For better end of life care
The QUALYCARE study aimed to examine the quality of care provided to people in their last stages of life.
The study was carried out in 2010 in different parts of London, including Bromley, Islington, Sutton & Merton and Westminster.
We are very grateful to all the 618 people who, having recently lost a friend or relative to cancer, took part in the study by completing the questionnaire.The findings have increased our knowledge of the quality of care and are being used to help improve services locally and nationally.
You can follow our latest news below, and find more information about the study, bereavement and sources of support, and the feedback form at the end of the page.
Meet the team here. For more information, please contact us.
Publications in peer-review journals
Gomes B, Calanzani N, Koffman J, Higginson IJ. Is dying in hospital better than home in incurable cancer and what factors influence this? A population‐based study. BMC Medicine 2015. doi: 10.1186/s12916-015-0466-5
Calanzani N, Higginson IJ, Koffman J, Gomes B. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PLoS ONE 2016; 11(1): e0146134. doi:10.1371/journal.pone.0146134
McLean S, Gomes B, Higginson I. 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 May 2, 2016. doi: 10.1002/pon.4132
Henson LA, Gomes B, Koffman J, Daveson BA, Higginson IJ, Gao W, on behalf of BuildCARE. Factors associated with aggressive end of life cancer care. Support Care Cancer August 8, 2015. doi: 10.1007/s00520-015-2885-4
Pivodic L, Harding R, Calanzani N, McCrone P, Hall S, Deliens L, Higginson I, Gomes B, on behalf of EURO IMPACT. Home care by general practitioners for
cancer patients in the last 3months of life: An epidemiological study of quality and associated factors. Palliat Med June 2, 2015, doi: 10.1177/0269216315589213
Gomes B, McCrone C, Hall S, Riley J. Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey. Support Care Cancer 2013; 21:2835-44. doi: 10.1007/s00520-013-1848-x
Koffman J, Higginson IJ, Hall S, Riley J, McCrone P, Gomes B. Bereaved relatives' views about participating in cancer research. Palliat Med 2012; 26(4):379-83. doi: 10.1177/0269216311405091
Higginson IJ. Hall S, Koffman J, Riley J, Gomes B. Time to get it right: are preferences for place of death more stable than we think? Palliat Med 2010; 24(3):352-3. doi:10.1177/0269216309360489
Gomes B, McCrone P, Hall S, Koffman J, Higginson I. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study. BMC Cancer 2010; 10:400. doi:10.1186/1471-2407-10-400
UPCOMING - QUALYCARE at the 9th World Research Congress of the EAPC
Barbara Gomes will participate in the themed session on mortality followback surveys in end of life care research with the presentation How to plan mortality followback survey: study design issues and assessment tools. More on the congress program here.
Factors associated with participation in QUALYCARE published in PLOS ONE in January 2016
In this paper, Natalia Calanzani and colleagues examine the differences between people who agreed to take part in the QUALYCARE study and those did not take part despite receiving an invitation. The authors also describe the reasons non-participants gave to refuse participation. The findings show that relatives who were female and relatives of patients who were aged 90+ were more likely to return a completed questionnaire. On the other hand, relatives of patients who died in hospital and relatives who were not the patient’s spouse or partner were less likely to return the questionnaire. Among non-participants, 205 explained why they refused participation and often there was more than one reason for doing so. The most common reasons for refusal were related to the study itself (e.g. questionnaire was too long), to the relative (e.g. person did not have enough knowledge to complete the questionnaire) and to grief (e.g. being too upset to take part).
The findings show that our survey better reached relatives of older patients while those dying in hospitals were underrepresented. The characteristics of the bereaved relatives played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. The results on reasons for refusal suggest that changes in study materials may help to increase participation in similar bereavement surveys in the future, although a number of people might not take part because they are grieving (even if the questionnaire is developed in a very sensitive manner), and their wishes must be respected. This is important because mortality followback surveys such as QUALYCARE are frequently used to evaluate end of life care, not only in the UK but also elsewhere in the world.
The manuscript is freely available worldwide and can be accessed here.
Main paper published in BMC Medicine in October 2015
One of the key aims of the QUALYCARE study was to examine preferences and outcomes associated with death at home for people with incurable cancer. The findings are now reported in a scientific paper published by the journal BMC Medicine.
