concerns measured by the Palliative care Outcome Scale? Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods. Palliat Med. 2017:269216317705608.

We assessed the conceptual overlap between the POS and the EQ-5D; and the feasibility of mapping between them to obtain utilities for calculating QALYs. We found that the EQ-5D misses some important concerns measured by the POS, therefore, mapping the POS onto the EQ-5D to obtain utilities would be inappropriate.

Other papers in peer reviewed journals: 

Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):102.

Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Higginson IJ, et al. Seeing is believing - healthcare professionals' perceptions of a complex intervention to improve care towards the end of life: A qualitative interview study. Palliat Med. 2017:269216317711336.

Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, et al. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med. 2017:269216317705102.

Groenvold M, Petersen MA, Damkier A, Neergaard MA, Nielsen JB, Pedersen L, et al. Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial. Palliat Med. 2017:269216317705100.

Kane PM, Murtagh FE, Ryan KR, Brice M, Mahon NG, McAdam B, et al. Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study. Palliat Med. 2017:269216317706426.

Maddocks M, Delogu V, Jones SE, Polkey MI, Man WD. Exercise Training Versus Neuromuscular Stimulation in Severe chronic obstructive pulmonary disease. Archivos de bronconeumologia. 2017.

 Nolan CM, Kon SSC, Patel S, Jones SE, Barker RE, Polkey MI, et al. Gait speed and pedestrian crossings in COPD. Thorax. 2017.

Maddocks M, Granger C. Lower limb muscle function and exercise performance in lung cancer. Respirology. 2017. 

April

Featured Publication:

Ang K, Maddocks M, Xu H,  Higginson I, The Effectiveness of Singing or Playing a Wind Instrument in Improving Respiratory Function in Patients with Long-Term Neurological Conditions: A Systematic Review. J Music Ther (2017) 54 (1): 108-131. https://doi.org/10.1093/jmt/thx001

Many long-term neurological conditions adversely affect respiratory function. Our systematic review of published randomized controlled trials and observational studies in people with long-term neurological conditions found a positive trend in respiratory function following singing or wind instrument therapy. The utility of these relatively inexpensive interventions warrants further investigation.

Other papers in peer reviewed journals: 

May P, Morrison RS, Murtagh FE. Current state of the economics of palliative and end-of-life care: A clinical view. Palliat Med. 2017;31(4):293-5.

 Ekstrom M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ. One evidence base; three stories: do opioids relieve chronic breathlessness? Thorax. 2017.

March

Featured Publication:

 Davies JM, Osborne TR, Edmonds PM, Schey SA, Devereux S, Higginson IJ, Ramsenthaler C. The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma. Eur J Haematol. 2017 Feb 3. doi: 10.1111/ejh.12864. [Epub ahead of print]

 Other papers in peer reviewed journals: 

Reigada C, Papadopoulos A, Boland J, Yorke J, Ross J, Currow DC, Bajwah S, Grande G, Wells A, Johnson MJ. Implementation of the Needs Assessment Tool for patients with interstitial lung disease (NAT:ILD): facilitators and barriers. Thorax Published Online First: 20 February 2017. doi: 10.1136/thoraxjnl-2016-209768.

Ekstrom M, Bajwah S, Johnson M. Incident opioid drug use and adverse respiratory outcomes among older adults with COPD. European Respiratory Journal 2017 49: 1602311; DOI: 10.1183/13993003.02311-2016

Ní Laoire A, Fettes L, Murtagh FEM. A systematic review of the effectiveness of palliative interventions to treat rectal tenesmus in cancer. Palliative Medicine 1-7. March 2017. DOI: https://doi.org/10.1177/0269216317697897

May P, Morrison RS, Murtagh FE. Current state of the economics of palliative and end-of-life care: A clinical view. Palliat Med. 2017 Apr;31(4):293-295. doi: 10.1177/0269216317695680.

 Sleeman KE, Koffman J, Higginson IJ. Leaky pipeline, gender bias, self-selection or all three? A quantitative analysis of gender balance at an international palliative care research conference. BMJ Support Palliat Care. 2017 Mar 7. pii: bmjspcare-2016-001211. doi: 10.1136/bmjspcare-2016-001211. [Epub ahead of print]

Selman LE, Brighton LJ, Robinson V, George R, Khan SA, Burman R, Koffman J. Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK. BMC Palliat Care. 2017 Mar 9;16(1):17. doi: 10.1186/s12904-017-0191-2.

Dzingina M,  Higginson IJ,  McCrone P,. Murtagh FEM. Development of a Patient-Reported Palliative Care-Specific Health Classification System: The POS-E, The Patient - Patient-Centered Outcomes Research, 2017. DOI: 10.1007/s40271-017-0224-1

 Editorial:

(8) Maddocks M, Delogu V, Jones SE, Polkey MI, Man WD-C. Entrenamiento físico frente a estimulación neuromuscular en la EPOC grave. Arch Bronconeumol. 2017. http://dx.doi.org/10.1016/j.arbres.2016.11.022

February

Featured Publication:

Higginson IJ,  Reilly C.C,  Bajwah S,  Maddocks M, Costantini M,  Gao W. (GUIDE_Care). Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors. BMC Medicine2017.15:19. DOI: 10.1186/s12916-016-0776-2.

Other papers in peer reviewed journals: 

Pearson C, Verne J, Wells C, Polato GM, Higginson IJ, Gao W. Measuring geographical accessibility to palliative and end of life (PEoLC) related facilities: a comparative study in an area with well-developed specialist palliative care (SPC) provision. BMC Palliat Care. 2017 Jan 26; 16(1):14. DOI: 10.1186/s12904-017-0185-0.

Dzingina MD, Reilly CC, Bausewein C, Jolley CJ, Moxham J, McCrone P, Higginson IJ, Yi D. Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis. Palliat Med. 2017 Feb 1:269216317690994. DOI: 10.1177/0269216317690994. [Epub ahead of print]

Review article

Groeneveld IE, Cassel BJ, Bausewein C, Csikós A, Krajnik M, Ryan K, Haugen DF, Eychmueller S, Keller HG, Allan S, Hasselaar J, Merino TGB, Swetenham K, Piper K, Fürst CJ, Murtagh FEM. Funding models in palliative care: Lessons from international experience. Pall Med. doi:10.1177/0269216316689015

Berry M, Brink E, Harris J, Sleeman KE. Supporting relatives and carers at the end of a patient's life. BMJ. 2017 Feb 2;356:j367. doi: 10.1136/bmj.j367.

In press

Ashford, S. Spasticity: past, present and future. Physiotherapy Research International. 2017

January

Featured Publication:

Brighton, LJ., Koffman, J., Robinson, V., Khan, SA., George, R., Burman, R., & Selman, LE. (2017). “End of life could be on any ward really”: A qualitative study of hospital volunteers’ end of life care training needs and learning preferences. Palliative Medicine. doi:10.1177/0269216316679929

 Our qualitative interview study aimed to explore hospital volunteers’ end of life care training needs and preferences. We found that hospital volunteers do encounter patients with life-threatening illness and their families, and feel they could benefit from additional training in communication skills, grief and bereavement, spiritual diversity, common symptoms, and volunteer self-care. Interactive teaching methods were preferred, including case-examples and roleplay. Hospital volunteers felt that an opportunity to ‘refresh’ training at a later date would enhance learning. 

Other papers in peer reviewed journals:

Cox S, Murtagh FEM, Tookman A,Gage A, SykesN, McGinn M, Kathoria M,  Wilderspin H, Chart L. A review of specialist palliative care provision and access across London – mapping the capital, London Journal of Primary Care. 2016. DOI: 10.1080/17571472.2016.1256045.

Gough N, Koffman J, Ross JR, Riley J, Judson I. Symptom burden in advanced Soft Tissue Sarcoma. J Pain Symptom Manage. 2016 Dec 29. pii: S0885-3924(16)31194-0. DOI:10.1016/j.jpainsymman.2016.10.357. [Epub ahead of print]

Erez G, Selman L, Murtagh FEM. Measuring health-related quality of life in patients with conservatively managed stage 5 chronic kidney disease: limitations of the Medical Outcomes Study Short Form 36: SF-36. Qual Life Res. 2016; 25: 2799. doi:10.1007/s11136-016-1313-7

Brighton LJ, Koffman J, Robinson V, Khan SA, George R, Burman R, Selman LE. ‘End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences. Palliat Med. 2017 Jan 1:269216316679929. doi: 10.1177/0269216316679929. [Epub ahead of print]

Harding R, Wolfe J, Baker JN. Outcome Measurement for Children and Young People. J Palliat Med. 2017 Jan 10. doi: 10.1089/jpm.2016.0525. [Epub ahead of print]

Bayly J, Wilcock A, Higginson IJ, Maddocks M. Early Engagement in Physical Activity and Exercise Is Key in Managing Cancer Cachexia. Oncology (Williston Park). 2017 Jan 15;31(1). pii: 220697. PMID: 28090620

2016 - list of all publications in 2016 (pdf)

December

Featured Publications:

Turner-Stokes, L. A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness. J Med Ethics doi:10.1136/medethics-2016-104057

Following recent press controversy, this article addresses the role of courts and clinicians in decisions to withdraw life-sustaining treatment from patients with disorders of consciousness. It presents a 10-year mortality review demonstrating that clinicians regularly make best interests decisions in conjunction with families (that may include withdrawal of clinically-assisted nutrition and hydration), and that these can be made within the current legal framework without necessarily involving the court in all cases. This is the first published case series of its kind.

