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NPCS - Needs Provision and Complexity Scale for Long Term Neurological Conditions

The National Service Framework (NSF) for Long Term Neurological Conditions (LTNC) promotes joined-up services to provide holistic, person-centred care (Department of Health, 2005). It includes 11 quality Requirements covering the care pathway from diagnosis to death. Critically, integrated care planning (QR1) provides the backbone to the NSF recommendations.

It is recognised, however, that resources to support integrated care planning are currently very limited, and this presents a major threat to implementation of the NSF recommendations. It is vital therefore to be able to evaluate service provision in relation to need, both at an individual and at a population level, in order to focus future service development efficiently.

LTNC are themselves a highly diverse group of conditions, and within those, people have widely different needs for services, against which the adequacy of service provision must be judged.

Diagnosis is a poor determinator of need in this context, and we require some other way of defining need for services. A major limitation in many of the published evaluations of effectiveness of rehabilitation has been failure to describe the nature and dose of rehabilitation interventions, and in particular to relate that to the need for intervention at an individual level.

The Needs and Provision Complexity Scale and its development

To support implementation of the NSF, the UK Department of Health commissioned the NHS Information Centre to develop a LTnC dataset for monitoring implementation and benchmarking performance against the NSF standards. The Needs and Provision Complexity Scale (NPCS) was developed as part of this process as a new measure, designed to measure needs for community care and rehabilitation and to assess provision against these needs.

NPCS development was initiated in 2008 by the LTnC Dataset Development Group. As well as service users and carers, the group consisted of commissioners and healthcare professionals from a range of disciplines, all of whom were experienced in care and planning of services of people with LTnC. The instrument progressed through an iterative process of testing and refinement before publication in by the NHS Information Centre in 2010. In its original form, both parts were designed for completion by clinicians. A patient-report version of the NPCS-Gets was subsequently developed and tested for completion by patients and/or their carers.

The NPCS allows a characterisation of healthcare and social support services in terms of both the type and amount needed and delivered. It also includes a costing algorithm to estimate the cost of meeting unmet needs. It may be used at individual level during integrated care planning to monitor the changing needs of a given patient over time and the services that are provided to support them at different stages along the care pathway. It may also have application at population level to identify gaps in service provision and to estimate the likely costs of addressing those gaps.

We believe that this elucidation of met and unmet needs will make a useful contribution to future evaluations of the effectiveness of community-based services.

The NPCS tool:

The Needs and Provision Complexity Scale Tool

Needs and Provision Complexity Score Sheet

The NPCS self-complete version:

NPCS Patient questionnaire

NPCS Carer questionnaire

Overview of the Needs and Provision Complexity Scale

The NPCS is an ordinal scale with five main domains and fifteen subscales which are summarized in the table below. It has a total range of 0-50.

DomainsRangeItemsCodeScore Range

Healthcare

0-6

Medical care needs

M

0-3

0-3

 

 

Skilled nursing needs

N

0-3

0-3

Personal care

0-10

Number of carers

CN

0-2

0-2

 

 

Care frequency

CF

0-5

0-5

 

 

Personal assistant / enabler

PA

0-3

0-3

Rehabilitation

0-9

Therapy disciplines

TD

0-3

0-3

 

 

Therapy Intensity

TI

0-3

0-3

 

 

Vocational support/rehabilitation

VR

0-3

0-3

Social and family

0-13

Social work case management

S

0-3

0-3

Support

 

Family carer support

FC

0-3

0-3

 

 

Respite - residential

RR

0-3

0-3

 

 

Respite - day care

RD

0-2

0-2

 

 

Advocacy

AD

0-2

0-2

Environment

0-12

Equipment

E

0-3

0-3

 

 

Accommodation

AC

0-9

0-9

Total

0-50

 

 

 

 

The NPCS is divided into two parts:

  • Part A: NPCS-Needs – defines the needs for input under the different headings

    • (The NPCS records both professional and personal perspectives on what the patient needs (professional view) and what they would like (personal choice).
  • Part B: NPCS-Gets (or ‘Provision’) – defines the current level of input or service currently provided within the same structure.