We found that dying at home leads to more peace and less grief but requires wider support. Specifically, patients who died at home experienced more peace and a similar amount of pain in their last week of life compared to those who die in hospital, and their relatives also experience less grief. However, the results show that in order to achieve a home death a wide response from services is needed. It requires discussion of preferences, access to a comprehensive home care package and more support to family caregivers.
The paper is freely available worldwide, access here. Read the press release and the policy brief with recommendations. See also the CSI news.
QUALYCARE at ASCO Palliative Care in Oncology Symposium in Boston, USA
Sarah McLean presented a poster “The influence of caregiver burden on bereavement outcomes of spousal and adult-child family caregivers of patients who have died of cancer” at the ASCO Palliative Care in Oncology Symposium. You can read the abstract here and see the poster here.
Analysis of the QUALYCARE study data published in Supportive Care in Cancer in August 2015
Using QUALYCARE data, this paper investigates socio-demographic, clinical and community healthcare service factors associated with aggressive end of life cancer care. The study finds that patients with prostate and haematological cancers are more likely to experience aggressive end of life care, whereas patients who received GP home visits, district nursing and/ or community palliative care are less likely to experience aggressive end of life care. The paper highlights that expansion of community healthcare services, in particular palliative care, may help address the current capacity crises faced by many acute healthcare services. The paper published by the Journal of Supportive Care in Cancer is available worldwide for free here.
Analysis of the QUALYCARE study data published in Palliative Medicine in June 2015
Using QUALYCARE data, this paper investigates factors associated with bereaved relatives’ satisfaction with the home [palliative] care provided by GPs to patients with incurable cancer in their last three months of life. It also describes how specialist palliative care services were more often reported by relatives as proving excellent/very good home care (78% compared to 55% for GPs). The likelihood of high satisfaction with care provided by GPs doubled if GPs made three or more home visits (compared to one or no home visits) and halved if the patient died in hospital (as opposed to at home). The results show that there is still a lot of scope for improving GP home care, and that providing more visits may help to increase caregiver satisfaction. The paper was published by the journal Palliative Medicine and is available worldwide for free here.
Third paper about the QUALYCARE pilot study published in Supportive Care in Cancer in June 2013
The bereaved relatives who took part in the QUALYCARE pilot study were invaluable to improve the QUALYCARE questionnaire. This paper describes further their important contribution. By undertaking cognitive interviewing with 20 participants and testing the questionnaire, we improved the measurement of health outcomes and the use of health and social care services and informal care by people dying from cancer in their last three months of life. Answer options were improved and the tool used to assess grief was changed, amongst other modifications. The scientific journal Supportive Care in Cancer published the paper.
Gomes B, McCrone C, Hall S, Riley J. Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey. Supportive Care in Cancer. Published online 8th June 2013,doi 10.1007/s00520-013-1848-x
Bereaved relatives were able to understand the majority of the questions despite finding them demanding and intense. However, some problems were identified in the way participants understood the questions and formulated their responses. The findings led to several changes to improve measurement.
QUALYCARE study at the 13th World Congress of the European Association for Palliative Care (EAPC) in Prague, May/June 2013
Dr Barbara Gomes (the study coordinator), Natalia Calanzani and Lara Pivodic presented research findings from the QUALYCARE study at the 13thWorld Congress of the EAPC in Prague (Czech Republic). Dr Barbara Gomes presented evidence on how place of death is associated with grief intensity (comparing death at home with death in hospital). Natalia Calanzani presented findings on whether patients and family carers’ preferences are aligned and how often relatives change their minds during patients’ last three months of life. Lara Pivodic talked about care-related factors (such as quality of communication and symptom control) associated with high satisfaction with GP home care. All three presentations were published as abstracts in a special edition of the European Journal of Palliative Care.
QUALYCARE study at the 7th World Research Congress of the EAPC in Trondheim, June 2012
Dr Barbara Gomes (the study coordinator) and Natalia Calanzani presented research findings from the QUALYCARE study at the 7th World Research Congress of the EAPC in Trondheim (Norway). The researchers talked about the socio-demographic differences (e.g. in age, gender, and deprivation levels) between people who answered the questionnaire and people who declined to take part. The researchers also presented the main reasons people gave for refusing to participate in the study. Both presentations have been published as abstracts in the scientific journal Palliative Medicine (June 2012; 26: 384-674).
