This compendium contains patient-reported measures that are either designed to specifically measure aspects of Person Centred Co-Ordinated Care (P3C), or alternatively tools that are designed to measure some aspect of Quality of Life (QoL) or Health Related Quality of Life (hrQoL). All the measures in this compendium have been broadly categorised into one of those two concepts.
Person Centred Coordinated Care
Main Domains Measured
This is the key domains that the measure is targeting.
Shared decision making, decisional conflict
Type of measure
The measures in this compendium can take a variety of forms. Generally, they will be either Patient Reported Outcome Measure (PROM) or Patient Reported Experience Measure (PREM). However, we have also included a few measures that are completed by proxy-individual (PROXY), which are useful in instances where the respondent cannot answer directly (e.g. dementia or end of life). Sometimes, these measures can even be a composite of these types, and target both experiences and outcomes – we have labelled these measures “PROEMs”.
The person that fills in the questionnaire - e.g. patient, Health Care Professional, or proxy (normally a carer or family member)
Whether the measure is free to use without major restrictions, or instead permission and/or licensing fees are required. E.g. if "Yes", you should seek authorisation/permission prior to using the instrument.
The measures can be either generic or disease specific (e.g. Diabetes, Heart Failure)
Main context tested in
The main context in which the measure has been developed and used (E.g. Hopital, General Practice etc).
Various - including Primary care, hospital, community
Main countries used in
The main countries in which the measure has been developed and used.
US, Canada, Japan, China
e.g. Adults, Children, Elderly
Main uses of measure
The context in which the measure is most often used – e.g. clinical trials; national surveys.
Decision aid evaluations
Used in UK?
Whether the instrument has been tested and validated within a UK healthcare context.
A crude indication of the impact of the measure on academia. This is the number of times the original publication has been cited on PubMed, divided/normalised to the years since publication.
Other versions available
Original 16 statements, 5 response categories, Low Literacy DCS: 10 questions, 3 response categories, SURE Test for clinical practice: 4 items, 2 response categories. Different versions have various number of different translated versions available.
Flesch-Kincaid readability tests
A rating that corresponds approximately to US school grade level. For example, a score of 8.0 means that an eighth grader can understand the document. Generally, a score of 7 or 8 should be appropriate.
Decision making (depends on context of use)
Shared decision making
Behaviour and communication skills
A brief description of the initially reported psychometric properties of the measure.
The scale was evaluated with 909 individuals deciding about influenza immunization or breast cancer screening. A subsample of respondents was retested two weeks later. The test-retest reliability coefficient was 0.81. Internal consistency coefficients ranged from 0.78 to 0.92. The DCS discriminated significantly (p < 0.0002) between those who had strong intentions either to accept or to decline invitations to receive influenza vaccine or breast cancer screening and those whose intentions were uncertain. The scale also discriminated significantly (p < 0.0002) between those who accepted or rejected immunization and those who delayed their decisions to be immunized. There was a weak inverse correlation (r = - 0.16, p < 0.05) between the DCS and knowledge test scores. The psychometric properties of the scale are acceptable. It is feasible and easy to administer. Evaluations of responsiveness to change and validation with more difficult decisions are warranted.
Co-developed with patients
Whether the measure was co-developed with patients, a critical stage in the design and implementation of truly person-centred measures.