Comfort Assessment in Dying with Dementia
The number of questions in the survey
Satisfaction with Care at the End-of-Life in Dementia (EOLD-SWC) & Comfort Assessment in Dying with Dementia (EOLD-CAD) are a pair of tools for EoL care in dementia. EOLD-CAD has four subscales: Physical Distress, Dying Symptoms, Emotional Distress, and Well Being. Both scales have been deemed as being the most valid and internally consistent for end-of-life in dementia in systematic review - http://www.ncbi.nlm.nih.gov/pubmed/21814875. Furthermore, this set of scales was recently signposted in a UK a publication of implementation of UK national policies - http://www.ncbi.nlm.nih.gov/pubmed/?term=26481400
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.
End of life, palliative care, physical distress, dying symptoms, emotional distress, and well being
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)