Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study.

BACKGROUND: Patient-reported experience measures (PREMs) are questionnaires that ask patients about their experience of healthcare to inform service improvements. It is unclear how palliative care patients manage the cognitive demands of completing PREMs, or how this can best be supported. This study aimed to explore cognitive operations among people with palliative care needs when completing a PREM focused on the care domains known to be important to this patient population in order to inform future administration of questionnaires for this purpose. METHODS: A qualitative approach was taken, using cognitive interviews. Participants were people receiving specialist palliative care with stable disease who were not bedbound. Interviews used 'think aloud' and verbal probes to explore the cognitive operations of comprehension, recall, judgement and response to a 33-item PREM, drafted using a standard process employed by the New South Wales Bureau of Health Information. Analysis proceeded first within- and then cross-cases to explore patterns. RESULTS: Fifteen people participated, all of whom had cancer except one with motor neuron disease. Six discussed inpatient care, and nine community care. Participants encountered challenges with all four cognitive operations. Many participants were unfamiliar with end-of-life care concepts like declining treatment and advance care planning. Participants often struggled to remember, answered hypothetically, or digressed beyond the focal setting. Few participants used the mid-point on a 3-point scale. However, all participants could complete two open-ended items on care aspects they regarded as 'best' or 'most needs improving'. CONCLUSIONS: Palliative care patients find PREMs challenging to complete and require supports to improve the quality and interpretability of data. Pending further research, tentative suggestions are made for PREM design and administration for this patient population.

A review and recommendations for optimal outcome measures of anxiety, depression and general distress in studies evaluating psychosocial interventions for English-speaking adults with heterogeneous cancer diagnoses.

OBJECTIVE: The objective of this paper is to inform choice of optimal patient-reported outcome measures (PROMs) of anxiety, depression and general distress for studies evaluating psychosocial interventions for English-speaking adults with heterogenous cancer diagnoses. METHODS: A systematic review was conducted to identify all PROMs used to assess anxiety, depression and general distress in randomised controlled trials (RCTs) of psychosocial interventions for people with cancer published between 1999 and May 2009. Candidate PROMs were evaluated for content, evidence of reliability and validity, clinical meaningfulness, comparison data, efficiency, ease of administration, cognitive burden and track record in identifying treatment effects in RCTs of psychosocial interventions. Property ratings were weighted and summed to give an overall score out of 100. RESULTS: The Hospital Anxiety and Depression Scale (HADS) scored highest overall (weighted score = 77.5), followed by the unofficial short-form of the Profile of Mood States (POMS), the POMS-37 (weighted score = 60), and the Centre for Epidemiological Studies Depression Scale (CES-D) and original POMS (weighted score = 55 each). CONCLUSIONS: The HADS' efficiency and substantial track record recommend its use where anxiety, mixed affective disorders or general distress are outcomes of interest. However, continuing controversy concerning the HADS depression scale cautions against dependence where depressive disorders are of primary interest. Where cost is a concern, the POMS-37 is recommended to measure anxiety or mixed affective disorders but does not offer a suitable index of general distress and, like the HADS, emphasises anhedonia in measuring depression. Where depression is the sole focus, the CES-D is recommended.