    • Unmet needs – are therefore recorded as the difference between the two scales.

Broadly, the rating levels under each item are designed to determine:

  1. the number of staff required and

  2. the frequency of needs/intervention

Level descriptors give a rough guide as to what might be “occasional”, “regular” or “frequent”, but these are not designed to be strictly defined cut-off points.

The summary score sheet includes a check list of the specific services required under each heading. It also includes a set of boxes to record the reasons for variance (unmet need) which may be:

  1. Service not available – ie there is no service available, or it has not been offered

  2. Service declined – ie service has been offered, but declined by the pt / carer (this will often be because they consider that which has been offered to be unsuitable) – there is space to record the specific circumstances if desired.

  3. Other - some other reason

‘Needs wants and gets’

There is also the option to score ‘what the patient wants’. This is particularly relevant in two scenarios:

  1. Where professionals consider that the patient requires a certain service, but the patient does not accept it.

    A typical example would be where the professionals believe that an individual requires care for the purpose of safety monitoring but the individual refuses this, either because they lack insight into their difficulties, or because they wish to maintain their independence and autonomy.

  2. Where professionals consider that the patient does not require a certain service, because there is no clinical potential to benefit it, but the patient and or family wants that service because they feel that it may help.

    A typical example would be the situation where an individual has permanent physical disability which does not have the potential to change with physiotherapy, but a maintenance programme is prescribed. However, the individual and/or their family cling strongly to the believe that, with enough therapy, they will regain the lost ability.

In both situations, the patient / family has a valid view-point which should be recorded but, for various reasons, the services they want cannot be given.

Validation of the NPCS

Preliminary evaluation of the NPCS has been undertaken and findings were presented at the World Congress in Neuro-rehabilitation, Melbourne, May 2012.

A first evaluation in a cohort of 423 patients discharges from specialist in-patient rehabilitation services across the London region demonstrated that the NPCS was easily understood and completed by both clinicians and patients.

  • Needs were rated by the treating cinicians on discharge.

  • Patients and/or their family carers recorded the levels of services provision in relation to those needs by self report postal questionnaire (with follow-up telephone interview where necessary)

Exploratory factor analysis indicated two primary factors, reflecting needs for ‘Health and Personal Care’ and ‘Social and Family Support’.

  • Full scale reliability was excellent with Cronbach’s α=0.94.

  • Test-retest reliability for self-report was encouraging with ICCs for the six subscales ranging from 0.61-0.85.

  • Item-by item agreement, rated by quadratic-weighted Cohen’s kappa coefficient ranged from 0.47-0.93

Test-retest reliability of the newer patient-reported NPCS-Gets was examined in a subgroup of n=60 participants, who completed a second NPCS-Gets form a week after returning the first.

  • Test-retest reliability for self-report was encouraging with ICCs for the six subscales ranging from 0.66-0.84

  • Item-by item agreement, tested by Cohen’s kappa coefficients ranged from 0.47-0.93 (quadratic weighing) or 0.42-0.83 (linear weighting)

(WCNR Poster 49 – Factor Structure (PDF, 1.13mb))

Application of the NPCS in the same series of patients demonstrated significant gaps between needs and service provision, especially with respect to on-going community rehabilitation, equipment and social support.

  • By contrast, needs for medical, nursing and personal care were relatively well met.

  • Provision of support for personal care above the level of predicted need suggested deterioration of independence for some patients after discharge, possibly as a result of the failure to meet needs for rehabilitation and social support.

(WCNR Poster 48 – Unmet Needs(PDF, 1.05mb))

Concurrent validity was demonstrated through the expected relationships with other measures of dependency and community integration, including the Barthel Index, the Northwick Park Dependency Scale and the Community Integration Questionnaire.

Formal psychometric evaluation, including assessment of inter-rater reliability, has been submitted for publication Dec 2012.

Creating a Costing Algorithm within the NPCS

The Needs and Provision Complexity Scale (NPCS) provides an ordinal scale for estimating met and unmet need. A costing algorithm has been developed to express the impact of met and unmet needs directly in terms of cost.