Nolan CM, Maddocks M, Canavan JL, Jones SE, Delogu V, Kaliaraju D, Banya W, Kon SS, Polkey MI, Man WD. Pedometer Step Count Targets During Pulmonary Rehabilitation in COPD: A Randomized Controlled Trial. Am J Respir Crit Care Med. 2016 Dec 2. [Epub ahead of print]. DOI:10.1164/rccm.201607-1372OC.

 Other papers in peer reviewed journals: 

Bone AE, Hepgul N, Kon S, Maddocks M. Sarcopenia and frailty in chronic respiratory disease: Lessons from gerontology. Chron Respir Dis. 2016 Dec 6. pii: 1479972316679664. [Epub ahead of print] DOI: 10.1177/1479972316679664.

Reilly CC, Bausewein C, Garrod R, Jolley CJ, Moxham J, Higginson IJ. Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness. Palliat Med. 2016 Dec 8. pii: 0269216316680314. [Epub ahead of print]. DOI: 10.1177/0269216316680314

Harding R, Hopkins P, Metaxa V, Higginson IJ. Do we have adequate tools and skills to manage uncertainty among patients and families in ICU? Intensive Care Med. 2016 Dec 8. [Epub ahead of print]. DOI: 10.1007/s00134-016-4630-y

Malcolm L, Mein G, Jones A, Talbot-Rice H, Maddocks M, Bristowe K. Strength in numbers: patient experiences of group exercise within hospice palliative care. BMC Palliative Care. 2016;15 (1):97. DOI: 10.1186/s12904-016-0173-9.

Man WD, Barker R, Maddocks M, Kon SS. Outcomes from hospitalised acute exacerbations of COPD: a bundle of optimism? Thorax. 2017 Jan;72(1):8-9. DOI: 10.1136/thoraxjnl-2016-209212. Epub 2016 Oct 18. DOI: 10.1136/thoraxjnl-2016-209212.

November

Featured publication: 

Selman LE ,  Daveson  BA,  Smith M, Johnston B, Ryan K, Morrison RS, Pannell C, McQuillan , de Wolf-Linder S, Pantilat SZ, Klass L, Meier D, Normand C, Higginson IJ. How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA. Age Ageing. 2016 Nov 3  DOI: 10.1093/ageing/afw193

We conducted an ethnography in 6 hospitals in England, Ireland and the USA, involved fieldwork and interviews with patients aged ≥65, carers, specialist palliative care (SPC) and other clinicians. Data were analysed using directed thematic analysis. We found empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff–patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC.

We would like to acknowledge the contribution of our late colleague, Caty Pannell.

Other papers in peer reviewed journals: 

Currow DC, Davidson PM, Higginson IJ. "Outcomes" Is Not an Oxymoron in Hospice/Palliative Care.  J Palliat Med. 2016 Nov;19(11):1128-1129. DOI: 10.1089/jpm.2016.0427

Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M, et al. “I’ll be in a safe place”: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Supportive & Palliative Care. 2016;6(3):394-. doi:10.1136/bmjopen-2016-012134

Dalton E, Lannin NA, Laver K, Ross L, Ashford S, McCluskey A, Cusick A. Validity, reliability and ease of use of the disabilities of arm, shoulder and hand questionnaire in adults following stroke. Disabil Rehabil. 2016 Oct 21:1-8. [Epub ahead of print]

Harding R, Namisango E, Radbruch L, Katabira ET. How to Establish Successful Research Partnerships in Global Health Palliative Care. J Pain Symptom Manage. 2016 Nov 11. pii: S0885-3924(16)30769-2. doi: 10.1016/j.jpainsymman.2016.10.355. [Epub ahead of print]

Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE. Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med. 2016; DOI:10.1177/0269216316649155

Jones S, Man WD, Gao W, Higginson IJ, Wilcock A, Maddocks M. Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease. Cochrane Database Syst Rev. 2016;10: CD009419. Review

October

Featured Publication: 

Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, Daveson BA. Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliat Med, first published on October 25, 2016 doi:10.1177/0269216316675096.

This multi-method qualitative study aimed to develop a measure to assess symptoms and problems in people with dementia in care homes: the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem). Our study identified important dementia and care home specific items to ensure comprehensive assessment in this population and setting. IPOS-Dem was refined to ensure acceptability and comprehension for care home staff, with consideration for care staff remit and expertise. 

Other papers in peer reviewed journals: 

Morton RL, Webster AC, McGeechan K, Howard K, Murtagh FE, Gray NA, Kerr PG, Germain MJ, Snelling P. Conservative Management and End of Life Care in an Australian Cohort with ESRD. Clin J Am Soc Nephrol. 2016 Oct 3. DOI: 10.2215/CJN.11861115

Harding R, Defilippi K, Cameron D. What palliative care-related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital? A cross-sectional self-report study. Palliat Med. 2016 Oct;30(9):862-8. doi: 10.1177/0269216316637240.

Gao W, Crosby V, Wilcock A, Burman R, Silber E, et al. (2016) Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions. PLoS ONE 11(10): e0165379. doi: 10.1371/journal.pone.0165379

September

Featured publication:

Gao W, Verne J, Peacock J, Stiller C, Wells C, Greenough A, Higginson IJ. Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993-2014. BMC Cancer. 2016;16(1):727. doi: 10.1186/s12885-016-2695-1

This study found that the national end of life care initiatives made little difference in getting children  and young people (CYP) to die at home. Hospitals remain the most common place of death. Our findings highlight a need for CYP specific initiatives to enhance end of life care support and capacities. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-016-2695-1

Other papers in peer reviewed journals: 

Bone AE, Morgan M, Maddocks M, Sleeman KE, Wright J, Taherzadeh S, Ellis-Smith C, Higginson IJ, Evans CJ. Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders. Age Ageing. 2016. DOI:10.1093/ageing/afw124

Bone AE, Gao W, Gomes B, Sleeman KE, Maddocks M, Wright J, Yi D, Higginson IJ, Evans CJ. Factors Associated with Transition from Community Settings to Hospital as Place of Death for Adults Aged 75 and Older: A Population-Based Mortality Follow-Back Survey. J Am Geriatr Soc. 2016. doi: 10.1111/jgs.14442

Maddocks M, Hopkinson J, Conibear J, Reeves A, Shaw C, Fearon KC. Practical multimodal care for cancer cachexia. Curr Opin Support Palliat Care. 2016. DOI: 10.1097/SPC.0000000000000241

Turner-Stokes L, Bavikatte G, Williams H, Bill A, Sephton K. Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis. BMJ Open. 2016 Sep 8;6(9):e012112. doi: 10.1136/bmjopen-2016-012112.

August

Featured publication:

Lovell N, Jones C, Baynes D, Dinning S, Vinen K, Murtagh FE. Understanding patterns and factors associated with place of death in patients with end-stage kidney disease: A retrospective cohort study. Palliat Med. 2016. doi:10.1177/0269216316655747.

 This retrospective cohort study aimed to understand patterns of place of death in patients with end-stage kidney disease. A total of 321 patients died between 2006 and 2012. Management pathway and living circumstances were most strongly associated with place of death. There were also changes in place of death over time, with more patients dying out of hospital in 2012 compared to 2006.

Other papers in peer reviewed journals: 

Brown EA, Bekker HL, Davison SN, Koffman J, Schell JO. Supportive Care: Communication Strategies to Improve Cultural Competence in Shared Decision Making. Clin J Am Soc Nephrol. 2016. doi:10.2215/cjn.13661215.

Murtagh FE, Burns A, Moranne O, Morton RL, Naicker S. Supportive Care: Comprehensive Conservative Care in End-Stage Kidney Disease. Clin J Am Soc Nephrol. 2016. doi:10.2215/cjn.04840516.

Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016;30(8):730-44. doi:10.1177/0269216316634601.

Larkin PJ, Murtagh F, Richardson H, Langner MB, Payne S. Collaboration: Securing a future for palliative care research. Palliat Med. 2016;30(8):709-10. doi:10.1177/0269216316661970.

Erez G, Selman L, Murtagh FE. Measuring health-related quality of life in patients with conservatively managed stage 5 chronic kidney disease: limitations of the Medical Outcomes Study Short Form 36: SF-36. Qual Life Res. 2016. doi:10.1007/s11136-016-1313-7.