UK policy makers and local health care teams hear results
We have run seven sessions where we presented and discussed the results with the project steering group, representatives of the Department of Health and local NHS services including health care teams in the community, hospitals and hospices. We provided all four Primary Care Trusts with a summary of the results in their own area. QUALYCARE is informing care improvements both nationally and locally.
Tessa Ing, the Lead of the National End of Life Care Team at the Department of Health, said:
“The QUALYCARE study adds a whole new layer of sophistication to our understanding of how people are cared for at the end of their life. We will use this to help the NHS develop the services which people really want and which will provide the best experience for them and their families.”
Pilot phase published in Palliative Medicine
The contribution of 20 people who participated in the pilot phase has been fundamental to advance the study and to unpick some of the key areas of end of life care that need improvement. The scientific journal Palliative Medicine published the reports.
Koffman J, Higginson IJ, Hall S, Riley J, McCrone P, Gomes B. Bereaved relatives' views about participating in cancer research. Palliative Medicine 2012; 26(4):379-83
As the study developed, it was important to examine how relatives felt about taking part in the study. We found that 11 out of the 20 participants in the pilot phase found it helpful to participate. Some thought the survey was helpful to them because they shared their experience (in the words of one of the participants, it “felt like a therapy in itself”). Six did not think the survey was distressing and five said that although it brought back memories it was good to take part since they could help others in a similar situation.
Higginson IJ. Hall S, Koffman J, Riley J, Gomes B. Time to get it right: are preferences for place of death more stable than we think? Palliative Medicine 2010; 24(3):352-3.
In the pilot study, we found that most patients had a preference for death to take place at home or in a hospice, but preferences were met only for a quarter. Most relatives shared the patient preference and only three changed their mind in the 3 months before death. If family preferences are as stable and in tune with patient preference as our findings suggest, there is little excuse not to offer and provide the care needed for patients to die peacefully where they wish to be.
QUALYCARE study at the 12th World Congress of the EAPC in Lisbon, April 2011
Our study coordinator, Barbara Gomes, presented initial findings at the 12th World Congress of the EAPC in Lisbon (Portugal). She compared the experiences, symptoms and problems (e.g. sense of peace, pain control and family distress) for people who died at home with people who died in hospitals, hospices and care homes. The presentation was published as an abstract in the scientific journal European Journal of Palliative Care (2011; FC10.6).
National Council for Palliative Care highlights QUALYCARE (May 2011)
In their second monthly Policy Round up, the National Council for Palliative Care highlighted the work of QUALYCARE: “it will enrich the evidence base as to what really matters to families and friends in the last months of their loved one’s life and what the lasting impact is when people’s wishes are not met”.
Participants get preview of results (January 2011)
People who took part in the study were the first to receive a preview of the results. We found out great stories where care was exemplary and bad stories where things did not go well. There are lessons to learn with every individual story. If you took part in the study, did not receive the results preview and would like to, please contact us.
Study protocol published in BMC Cancer (August 2010)
The methods used in the QUALYCARE study have been published in the scientific journal BMC Cancer, and are freely available online here
. This aids transparency and is helping others conducting research in this sensitive and complex area.
More information about the study
If you are looking for more information about the study, please read our information leaflet. You can also contact our research team. The QUALYCARE study has been reviewed by an independent group of international scientists and approved by an NHS research ethics committee.
Do you wish to find out more about bereavement and sources of support?
Dealing with the loss of a loved one is not easy. Bereavement can be a distressing experience and remembering the last months of life of a relative or friend takes up time and energy. Writing or talking about it may help but it may also bring back painful memories.
The Royal College of Psychiatrists has produced a leaflet with clear and well-researched information for anyone who has been bereaved, their family and friends, and anyone else who wants to learn more about bereavement. In this leaflet, you will find information about:
- how people normally grieve after a loss
- unresolved grief
- places to get help
- other sources of information
- how friends and relatives can help
More information is available through the Royal College of Psychiatrist's website.