The PACIC (Glasgow et al. 2005) is a well-established tool for measuring patient experience of chronic illness care and is applicable to many settings. It was developed in the US and based on the influential Chronic Care Model (CCM). It provides good coverage of the P3C domains. It is a 20-item measure that enables patients with chronic conditions to report on the care they have recieved within the past 6 months.
PCCC or QoL?
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.
Patient activation, delivery system design and decision support, goal setting and tailoring, problem-solving and contextual counselling, follow-up care and coordination
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.
No permission needed for personal or non-commercia
The measures can be either generic or disease specific (e.g. Diabetes, Heart Failure)
Long term chronic onditions
Main context tested in
The main context in which the measure has been developed and used (E.g. Hopital, General Practice etc).
Primary Care, Hospitals
Main countries used in
The main countries in which the measure has been developed and used.
US, UK and The Netherlands
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.
It was designed to assess patient perspectives of the implementation of the Chronic Care Model (CCM). It focuses on the receipt of patient-centred care and self-management behaviours. It asks patient to evaluate their care within the past 6 months.
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
20 Items, 26 items (PACIC+) and translated versions. It has also been applied to diabetic patient populations.
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.
Time to complete
Information exchange, decision making, communication, self-management, goal setting, care plan, empowerment more?
Care coordination within teams
Generic care planning
Continuity of care
Shared decision making
Behaviour and communication skills
Knowledge of patient
A brief description of the initially reported psychometric properties of the measure.
An evaluation of the psychometric qualities of the PACIC in a large sample of UK patients with long-term conditions (Rick et al. 2012) reported that the PACIC scale had demonstrated potential utility for improving care for long-term conditions, but further assessment was necessary in order to ascertain why there were low levels of completion and to explore how effective the scale was at predicting outcomes and assessing the effects of interventions.
Face, construct, and concurrent validity, as well as measurement performance were demonstrated, characterising the PACIC as a reliable instrument. Test-re-test reliability was moderately stable over a three month interval. Most items strongly related to their retrospective subscale(s) and the overall model had moderate goodness of fit.
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.