Daykin, A., Selman, L. E., Cramer, H., McCann, S., Shorter, G., Sydes, M., Gamble, C., Macefield, R., Lane, J. A. & Shaw, A. What are the roles and valued attributes of a Trial Steering Committee?: A ethnographic study of 8 clinical trials facing challenges. Trials. 2 Jun 2016, 17:307

Goodhead, A., Speck, P. & Selman, L. 'I think you just learnt as you went along' - Community clergy's experiences of and attitudes towards caring for dying people: A pilot study.. Palliative medicine. Jul 2016 30, 7, p. 674-683

 

July

Featured publication:

Ramsenthaler C, Osborne TR, Gao W, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study. BMC Cancer 2016; 16: 427.

Multiple myeloma, the second most common blood cancer, is incurable, yet patients seldom receive support from palliative care services. In this multi-centre study we assessed the symptom prevalence and burden in patients with multiple myeloma.

For this we used the newly developed Myeloma Patient Outcome Scale (MyPOS). A high mean of 7.2 symptoms was reported, both in patients with relapsed/progressive disease but also in newly diagnosed patients undergoing first-line treatment. Patients with a high symptom burden, presence of fatigue or pain and low physical function would profit from palliative care services.

June

Featured publication: 

Maddocks M, Kon SSC, Canavan JC, Jones SE, Nolean CM, Labey A, Polkey MI, Man WD. Physical frailty and pulmonary rehabilitation in COPD: a prospecitve cohort study. Thorax. doi:10.1136/thoraxjnl-2016-208460. Epub 2016 Jun 13.

In this study we asked; what is the prevalence of frailty in stable COPD, and does frailty affect the completion and outcomes of pulmonary rehabilitation?

 

We found that frailty affects one in every four patients with COPD entering pulmonary rehabilitation, is associated with favourable outcomes, but is also strong risk factor for non-completion.

This is the first characterisation of the frailty phenotype in stable COPD and demonstrates that physical frailty is amenable to treatment with pulmonary rehabilitation.

 

Open access full text: 

http://m.thorax.bmj.com/content/early/2016/06/06/thoraxjnl-2016-208460.full

Other papers in peer reviewed journals:

Smith C, Bosanquet N, Riley J, Koffman J. Loss, transition and trust: perspectives of terminally ill patients and their oncologists when transferring care from the hospital into the community at the end of life. BMJ Support Palliat Care. 2016. doi: 10.1136/bmjspcare-2015-001075

Maddocks M, Kerry R, Turner A, Howick J. Problematic placebos in physical therapy trials. J Eval Clin Pract. 2016. doi: 10.1111/jep.12582.

Maddocks M, Kon SSC, Canavan JC, Jones SE, Nolean CM, Labey A, Polkey MI, Man WD. Physical frailty and pulmonary rehabilitation in COPD: a prospective cohort study. Thorax. doi:10.1136/thoraxjnl-2016-208460. Epub 2016 Jun 13.

Lokker ME, Gwyther L, Riley JP, van Zuylen L, van der Heide A, Harding R. The Prevalence and Associated Distress of Physical and Psychological Symptoms in Patients With Advanced Heart Failure Attending a South African Medical Center. The Journal of cardiovascular nursing. 2016;31(4):313-22.

Guo P, Harris R. The effectiveness and experience of self-management following acute coronary syndrome: A review of the literature. International Journal of Nursing Studies. 2016;61: 29-51.

Schildmann EK, Groeneveld EI, Denzel J, Brown A, Bernhardt F, Bailey K, Guo P, Ramsenthaler C, Lovell N, Higginson IJ, Bausewein C, Murtagh FE. Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale. Palliat Med. 2016;30(6):599-610.

May

Featured publication:

Etkind SN, Bristowe K, Bailey K, Selman LE, Murtagh FE. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med. 2016. doi: 10.1177/0269216316647610

In this qualitative study we aimed to explore how uncertainty affects the lives of people living with advanced illness, and patient responses to uncertainty. We looked at thirty in-depth interviews with people suffering from a range of advanced illnesses.

We found that information needs, engagement with healthcare, and focus on the present day versus the future were key factors affecting how people responded to uncertainty.  These findings will help professionals to understand what is important to their patients in situations of uncertainty and so be better prepared to meet their needs.

Other papers in peer reviewed journals:

Soares DD, Nunes CM, Gomes B. Effectiveness of Emergency Department Based Palliative Care for Adults with Advanced Disease: A Systematic Review. J Palliat Med. 2016. doi:10.1089/jpm.2015.0369

Etkind SN, Koffman J. Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care. Postgrad Med J. 2016. doi:10.1136/postgradmedj-2015-133371

McLean S, Gomes B, Higginson IJ. The intensity of caregiving is a more important predictor of adverse bereavement outcomes for adult-child than spousal caregivers of patients who die of cancer. Psychooncology. 2016. DOI: 10.1002/pon.4132

Perera G, Stewart R, Higginson IJ, Sleeman KE. Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study. Age Ageing. 2016. doi: 10.1093/ageing/afw077

van Vliet LM, Gao W, DiFrancesco D, Crosby V, Wilcock A, Byrne A, Al-Chalabi A, Chaudhuri KR, Evans C, Silber E, Young C, Malik F, Quibell R, Higginson IJ. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC neurology. 2016;16(1):63.

Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016. doi: 10.1136/postgradmedj-2015-133368

Manthalu G, Yi D, Farrar S, Nkhoma D. The effect of user fee exemption on the utilization of maternal health care at mission health facilities in Malawi. Health Policy and Planning. 2016. DOI: 10.1093/heapol/czw050 Online first 11 May 2016.

April

Featured publication:

Gaertner J, Siemens W, Daveson BA, Smith M, Evans CJ, Higginson IJ, Becker G. Of apples and oranges: Lessons learned from the preparation of research protocols for systematic reviews exploring the effectiveness of Specialist Palliative Care. BMC Palliat Care. 2016;15(1):43.

This paper shares the methodological discussion that occurred between two research groups working together on two separate protocols for Cochrane systematic reviews exploring the effectiveness of specialist palliative care. Discussion centred on the need for methodological consistency in definitions of population, intervention and outcome. Recommendations are made to guide future similar reviews and the design of clinical trials.  

Other papers in peer reviewed journals:

Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials. 2016;17(1):1-16.

 

March

Featured publications:

Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, Higginson IJ, Daveson BA. Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review. BMC Med. 2016;14(1):38. doi: 10.1186/s12916-016-0582-x.

In this review, we identified 32 measures to assess symptoms in people with dementia in long-term care. Pain measures were best developed and validated. Oral health, discomfort and psychological wellbeing measures require further validation, while depression measures were poor at detecting depression. No multi-symptom measure to support comprehensive assessment and monitoring in this population was identified.

The full article is available free here:

 https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0582-x

 Turner-Stokes L, Williams H, Bill A, Bassett P, Sephton K. Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: a multicentre cohort analysis of a national clinical data set. BMJ Open. 2016;6:e010238 doi:10.1136/bmjopen-2015-010238

 This paper reports the first 5-year analysis of the UK Rehabilitation Outcomes Collaborative (UKROC) national clinical dataset for rehabilitation. The analysis of prospectively collected real-life clinical  data from 5379 case episodes across all 62 specialist rehabilitation services in England demonstrates that rehabilitation is highly cost-efficient for all neurological conditions, producing substantial savings in ongoing care costs, especially in high-dependency patients.

 The mean saving of nearly £500 per week in care-costs translates to an average estimated life-time saving of £650,000 per patient, or £3.7 billon for the whole study sample- making rehabilitation potentially one of the most cost-efficient interventions in NHS practice.

Other publications:

Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016. doi: 10.1177/0269216316634601

Davies JM, Gao W, Sleeman KE, Lindsey K, Murtagh FE, Teno JM, Deliens L, Wee B, Higginson IJ, Verne J. Using routine data to improve palliative and end of life care. BMJ Support Palliat Care. 2016. doi: 10.1136/bmjspcare-2015-000994.

Hepgul N, King S, Amarasinghe M, Breen G, Grant N, Grey N, Hotopf M, Moran P, Pariante CM, Tylee A, Wingrove J, Young AH, Cleare AJ. Clinical characteristics of patients assessed within an Improving Access to Psychological Therapies (IAPT) service: results from a naturalistic cohort study (Predicting Outcome Following Psychological Therapy; PROMPT). BMC psychiatry. 2016;16(1):52.

