Measuring medicine-related experiences from the patient perspective: a systematic review

BACKGROUND: There is an increasing drive to measure and so improve patients’ experiences and outcomes of health care. This also applies to medicines, given their ubiquity as health care interventions. Patients’ experiences of using medicines vary, and instruments which measure these are seen as an essential component to improve care. We aimed to identify generic measures of patients’ experiences of using prescription medicines and to examine their properties and suitability for use in research or practice. METHODS: Multiple electronic databases were searched: MEDLINE, Embase, PsycINFO, PsycARTICLES, CINHAL Plus, PROQOLID(®), and Google Scholar. We identified, critically appraised, and summarized generic questionnaires assessing one or more aspects of the medicine use experience among adult patients using prescription medicines for chronic conditions, and the process of questionnaire development, degree of patient involvement, and/or validation processes. RESULTS: Fifteen questionnaires were included. Of these, nine measures were multidimensional, covering various aspects of medicine use. Six instruments covered only a single domain, assessing a specific facet of using medicines. Domains covered were the following: effectiveness; convenience, practicalities, and/or managing medicines; information, knowledge, and/or understanding; side effects; relationships and/or communication with health professionals; impact on daily living and/or social life; general satisfaction; attitudes; beliefs, concerns, and/or perceptions; medical follow-up and/or adherence-related issues; treatment- and/or medicine-related burden, perceived control, or autonomy; self-confidence about medicine use; availability and accessibility; and medicine-related quality of life. None of the identified questionnaires covered all domains. Instruments varied in the extent of patient involvement in both their development and validation. CONCLUSION: There is a scarcity of psychometrically sound, comprehensive, and generic measures of experiences of using prescription medicines among adult patients living with chronic illnesses. There is a need for further development and/or validation of existing instruments suitable for use in this population.