Outcome measures

Focus on dementia

Outcome measures are the end results of improvement work, the measures that show you have met your aim. In this work the most important outcome is that of improved experience of the care and support the person with dementia and their carer(s) receive.

Note: Some of the longer-term measures below are dependent on having a flag to identify patients with a dementia diagnosis. Please see the Local Population section for more information on identifying patients with dementia and calculating prevalence and incidence.

People with dementia and carer experience

PDS and Care co-ordination is based on the needs and values of people with dementia, carers and communities. It is important that teams engage with people with dementia and their carers to understand their experience. This will allow teams to identify change ideas that will allow the design of person-centred services as well as ensuring any improvements are meaningful.

There are a number of ways of doing this. The Single Quality Question is a useful resource. It was specifically created to collect information on how helpful post-diagnostic support (PDS) has been to people with dementia and their carers. Although initially designed for PDS, this question can be, and has been, used successfully to evaluate other services.

Staff experience

Staff wellbeing, experience and job satisfaction are key components to the success of any improvement initiative. It is important that relevant staff are fully engaged with the improvement work and any difference it has made to them is understood and captured. Measures should therefore also include staff experience.

Example of measurement plan

The expandable sections below give examples of outcome and experience measures. The first five examples are short term measures and the last four are longer-term outcomes that may result from your improvement activities over time. They are proxy (indirect but strongly correlated) measures for care co-ordination.

Experience of care and support measures

Measure:

  • Feedback from people on the support they are receiving/have received.

Operational definition guidance:

  • Services have evaluation methods to understand the impact of improved care and support. 

How to interpret:

  • More people report positive experiences of the care and support they receive.

Data collection:

  • Single Quality Question (SQQ) and when to use it.
  • Case studies.
  • Focus groups.

Experience of co-ordinated care and support

Measure:

  • Feedback from people on the support they are receiving/have received.

Operational definition guidance:

  • Services have evaluation methods to understand the perception of people with dementia and carers on how well their support and care is/has been co-ordinated following improvement activities.

How to interpret:

  • People with dementia and their carers report experiencing joined up care and support.

Data collection:

  • specific question(s) on care co-ordination.
  • adapt the SQQ.
  • what would people say that illustrates this, for example single point of contact or series of questions that elicit this.
  • case studies.
  • focus groups.

Health inequalities

Measure:

  • Measurement to ensure equitable access and outcomes.

Operational definition guidance:

  • All improvement activities should consider impact on equality. EQIA and data collection should be undertaken.
  • Improvement work may target specific populations e.g. Learning Disabilities, PDS in care homes, Young Onset Dementia.

How to interpret:

  • Understanding who in the population is receiving diagnosis and support and if this is equitable (e.g. across the SIMD quintiles or related to specific populations) and observing where data is changing.

Data collection:

  • SQQ
  • PDS data

Experience of delivering co-ordinated care and support (staff outcome)

Measure:

  • Staff feedback.

Operational definition guidance:

  • Services have evaluation methods to understand staff experience.

How to interpret:

  • Team report staff wellbeing, experience and job satisfaction.
  • Teams report increased confidence working with people living with dementia and their carers.
  • Teams report improved integrated working across health and social care.

Data collection:

  • Existing data capture processes such as iMatter.
  • Staff questionnaires, focus groups or interviews.

Other ways of measuring care co-ordination

Measure:

  • MDT working, third sector involvement, single point of access.

Operational definition guidance:

  • Services have evaluation methods in place to understand care co-ordination approach.

How to interpret:

  • Case sampling.

Data collection:

  • Last 10 patients tool.

A&E attendances

Measure:

  • Rate of A&E Attendances

Operational definition guidance:

  • Numerator: count of A&E attendances by patients with dementia.
  • Denominator: total count of A&E attendances.
  • The rate per 100,000 of A&E attendances for patients with a dementia diagnosis, presented by month.
  • Dementia diagnosis defined as documented in electronic patient records.

How to interpret:

  • This measure will show the rate of A&E attendances for patients with a dementia diagnosis.
  • It is anticipated that effective care co-ordination would result in a reduction in A&E attendances.

Unplanned admissions

Measure:

  • Rate of unplanned acute inpatient admissions for patients with a dementia diagnosis.

Operational definition guidance:

  • Numerator: count of unplanned admission with dementia diagnosis.
  • Denominator: count of unplanned admissions or people with a dementia diagnosis.
  • The rate per 100,000 of unplanned acute inpatient admissions for patients with a dementia diagnosis, presented by month.
  • Dementia diagnosis defined as documented in electronic patient records.

How to interpret:

  • It is anticipated that effective care co-ordination would result in a reduction in unplanned admissions.

Unplanned admissions in last 3 months of life

Measure:

  • Rate of unplanned acute inpatient admissions in last 3 months of life for patients with a dementia diagnosis.

Operational definition guidance:

  • Numerator: count of unplanned admission with dementia diagnosis and in last 3 months of life.
  • Denominator: count of unplanned admission (within last 3 months?).
  • Number of people with a confirmed Dementia diagnosis admitted to in-patient facilities in last 3 months of life.
  • Comparison with admissions without Dementia diagnosis.
  • Is denominator all admissions in last 3 months of life?

How to interpret:

  • Effective care co-ordination should result in a reduction in unplanned admissions in the last 3 months of life.

Place of death

Operational definition guidance:

  • Numbers and percentages of the place of death of people with a confirmed dementia diagnosis.

How to interpret:

  • Effective care co-ordination may result in an increase in the number of people dying at home or in a homely setting.