Lowther K, Harding R, Ahmed A, Gikaara N, Ali Z, Kariuki H, Sherr L, Simms V, Selman L. Conducting experimental research in marginalised populations: clinical and methodological implications from a mixed-methods randomised controlled trial in Kenya. AIDS care. 2016:1-4. doi:10.1080/09540121.2016. 1146214

February

Featured publications:

Ashford S, Jackson D, Mahaffey P, Vanderstay R, Turner-Stokes L. Conceptualization and Development of the Leg Activity Measure (LegA) for Patient and Carer Reported Assessment of Activity in the Paretic Leg. Physiotherapy research international : the journal for researchers and clinicians in physical therapy. 2016  Feb 16. doi: 10.1002/pri.1660

The aim was to develop a patient reported outcome measure (PROM) of active and passive function in the paretic lower limb. Potential items for inclusion were identified through a) systematic review and analysis of existing measures and b) analysis of the primary goals for treatment in a spasticity service.

Higginson IJ, Rumble C, Shipman C, Koffman J, Sleeman KE, Morgan M, Hopkins P, Noble J, Bernal W, Leonard S, Dampier O, Prentice W, Burman R, Constantini M. The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories. BMC Anaesthesiology. 2016;16(1):11. doi: 10. 1186/s12871-016-0177-2.  The full article is available for free (worldwide) here: http://bmcanesthesiol.biomedcentral.com/articles/10.1186/s12871-016-0177-2

How are clinical decisions made? Is uncertainty always a bad thing? We tried to find out in this ethnographic study in two Intensive Care Units in an inner city hospital. We found four distinct trajectories of curative and/or comfort decision-making. Conflict occurred most commonly in oscillating trajectories. Some families considered decision-making was negative and preferred uncertainty. Families were most often involved in decision-making regarding care outcomes. The results suggest that rather than waiting for specific technical decisions or the end of life, early communication to understand values and preferred care outcomes is important.

Other papers in peer reviewed journals:

Boland JW, Reigada C, Yorke J, Hart SP, Bajwah S, Ross J, Wells A, Papadopoulos A, Currow D.C, Grande G, Macleod U, Johnson MJ. The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease. J Palliat Med. 2016 [Epub ahead of print]

Turner K, Tookman A, Bristowe K, Maddocks M. ‘I am actually doing something to keep well. That feels really good’: Experiences of exercise within hospice care. Progress in Palliative Care.0(0):null. doi: http://dx.doi.org/10.1080/09699260.2015.1123441


Editorials:

Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care. 2016;6(1):2-4.

 

January

Featured publication

Calanzani N, Higginson IJ, Koffman J, Gomes B (2016) Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PLoS ONE 11(1): e0146134. doi:10.1371/journal.pone.0146134

In this paper we examine the differences between people who took part in the QUALYCARE postal bereavement survey and those who did not participate despite being invited. Reasons for not taking part are also provided. We found that out study better reached relatives of older patients, while patients dying in hospitals were underrepresented. Common reason for not taking part were related to the study itself (e.g. a long questionnaire), to the relative (e.g. lack of knowledge about care received by the patient) and grief. Future studies may be able to increase participation by adapting survey materials, although relatives who are grieving may not wish to take part (and their wishes must be respected).

The full article is available for free (worldwide) here: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0146134

Papers in peer review journals

Gough N, Ross JR, Riley J, Judson I, Koffman J. 'When something is this rare ... how do you know bad really is bad...?'-views on prognostic discussions from patients with advanced soft tissue sarcoma. BMJ Support Palliat Care. 2015. Dec 28. pii: bmjspcare-2015-000898. doi: 10.1136/bmjspcare-2015-000898

Maharaj S, Harding R. The needs, models of care, interventions and outcomes of palliative care in the Caribbean: a systematic review of the evidence. BMC Palliat Care. 2016;15(1):9.

Letters

Currow DC, Abernethy AP, Allcroft P, Banzett RB, Bausewein C, Booth S, Carrieri-Kohlman, V. Davidson P, Disler R, Donesky D, Dudgeon D, Ekstrom M, Farquhar M, Higginson IJ, Janssen D, Jensen D, Jolley C, Krajnik M, Laveneziana P, McDonald C, Maddocks M, Morelot-Panzini C, Moxham J, Mularski RA, Noble S, O'Donnell D, Parshall MB, Pattinson K, Phillips J, Ross J, Shwartzstein RM, Similowski T, Simon ST, Smith T, Wells A, Yates P, Yorke J, Johnson MJ. The need to research refractory breathlessness. Eur Respir J. 2016;47(1):342-3.

2015 - list of all publications in 2015 (pdf)

December

Featured publication

Maddocks M, Nolan CM, Man WDC, Polkey MI, Hart N, Gao W, Rafferty G, Moxham J, Higginson, IJ. Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: a randomised double-blind, placebo-controlled trial. The Lancet Respiratory MedicineDOI: http://dx.doi.org/10.1016/S2213-2600(15)00503-2

Our randomised trial showed that 6 weeks of daily thigh muscle stimulation improved functional exercise capacity in breathless people with severe lung disease, many of who were unable to engage in conventional pulmonary rehabilitation. The full article is available via Open Access via: http://www.thelancet.com/journals/lanres/article/PIIS2213-2600(15)00503-2/fulltext

Other papers in peer review journals

Collins ES, Witt J, Bausewein C, Daveson BA, Higginson IJ, Murtagh FE. A Systematic Review of the Use of the Palliative Care Outcome Scale and the Support Team Assessment Schedule in Palliative Care. J Pain Symptom Manage. 2015.

Guo P, Watts K, Wharrad H. An integrative review of the impact of mobile technologies used by healthcare professionals to support education and practice. Nursing Open. 2015:n/a-n/a.

Too W, Watson M, Harding R, Seymour J. Living with AIDS in Uganda: a qualitative study of patients' and families' experiences following referral to hospice. BMC Palliat Care. 2015;14(1):67.

Daveson BA, de Wolf-Linder S, Witt J, Newson K, Morris C, Higginson IJ, Evans C. Results of a transparent expert consultation on patient and public involvement in palliative care research. Palliat Med. 2015;29(10):939-49.

Magee WL, Siegert RJ, Taylor SM, Daveson BA, Lenton-Smith G. Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): Reliability and Validity of a Measure to Assess Awareness in Patients with Disorders of Consciousness. Journal of music therapy. 2015.

November

Featured publication

Kane PM, Murtagh FE, Ryan K, Mahon NG, McAdam B, McQuillan R, Ellis-Smith C, Tracey C, Howley C, Raleigh C, O’Gara G, Higginson IJ, Daveson B. The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure. Heart Fail Rev. 2015. doi:10.1007/s10741-015-9508-5

This systematic review of patient-centred care (PCC) interventions in chronic heart failure patients identified 15 articles on 10 studies involving 2540 patients.  Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation.  PCC interventions reduce symptom burden, improve health-related quality of life and enhance patient engagement. 

Other papers in peer review journals

Selman L, Robinson V, Klass L, Khan S, George R, Shepherd K, Burman R, Koffman J. Improving confidence and competence of healthcare professionals in end-of-life care: an evaluation of the ‘Transforming End of Life Care’ course at an acute hospital trust. BMJ Supportive & Palliative Care. 2015.

Letters to Editors

Harding R, Downing J, Ekstrand M, Gwyther L, Sherr L. Evidence-Based Programming of HIV Care and Support: Is the Psychosocial "Optional"? Journal of acquired immune deficiency syndromes 2015;70(5):e176-7. doi: 10.1097/QAI.0000000000000713

Clinical Update

Kilbride C, Ashford S. Baird T, Hoffman K, Tuckey J. Clinical Update: Guideline on splinting. Frontline. Nov 2015; 21(19)

October

Featured publication

van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ. How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design. BMC Med. 2015;13(1):263.

Clinicians request guidance to aid the routine use and interpretation of Patient Reported Outcome Measures (PROMs), but tools are lacking. We aimed to develop a Clinical Decision Support Tool (CDST) focussed on: information needs, family anxiety, depression and breathlessness (measured using the Palliative care Outcome Scale (POS)) and related PROM implementation guidance.

 This CDST provides a straightforward guide to help support clinical care and improve evidence-based outcomes for patients with progressive illness and their families, addressing 4 areas of clinical uncertainty. Recommendations should be used flexibly, alongside skilled individual clinical assessment and knowledge, taking into account patients' and families' individual preferences, circumstances and resources. The CDST is provided with accompanying implementation guidance to facilitate PROM use.