  • In the absence of an accepted gold standard for activity and costing this this area, intuitive assumptions for annualised activity within each scoring level were drawn up on the basis of clinical experience, and tested through discussion with a peer group of clinicians experienced in the planning and provision of community services.

  • Costs were computed with reference to Curtis 20111 adjusted where necessary to reflect the costs of specialist care(with helpful further personal communication from Lesley Curtis).

  • In a sample of 211 patients, a version of the Client Services Receipt Inventory (CSRI)2 adapted for neurological disability3 was in parallel used to collate information on the number and duration of contacts for each type of service4.

  • As the content of the tools differs and as service provision varies widely, the CSRI could not be used directly to derive the costings, but CSRI data were analysed within each of the NPCS items to ‘sense-check’ the activity and costing assumptions.

  • Significant associations were expected, and indeed found, between the CSRI- and NPCS-estimated total costs (Spearman rho 0.57, p<0.0001) and across all domains.

Spearman correlations between annualized costs of services received as estimated by the NPCS-gets and CSRI six months after discharge from specialist rehabilitation.

 

The NPCS tool:

  • The Needs and Provision Complexity Scale Tool
  • Copy of Needs and Provision Complexity Score Sheet

The NPCS self-complete version:

  • NPCS Patient questionnaire
  • NPCS Carer questionnaire

 

Domain of service provision*Spearman rhoSignificance

Medical care

0.36

<0.001

Nursing care

0.27

<0.001

Personal care

0.34

<0.001

Therapy

0.42

<0.001

Social worker support

0.46

<0.001

Daycare

0.54

<0.001

Respite care  (residential)

0.25

<0.001

Total care costs

0.57

<0.001

*No direct comparison exists between the two scales for equipment of accommodation

Downloads

References

  1. Curtis L. Unit Costs of Health and Social Care 2011. Canterbury: Personal Social Services Research Unit, University of Kent 2011

  2. Beecham J, M. K. Costing psychiatric interventions Measuring Mental Health Needs London The Royal College of Psychiatrists, 2001

  3. Jackson DM, Turner-Stokes L, Harris J, McCrone PM, Easton A, Leigh PN. Support for carers - particularly those with multicple caring roles: an investigation into support needs and the costs of provision:Final Report to the Department of Health. (Grant ref 053/0007). London: King's College London, 2011

  4. Siegert RJ, Turner-Stokes L, McCrone PM, Jackson DM, Bassett P, Playford ED, et al. Evaluation of Community Rehabilitation Service Delivery in Long-Term Neurological Conditions: Final report. London: National Institute of Heath Research, Health Services and Delivery Research Programme (Grant No: 0001833), 2012

NPCS References

  • Siegert RJ, Turner-Stokes L, McCrone PM, Jackson DM, Bassett P, Playford ED, et al. Evaluation of Community Rehabilitation Service Delivery in Long-Term Neurological Conditions: Final report. London: National Institute of Heath Research, Health Services and Delivery Research Programme (Grant No: 0001833), 2012

  • Turner-Stokes L, Siegert RJ. The Needs and Provision Complexity Scale: factor structure and repeatability.Poster Presentation. 7th World Congress in Neurorehabilitation; 2012; Melbourne. Abstact published in Neurorehabilitation and Neural Repair 2012; 26(6): 695-804 (Poster 48)

  • Turner-Stokes L, Siegert RJ. The Needs and Provision Complexity Scale: measuring met and unmet needs in the community for patients with complex neurological disabilities. Poster Presentation. 7th World Congress in Neurorehabilitation; Melbourne. May 2012. Neurorehabilitation and Neural Repair 2012; 26(6): 695-804 (Poster 49)

  • Turner-Stokes L, Siegert RJ. The Needs and Provision Complexity Scale: a first psychometric analysis. Disability and Rehabilitation 2013

  • Turner-Stokes L, McCrone PM, Jackson DJ, Siegert RJ. The Needs and Provision Complexity Scale: a multi-centre prospective cohort analysis of met and unmet needs and their cost implications for patients with complex neurological disability. BMJ Open 2013

 

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