What aspects of quality of life are important from palliative care patients’ perspectives?

Context Despite the availability of numerous tools professing to measure quality of life (QOL) in the palliative care setting, no single instrument includes all patient-valued domains. Objectives To identify which aspects of QOL are important from palliative care patients’ perspectives, aiding coverage, and content validity evaluation of available tools. Methods A systematic review and synthesis of qualitative research was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. ASSIA, CINAHL, Cochrane library, Embase, Medline, PsycINFO, and PubMed were searched from database inception to December 31, 2015. Published, peer-reviewed, English-language articles reporting primary qualitative data investigating QOL domains in adults with a progressive, life-limiting illness were included. Studies a priori exploring a chosen aspect of QOL were not included. Articles scoring ≤2 on reporting quality were excluded. Framework synthesis was used to identify key themes across the studies. Results Overall, 3589 articles were screened and 24 studies were included. Eight important aspects of QOL were identified: physical; personal autonomy; emotional; social; spiritual; cognitive; healthcare; and preparatory. All but one study discussed spiritual aspects, whereas only six studies mentioned cognitive aspects. Conclusion A broad range of domains are important to the QOL of people with life-limiting illnesses receiving palliation. Refinement of measures is needed to help ensure services address issues valued by patients such as preparation for death and aspects of health care provision, elements which are seldom included in currently available preference-based measures used to inform value for money decisions in palliative care.