Other papers in peer review journals

Gysels M, Reilly CC, Jolley CJ, Pannell C, Spoorendonk F, Bellas H,Madan P, Moxham J, Higginson I.J, Bausewein, C. How does a new breathlessness support service affect patients? Eur Respir J. 2015 doi: 10.1183/13993003.00751-2015

Powell RA, Ali Z, Luyirika E, Harding R, Radbruch L, Mwangi-Powell FN. Out of the shadows: non-communicable diseases and palliative care in Africa. BMJ Support Palliat Care. 2015.doi: 10.1136/bmjspcare-2014-000751

Kane PM, Murtagh FE, Ryan K, Mahon NG, McAdam B, McQuillan R, Ellis-Smith C, Tracey C, Howley C, Raleigh C, O’Gara G, Higginson IJ, Daveson B. The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure. Heart Fail Rev. 2015. doi:10.1007/s10741-015-9508-5

Schildmann EK, Groeneveld EI, Denzel J, Brown A, Bernhardt F, Bailey K, Guo P, Ramsenthaler C, Lovell N, Higginson IJ, Bausewein C, Murtagh FE. Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale. Palliat Med. 2015. doi: 10.1177/0269216315608348

Gomes B, Calanazani N, Koffman J, Higginson IJ. Is dying in hospital better than dying at home in incurable cancer and what factors influence this? A population-based study. BMC Medicine 2015 DOI: 10.1186/s12916K015K0466K5.

van der Geest IM, van den Heuvel-Eibrink MM, van Vliet LM, Pluijm SM, Streng IC, Michiels EM, Pieters R, Darlington AE. Talking about Death with Children with Incurable Cancer: Perspectives from Parents. The Journal of pediatrics. 2015. Doi: 10.1016/j.jpeds.2015.08.066


Editorial

Currow DC, Higginson IJ. Cochrane Reviews: Four Proposals for Improvement. J Palliat Med. 2015. doi: 10.1089/jpm.2015.0382

September

Featured Publication

Sleeman KE, Koffman J, Bristowe K, Rumble C, Burman R, Leonard S, Noble J, Dampier O, Bernal W, Morgan M, Hopkins P, Prentice W, Higginson IJ. ‘It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care. BMJ open. 2015;5(9) doi:10.1136/bmjopen-2015-008242

In this paper we seek to understand more about what went wrong with the implementation of the LCP. We made use of qualitative data that had been collected in 2009 as part of a mixed methods study to develop a tool to improve care of the dying in Intensive Care Units. In the study 25 health care professionals (nurses, doctors, social workers, in various specialties) were interviewed about their experiences with using integrated care pathways for the dying (including the Liverpool Care Pathway and its derivatives).

The study provides important messages for the development and implementation of future tools that aim to guide care of the dying. First, that comprehensive education and training in palliative care is critical. Second, our study highlights the importance of grounding any future tool around patient and carer reported outcomes; professionals, particularly the most junior, may need to be re-orientated from processes of care (whether morphine is prescribed) to outcomes (whether pain is relieved). Last, the study demonstrates the importance of collecting, reporting and using qualitative data when developing and implementing interventions.

Other papers in peer review journals

Harding R, Luyirika E. Palliative Care for People with Haematological Cancers.  Tropical Hemato-Oncology: Springer; 2015. p. 557-62 Published online August 2015 doi: 10.1007/978-3-319-18257-5_57

Downing J, Powell RA, Marston J, Huwa C, Chandra L, Garchakova A, Harding, R. Children's palliative care in low- and middle-income countries. Arch Dis Child. Published online September 2015 doi:10.1136/archdischild-2015-308307

Reilly CC, Bausewein C, Pannell C, Moxham J, Jolley CJ, Higginson IJ. Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey. Palliat Med. 2015. DOI: 10.1177/0269216315600103

Lowney AC, Myles HT, Bristowe K, Lowney EL, Shepherd K, Murphy M, et al. Understanding What Influences the Health-Related Quality of Life of Hemodialysis Patients: A Collaborative Study in England and Ireland. J Pain Symptom Manage. 2015. Published online before print August 20 2015 DOI: 10.1016/j.jpainsymman.2015.07.010

Collins ES, Witt J, Bausewein C, Daveson BA,Higginson IJ, Murtagh F. A systematic review of the use of the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) in palliative care. Journal of Pain and Symptom Management. 2015. Published online before print August 31 2015. doi: 10.1016/j.jpainsymman.2015.07.010.

Ashford S, Fheodoroff K, Jacinto J, Turner-Stokes L. Common goal areas in the treatment of upper limb spasticity: A multicentre analysis. Clin Rehabil. 2015. Published online before print July 3, 2015, doi: 10.1177/0269215515593391

Correspondence

  1. Harding R. Response to 'Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries'. J Epidemiol Community Health. 2015. doi: 10.1136/jech-2015-206362 Published online August 26 2015
August

Featured Publication

Henson L, Gomes B, Koffman J, Daveson B, Higginson IJ, Gao W. Factors associated with aggressive end of life cancer care. Supportive Care in Cancer. 2015:1-11. Published on August 8 2015 doi: 10.1007/s00520-015-2885-4

Many patients with cancer experience overly aggressive care towards the end of life despite evidence of an association with poor outcomes such as prolonged pain and overall dissatisfaction. Our paper investigated factors associated with such care, including the influence of community palliative care services and found a significant reduction in odds of aggressive care for patients in receipt of community health care services such as GP home visits, district nursing and palliative care. 

 Other publications - peer review journals

Fegg M, Lehner M, Simon ST, Gomes B, Higginson IJ, Bausewein C. [What influences end-of-life decisions?: Results of a representative German survey]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 2015 Published on August 14 2015 doi: 10.1007/s00103-015-2219-1

Canavan JL, Maddocks M, Nolan CM, Jones SE, Kon SS, Clark AL, et al. Functionally Relevant Cut Point for Isometric Quadriceps Muscle Strength in Chronic Respiratory Disease. American journal of respiratory and critical care medicine. 2015;192(3):395-397 Published online 1 August 2015 doi: 10.1164/rccm.201501-0082LE

(MSc Student) Martin S. Best interest clinical decision making for care home residents with advanced dementia. The British journal of general practice: the journal of the Royal College of General Practitioners. 2015;65(637):427-8. Published online 1 August doi: 10.3399/bjgp15X686293

Brito M, Gomes B. Non-cancer palliative care in the community needs greater interprofessional collaboration to maintain coordinated care and manage uncertainty. Evidence-based nursing. 2015;18(3):79. Published online on 19 February 2015 doi: 10.1136/eb-2014-102029

Sarmento VP, Higginson IJ, Ferreira PL, Gomes B. Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world. Palliat Med. 2015. Published online on 15 July 2015 doi: 10.1177/0269216315594974

Singh T, Harding R . 'Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes' BMC Research Notes, vol 8. Published online on 30 April 2015 doi: 10.1186/s13104-015-1102-3.

O'Sullivan G, Harding R. Transition: the experiences of support workers caring for people with learning disabilities towards the end of life. BMJ Support Palliat Care. 2015. Published on July 17 2015 doi:10.1136/bmjspcare-2014-000771

In press articles

Grande AJ, Silva V, Maddocks M. Exercise for cancer cachexia in adults: Executive summary of a Cochrane Collaboration systematic review. 2015. Journal of Cachexia, Sarcopenia and Muscle.

Reilly C, Bausewein C, Pannell C, Moxham, J, Jolley C J, Higginson IJ. Patients’ experiences of a new integrated breathlessness support service (BSS) for patients with refractory breathlessness: results of a postal survey, 2015. Palliative Medicine

Gysels M, Reilly C, Jolley CJ, Pannell C, Femke Spoorendonk, Bellas H, Madan P, Moxham J, Higginson IJ, Bausewein C. How does a new breathlessness support service affect patients? 2015. European Respiratory Journal

Correspondence

Hutchinson A, Booth S, Currow D, Higginson IJ, Johnson M. Invisible suffering: breathlessness in and beyond the clinic—a reply. The Lancet Respiratory Medicine. 2015;3(8):e29 Published online on 2 August 2015 doi: 10.1016/S2213-2600(15)00232-5

July

Featured publication

 

Bajwah S,  Ross J.R, Athol U Wells A.U, Kabir Mohammed K, Christina Oyebode C, Surinder S Birring S.S, Amit S, Patel A.S, Koffman J, Higginson I.J, Riley J.  Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention Thorax doi:10.1136/thoraxjnl-2014-206583

Those affected by advanced fibrotic interstitial lung diseases have many unmet symptom and psychological needs. Case conferencing has been proposed to address these issues, but requires evaluation. In this study we aimed to obtain information on the impact of a case conference intervention delivered in the home (Hospital2Home) on palliative care concerns of patients and their carers, and to evaluate feasibility and acceptability. Hospital2Home was trialled at a specialist centre using a Phase II fast-track randomised controlled trial with qualitative interviews. The primary outcome for effect was mean change from baseline of Palliative Care Outcome Scale (POS). Secondary outcomes included symptom control, quality of life, consent and recruitment rates. We recruited 53 patients (26 fast-track, 27 controls). Mean POS scores at 4 weeks were −5.7 fast-track vs −0.4 control, (mean change difference between the two arms was −5.3 (95% CI −9.8 to −0.7) independent t test p=0.02). The secondary outcomes of quality of life, anxiety and depression were superior in the fast-track arm. Qualitative findings corroborate these data. Community case conferences improve palliative symptoms and quality of life after 4 weeks. Hospital2Home for the most part is both feasible and acceptable.

