A survey administered to a proxy individual to measure quality of care at the end of life from the perspective of family members. It is based on a patient-focused, family-centred approach that examines whether end-of-life care meets the expectations and needs of the dying person and their family members. The instrument investigates a comprehensive coverage of domains, including whether physical comfort and emotional support are provided to the dying patient, whether shared decision making is promoted, if care is focused on the individual, whether the needs of family members are met and if satisfactory coordination of care is achieved. This was the most cited of measures in a recent systematic review for measuring EoL experience - http://www.ncbi.nlm.nih.gov/pubmed/25543110. It covers a broad variety of domains and has been used in the widest contexts, including nursing homes, hospitals, cancer centres and outpatient services for diseases including cancer and dementia.
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
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”.