Other publications - peer review journals

Lowney AC, Myles HT, Bristowe K, Shepherd K, Murphy M, O'Brien T, Casserly L, McQuilan R, Plant WD, Conlon PJ, Vinen C, Eustace JA, and Murtagh FEM. Understanding what influences the health-related quality of life of our haemodialysis patients: a collaborative study in England and Ireland. Journal of Pain and Symptom Management, 2015.

Sleeman K, Koffman J, Bristowe K, Rumble C, Burman R, Leonard S, Noble J, Dampier O, Bernal W, Hopkins P, Prentice W, Higginson IJ (accepted). 'It doesn't do the care for you': a qualitativestudy of health care professionals' perceptions of the benefits and harms of Integrated Care Pathways for end of life care prior to the Neuberger Review. BMJ Open.

June

Featured publication

 

Lowther K, Selman L, Simms V, Gikaara N, Ahmed A, Ali Z, Kariuki H, Sherr L, Higginson IJ, Harding R.  Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial.  Lancet Infectious Diseases. Published Online: 15 June 2015. 

(available free of charge) http://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(15)00111-3/fulltext

The TOPcare Trial has been published this month in Lancet Infectious Diseases. In light of the high prevalence of problems that persist for people on HIV treatment http://www.ncbi.nlm.nih.gov/pubmed/24602830 and evidence from East Africa that psychosocial problems are greatest http://www.ncbi.nlm.nih.gov/pubmed/23431405 we designed the TOPcare trial. Given recent UNAIDS policy of “90x90x90” (i.e. that 90% of the world’s population of people living with HIV will be tested, that 90% of these will be on treatment, and 90% of these will have a good response), simple effective ways of managing patient problems on ART are urgently needed.

TOPcare conducted an experimental evaluation of a simple training programme and care protocol for existing clinic nurses in a hospital outpatient clinic setting in Mombasa, Kenya. The training programme taught the principles and practice of palliative care, with the aim of improving the person-centeredness of care. Those patients in the experimental arm reported statistically significant improvements in mental health dimension of quality of life, psychiatric morbidity, and psychosocial problems. No effect was found for pain or physical dimension of quality of life.

 

Other publications in peer review journals

Selman LE, Beynon T, Radcliffe E, Whittaker S, Orlowska D, Child F, et al. 'We're all carrying a burden that we're not sharing': a qualitative study of the impact of cutaneous T-cell lymphoma on the family. The British journal of dermatology. 2015;172(6):1581-92.

Pivodic L, Harding R, Calanzani N, McCrone P, Hall S, Deliens L, et al. Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors. Palliat Med. 2015. Published online on 2 June 2015. doi: 10.1177/0269216315589213.

Andiappan M, Gao W, Bernabé E, Kandala N-B, Donaldson AN. Malocclusion, orthodontic treatment, and the Oral Health Impact Profile (OHIP-14): Systematic review and meta-analysis. The Angle Orthodontist. 2015;85(3):493-500.

Bausewein C, Daveson BA, Currow DC, Downing J, Deliens L, Radbruch L, et al. EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services - Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med. 2015. Published online on 11 June 2015. doi: 10.1177/0269216315589898.

McAteer A, Yi D, Watson V, Norwood P, Ryan M, Hannaford PC, et al. Exploring preferences for symptom management in primary care: a discrete choice experiment using a questionnaire survey. The British journal of general practice : the journal of the Royal College of General Practitioners. 2015. Published on 15 June 2015. doi: 10.3399/bjgp15X685705.

Lifford KJ, Witt J, Burton M, Collins K, Caldon L, Edwards A, et al. Understanding older women's decision making and coping in the context of breast cancer treatment. BMC medical informatics and decision making. 2015;15:45.

Moens K, Houttekier D, Van den Block L, Harding R, Morin L, Marchetti S, et al. Place of death of people living with Parkinson's disease: a population-level study in 11 countries. BMC Palliat Care. 2015;14:28.

Pike S, Lannin NA, Cusick A, Wales K, Turner-Stokes L, Ashford S. A systematic review protocol to evaluate the psychometric properties of measures of function within adult neuro-rehabilitation. Systematic reviews. 2015;4(1):86.

Correspondence 

Wosahlo P, Maddocks M. Benchmarking the provision of palliative rehabilitation within the hospice setting. Palliat Med. 2015;29(5):477-8.

In press article

Ashford S, Jacinto J, Fheodoroff K, Turner-Stokes L. (in press) Common goal areas in the treatment of upper limb spasticity: a multicentre analysis. Clinical Rehabilitation.

May

Featured publication

Osborne TR, Ramsenthaler C, Schey SA, Siegert RJ, Edmonds PM, Higginson IJ. (2015). Improving the assessment of quality of life in the clinical care of myeloma patients: the development of the Myeloma Patient Outcome Scale (POS). BMC Cancer, 15, 280.

Multiple myeloma is an incurable cancer of the bone marrow. Despite extensive needs patients seldom receive palliative care. This study aimed to develop and test a new myeloma-specific quality of life questionnaire, the MyPOS. The MyPOS was developed based on qualitative interviews with patients. Its psychometric properties were evaluated in a multi-centre study across 14 hospital trusts in England with 380 patients. The MyPOS demonstrated excellent reliability and structural and construct validity. It was able to discriminate among subgroups of myeloma patients, mainly those in different phases of disease, among those with different performance status and among those receiving or not receiving chemotherapy. Mean time to complete was 7 minutes 19 seconds. The MyPOS is suitable for clinical use.

Other publications in peer review journals

Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briancon S, Cullen R, Garneata L, Jager KJ, Lonning K, Metcalfe W, Morton RL, Murtagh FEM, et al. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association. 2015. Published online 16 May 2015. doi: 10.1093/ndt/gfv209.


Harding R, Gao W, Jackson D, Pearson C, Murray J, Higginson IJ. Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia and Acquired Brain Injury. Journal of Pain and Symptom Management. 2015. Published online 23 April 2015.        doi:10.1016/j.jpainsymman.2015.04.005.

Martin NH, Lawrence V, Murray J, Janssen A, Higginson IJ, Lyall R, Burman R, et al. Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis. Qualitative health research. 2015. Published online 27 April 2015. doi: 10.1177/1049732315583661.

Hussain JA, Flemming K, Murtagh FEM, Johnson MJ. Patient and Health Care Professional Decision-Making to Commence and Withdraw from Renal Dialysis: A Systematic Review of Qualitative Research. Clin J Am Soc Nephro. 2015. Published online on 5 May 2015. doi: 10.2215/CJN.11091114.

Turner-Stokes L, Rose H, Ashford S, Singer BA. Patient engagement and satisfaction with goal planning: Impact on outcome from rehabilitation. International Journal of Therapy and Rehabilitation. 2015;22(5):210-6.

Daveson SN, Levin A, Moss AH, Jha V, Brown EA, Brennan F, Murtagh FEM, et al. Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care. Kidney Int. 2015. Published online on 29 April 2015. doi: 10.1038/ki.2015.110.

Daveson BA, de Wolf-Linder S, Witt J, Newson K, Morris C, Higginson IJ, Evans C. Results of a transparent expert consultation on patient and public involvement in palliative care research. Palliative Medicine. 2015. Published online on 30 April 2015. doi: 10.1177/0269216315584875.

Daveson BA, Smith M, Yi D, McCrone P, Grande G, Todd C, et al. The effectivness and cost-effectivness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers (Protocol). Cochrane Database of Systematic Reviews. 2015(3):1 -16.

Koffman J, Goddard C, Gao W, Jackson D, Shaw P, Burman R, et al. Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people. BMC Palliat Care. 2015;14(1):13.

Ashford S, Siegert RJ, Alexandrescu R. Rasch measurement: the Arm Activity measure (ArmA) passive function sub-scale. Disabil Rehabil. 2015:1-7.

Martin S, Bristowe K. Last offices: nurses' experiences of the process and their views about involving significant others. Int J Palliat Nurs. 2015;21(4):173-8.

Turner-Stokes L, Bassett P, Rose H, Ashford S, Thu A. Serial measurement of Wessex Head Injury Matrix in the diagnosis of patients in vegetative and minimally conscious states: a cohort analysis. BMJ open. 2015. Published online on 21 April 2015. doi:10.1136/bmjopen-2014-006051.

Sleeman KE, Davies JM, Verne J, Gao W, Higginson IJ. The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993-2012. Palliat Med. 2015 May 19. pii: 0269216315585064. [Epub ahead of print] PubMed PMID: 25991729

Abstract
Evans C, Bone A, Yi D, Wei G, Gomes B, Maddocks M, Sleeman KE, Wright J, McCrone P, Higginson IJ, et al. Factors associated with end of life transition for older adults living at home: analysis of carers' post-bereavement survey. BMJ Supportive & Palliative Care. 2015;5(1):116.

April

Featured publication of the month

Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Caulkin R, Higginson IJ, Koffman J. Care experiences of clinical uncertainty and deterioration, in the face of limited reversibility: a comparative observational study of the AMBER care bundle. Palliat Med. 2015. Published online on 31 March 2015. DOI:10.1177/0269216315578990.

The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1–2 months.  This comparative observational mixed-methods study (qualitative interviews and a followback survey) aimed to examine the experience of care supported by the AMBER care bundle compared to standard care.  Whilst the AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ2 = 4.09, p = 0.04), and higher awareness of their prognosis by patients (χ2 = 4.29, p = 0.04), this was not translated into higher quality communication, and information was judged less easy to understand. Those supported by the AMBER care bundle also described more unresolved concerns about caring for someone at home. Adequately powered comparative evaluation of the AMBER care bundle is urgently needed.

Other publications in peer review journals

Ashford S, Jackson D, Turner-Stokes L. Goal setting, using goal attainment scaling, as a method to identify patient selected items for measuring arm function. Physiotherapy. 2015;101(1):88-94.

Fheodoroff K, Ashford S, Jacinto J, Maisonobe P, Balcaitiene J, Turner-Stokes L. Factors Influencing Goal Attainment in Patients with Post-Stroke Upper Limb Spasticity Following Treatment with Botulinum Toxin A in Real-Life Clinical Practice: Sub-Analyses from the Upper Limb International Spasticity (ULIS)-II Study. Toxins. 2015;7(4):1192-205.

Maddocks M, Jones SE, Kon SSC, Canavan JL, Nolan CM, Clark AL, et al. Sarcopenia definitions: where to draw the line? Response to Scarlata et al. Thorax. 2015.Published online 8 April 2015. doi: doi:10.1136/thoraxjnl-2015-207041.

van der Geest IM, van den Heuvel-Eibrink MM, Falkenburg N, Michiels EM, van Vliet L, Pieters R, et al. Parents' Faith and Hope during the Pediatric Palliative Phase and the Association with Long-Term Parental Adjustment. J Palliat Med. 2015. published online 13 Feb 2015. doi:10.1089/jpm.2014.0287.

Roderick P, Rayner H, Tonkin-Crine S, Okamoto I, Eyles C, Leydon G, Santer M, Klein J, Yao GL, Murtagh FEM, Farrington K, Caskey F, Tomson C, Loud F, Murphy E, Elias R, Greenwood R and O’Donoghue D. A national study of practice patterns in UK renal units in the use of dialysis and conservative kidney management to treat people aged 75 years and over with chronic kidney failure. Health Serv Deliv Res 2015;3(12).

Guideline
Ashford S. Splinting for the prevention and correction of contractures in adults with neurological dysfunction; College of Occupational Therapists and Association of Chartered Physiotherapists in Neurology. London: College of Occupational Therapists; 2015.

March

Featured publications of the month(2)

1) Magee C, Koffman J.  Out-of-hours palliative care: what are the educational needs and preferences of general practitioners?
BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000764
 
Offering genuine choice to patients over place of care and death requires the provision of high-quality palliative care 24/7. Using a self-completion questionnaire this study examined the confidence of out-of-hours general practitioners in symptom control and end of life prescribing, and identifies their educational needs and preferences to inform recommendations for future education.  203 (20.3%) GPs completed the survey. We identify that confidence in key palliative care competences was severely lacking. Educational strategies to address this concern must be targeted at GPs preferences for content and mode of delivery. Specialist palliative care services should engage with out-of-hours providers to support education.

2) Kane PM, Daveson BA, Ryan K, McQuillan R, Higginson IJ, Murtagh FEM. The Need for Palliative Care in Ireland: A Population-Based Estimate of Palliative Care Using Routine Mortality Data, Inclusive of Nonmalignant Conditions. J Pain Symptom Manage 2015;49:726-733. doi: 10.1016/j.jpainsymman.2014.09.011

Palliative care in Ireland is based on a cancer model.  A population-based estimate of generalist and specialist palliative care needs was calculated from routine mortality data (2007-2011) using a method developed by Murtagh et al.  Of 141,807 deaths, eighty percent were from conditions identified as having palliative care needs. 

February

Featured publication of the month

Beynon T, Selman L, Radcliffe E, Whittaker S, Child F, Orlowska D, Morgans C, Morris S, Harding R. 'We had to change to single beds because I itch in the night': A qualitative study of the experiences, attitudes and approaches to coping of patients with Cutaneous T-Cell Lymphoma (CTCL). The British journal of dermatology. 2015. Published online 16 Feb 2015.doi: 10.1111/bjd.13732.

This qualitative study, funded by Dimbleby Cancer Care and conducted by clinical academic partners across King’s Health Partners, has given new understanding of patients’ experience living with a rare and incurable cancer: cutaneous T-cell lymphoma. 

The 19 purposively-selected patients described specific challenges with delayed diagnosis, the broad-ranging impact of CTCL on physical domains (painful hands and feet, temperature regulation problems, pruritus, sleep problems) practical (travel, finances),  social and psychological (self-image, uncertainty). While the physical symptoms associated with the disease, particularly skin discomfort and pruritus, are a significant burden, psychological and social problems appear to be at least as troubling in this population.

January

Featured publication of the month

Maddocks M, Kon SS, Singh SJ, Man WD. Rehabilitation following hospitalization in patients with COPD: Can it reduce readmissions?  Respirology. 2014. Published online on 22 Dec 2014. doi: 10.1111/resp.12454.

Patients with chronic obstructive pulmonary disease (COPD) are often admitted to hospital following an exacerbation of their disease. Rates of readmission are high with more than a third of patients retuning to hospital within 90 days of discharge.  This review examines the evidence for rehabilitation during and following hospitalization as a treatment to reduce readmission rates. It considers modifiable risk factors for readmission, issues around acceptability and uptake, and strategies to help deliver rehabilitation to more patients.  http://onlinelibrary.wiley.com/doi/10.1111/resp.12454/abstract

Henson LA, Gao W, Higginson IJ, Smith M, Davies JM, Ellis-Smith C, Daveson BA. Emergency Department Attendance by Patients With Cancer in Their Last Month of Life: A Systematic Review and Meta-Analysis. J Clin Oncol. 2014. Published online on 22 Dec 2014. pii: JCO.2014.57.3568.

This systematic review and meta-analysis explores factors associated with emergency department (ED) attendance by patients with cancer in their last month of life. The review combined data from 30 studies and over one million patients. An increased likelihood of ED attendance was found for men, persons of black race, patients with lung cancer, and those of lower socioeconomic status. The review also found that patients receiving palliative care were less likely to attend the ED in their last month of life. 

2014 

November

Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respiratory Medicine. 2014; 2(12):979-87.

This was a single-blind randomised control trial assessing the effectiveness of a breathlessness support service in adults with refractory breathlessness and advanced disease. The results showed that the service improved breathlessness mastery (primary outcome), thus, providing robust evidence to support the early integration of palliative care for cancer and non-cancer patients with breathlessness. Also, the results showed that for patients with cancer, survival was better for the group receiving early breathlessness support service than the control group. 

October

HARDING R, Powell RA, Namisango E, Merriman A, Gikaara N, Ali Z, HIGGINSON IJ. Palliative care-related self-report problems among cancer patients in East Africa: a two-country study. Support Care Cancer. 2014;Springer Berlin Heidelberg:1-8.  

This paper, published with colleagues at the Kenyan Hospice Palliative Care Association and the African Palliative Care Association, recruited 210 cancer patients under palliative care. Not only did it discover that around half had an underlying HIV diagnosis, patients’ worst problems on the African POS were pain and information needs. Worst physical function was associated with poorer POS scores. Uganda and Kenya have been described as having relatively good integration of palliative care according to the WHO, and have made good progress in opioid availability, yet pain relief remains a major problem. The burden of information needs demonstrate the importance on focusing on all dimensions of need. The focus on expanding opioid availability must be balanced with expanding other non-medical skills. This paper, published with colleagues at the Kenyan Hospice Palliative Care Association and the African Palliative Care Association, recruited 210 cancer patients under palliative care. Not only did it discover that around half had an underlying HIV diagnosis, patients’ worst problems on the African POS were pain and information needs. Worst physical function was associated with poorer POS scores. Uganda and Kenya have been described as having relatively good integration of palliative care according to the WHO, and have made good progress in opioid availability, yet pain relief remains a major problem. The burden of information needs demonstrate the importance on focusing on all dimensions of need. The focus on expanding opioid availability must be balanced with expanding other non-medical skills.

 

Tonkin-Crine S, Okamoto I, Leydon GM, MURTAGH FE, Farrington K, Caskey F, et al. Understanding by Older Patients of Dialysis and Conservative Management for Chronic Kidney Failure. Am J Kidney Dis. 2014 Oct 7. doi: 10.1053/j.ajkd.2014.08.011

September

ASHFORD S. JACKSON D. TURNER-STOKES, L. (2014) Goal setting, using goal attainment scaling, as a method to identify patient selected items for measuring arm function. Physiotherapy, http://dx.doi.org/10.1016/j.physio.2014.04.001

Following stroke or brain injury, goals for rehabilitation of the hemiparetic upper limb include restoring active function if there is return of motor control or, if none is possible, improving passive function, and facilitating care for the limb. To inform development of a new patient reported outcome measure (PROM) of active and passive function in the hemiparetic upper limb, the Arm Activity measure, we examined functional goals for the upper limb, identified during goal setting for spasticity intervention (physical therapy and concomitant botulinum toxin A interventions).  

August

ETKIND SN, DAVESON BA, Kwok W, WITT J, Bausewein C, HIGGINSON IJ and MURTAGH FEM. Capture, Transfer, and Feedback of Patient-Centered Outcomes Data in Palliative Care Populations: Does It Make a Difference? A Systematic Review. Journal of Pain and Symptom Management 2014. doi: http://dx.doi.org/10.1016/j.jpainsymman.2014.07.010. Article in press. Available online August 2014

Patient centred outcome measures (PCOMs) are a way for patients or their proxies to report on a patient’s symptoms and quality of life. It has been hypothesised that communication between   patients and health professionals will be improved by collecting this information, transferring it to health professionals and feeding it back, and that this may result in benefits to quality of life.

In this paper, we undertook a systematic review of the literature and found 16 articles that addressed this question in palliative care populations.

We found that feedback of PCOMs information did result in improved patient-professional communication and increased symptom recognition. There was also moderate evidence of benefit to emotional and psychological quality of life. However we found no evidence of improvement in overall quality of life. The evidence was largely limited to oncology patients and feedback to physicians. More evidence is needed in non-oncology settings and with feed-back to multi-disciplinary teams. The OACC project is implementing outcome measures in palliative care in South London.

July

Osborne TR, RAMSENTHALER C, DE WOLF-LINDER S, Schey SA, Siegert RJ, EDMONDS PM, HIGGINSON IJ. (2014). Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life. BMC Cancer, 14(1), 496. Doi: 10.1186/1471-2407-14-496.

Multiple myeloma is the second most common haematological cancer in the UK. It is an incurable disease. Treatment decisions are guided by quality of life (QOL) issues, creating a need to monitor QOL in clinical practice. In the last four years, Myeloma UK has funded a project to develop and evaluate a myeloma-specific questionnaire to measure quality of life in clinical practice (the Myeloma Patient Outcome Scale – MyPOS). This paper is the second in a series of three papers describing the development of the MyPOS. Forty interviews with myeloma patients and two focus groups were undertaken to develop a model of QOL in myeloma and to explore the views of patients and staff on existing QOL questionnaires and their use in clinical practice. Patients said that existing questionnaires may not capture all that is important to QOL from perspective of myeloma patients, and often miss items on health service factors or sexual function that are important to patients. Questionnaires for use in the clinical care of myeloma patients should capture the impact of symptoms on activity, participation or emotional status, and avoid simply asking about symptom status. Clinical questionnaires should not be more than 2 pages long and include open questions to give respondents an individualised voice and focus the goals of care on what is most important to patients.

June

EVANS CJ, Ho Y, DAVESON BA, Hall S, HIGGINSON IJ, GAO W, on behalf of the GUIDE Care project. (2014). Place and Cause of Death in Centenarians: A Population-Based Observational Study in England, 2001 to 2010. PLoS Med  11(6), e1001653. doi: 10.1371/journal.pmed.1001653

Centenarians are a rapidly growing demographic group worldwide. This study examined trends in place of death and associations for centenarians in England over 10 years using death registration data for people aged ≥100 years in England  (n=35,867, age range 100-115 years). We examined factors associated with place of death and comparisons with people aged 85-99 years. Centenarian deaths increased 56% in 10 years. Most died in a care home with (26.7%) or without nursing (34.5%) or in hospital (27.2%). Dying with frailty was common with ‘old age’ stated in 75.6% of death certifications.  Centenarians had outlived death from chronic illness. They are a group living with increasing frailty and high risk of death in hospital from pneumonia.

May

Hall S, DAVIES JM, GAO W, HIGGINSON IJ. Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents. Palliat Med. 2014 May 20. pii: 0269216314533740. [Epub ahead of print]

A novel study comparing sources of dignity related distress, using the Patient Dignity Inventory, in advanced cancer patients (N=45) and care home residents (n=60). Characteristics of the samples differed markedly, however, similarities in the dignity related problems reported by both groups suggests a common pathway towards death for malignant and non-malignant disease.

April

KOFFMAN J,  HO Y,  DAVIES JM, GAO W, HIGGINSON IJ.  Does ethnicity affect where people with cancer die? A population based 10 year study. PLOS ONE 2014, Volume 9, Issue 4, e95052 http://tinyurl.com/kn8usmv

We examined patterns in place of death (POD) among those aged over 65 years who died of cancer in London from 2001-2010. We show that country of birth (a proxy for ethnicity for first generation migrants) is associated with POD; hospital deaths were more likely among BAME groups than those born in the UK compared to all other settings. Dying at home or in a hospice, typically the most preferred locations of death, were less likely for BAME groups compared to those born in the UK. Further investigation is needed to determine whether these differences result from patient-centred preferences, which may be culturally patterned, or other environment or service-related factors. This knowledge will enable strategies to be developed to improve access to relevant palliative care and related services, where necessary.

March

SLEEMAN KE, HO YK, Verne J, GAO W, HIGGINSON IJ.  Reversal of English trend towards hospital death in dementia: a population based study of place of death and associated individual and regional factors 2001-2010.  BMC Neurology 2014; 14:59. doi:10.1186/1471-2377-14-59

England has one of the highest rates of hospital death in dementia, but how this has changed over time is not known. This study used death registration data (mortality statistics) to study deaths in dementia over a ten year period. The study, which includes information on almost 400,000 patients’ deaths, shows that the trend towards increasing hospital deaths in dementia in England has reversed, with a reciprocal increase in care home deaths, and that care home bed provision is key to sustain this. The study reveals that very few people with dementia in England die at home or in hospices, and identifies a need to support the end of life preferences for people with dementia.

The study formed part of the GUIDE_Care project (PIs Higginson, Gao) http://www.biomedcentral.com/content/pdf/1471-2377-14-59.pdf

February

DOWNING J, GOMES B, Gikaara N, Munene G, DAVESON BA, Powell RA, et al. Public preferences and priorities for end-of-life care in Kenya: a population-based street survey. BMC Palliat Care. 2014;13(1):4.

This study used a novel methodology to recruit and interview members of the public in Kenya (i.e. a street survey) and provides the first evidence to inform emerging palliative care services and to underpin policy. A majority (56.7%) would always want to know that if they had a serious illness with limited time left, and a greater majority would wish to improve quality over quantity of life left (61.4%). Interestingly, home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. This last data must be appraised in the context of fewer formal resources to enable people to die at home than is found in high income countries. 

The study formed part of the PRISMA project (PIs Higginson and Harding). http://www.biomedcentral.com/1472-684X/13/4/abstract

January

TURNER-STOKES L, McCrone P, JACKSON DM, Siegert RJ et al. The Needs and Provision Complexity Scale: a multicentre prospective cohort analysis of met and unmet needs and their cost implications for patients withcomplex neurological disability. BMJ Open 2013;3:e002353. doi:10.1136/bmjopen-2012-002353

This paper describes a multicentre prospective cohort analysis of service use and costs over 12 months in patients with complex neurological problems discharged from specialist neurorehabilitation units in London.  The results identify underprovision of community-based rehabilitation and support services compared with needs, which may contribute directly to excess care burden and costs to family carers.

MADDOCKS M, Halliday V, Chauhan A, Taylor V, Nelson A, Sampson C, Byrne A, Griffiths G, Wilcock A. Neuromuscular electrical stimulation of the quadriceps in patients with non-small cell lung cancer receiving palliative chemotherapy: a randomized phase II study. PloS one. 2013 Dec 30;8(12):N/A. e86059.

Exercise can be beneficial for people with advanced lung cancer and neuromuscular electrical stimulation (NMES) of the thigh muscles may represent a practical approach. This study examined acceptability of NMES used alongside palliative chemotherapy. Participants were randomized 1:2 to usual care or NMES, where they were asked to undertake 30 minute sessions, ideally daily, but as a minimum three times weekly.  Forty-nine people took part and of those eligible for the primary endpoint, 50% met the minimum level of adherence. Adherence was enhanced by incorporating sessions into a daily routine and hindered by undesirable effects of chemotherapy. In summary, NMES was not generally acceptable in this setting, nor was there a suggestion of benefit. The need remains to explore NMES in other settings.

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