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

Abstract

BackgroundThere 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.MethodsMultiple 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.ResultsFifteen 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.ConclusionThere 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.

Validation of an instrument to measure patients’ experiences of medicine use: the Living with Medicines Questionnaire

“…The original LMQ was shown to cover more domains than most other instruments purporting to describe patient experiences of medicine use 19. The instrument covers eight interrelated, yet distinct, dimensions of the medicine use experience: perceptions about effectiveness, concerns about medicine use, patient–provider relationships and communication about medicines, practical difficulties, interferences with daily life, autonomy/control over medicine and acceptance of medicine use, which have been cited by users of long-term medicines as burdensome 18.…”

“…The long-term use of medicines is, however, multidimensional and complex; any individual can experience both positive and negative aspects of medicine use 16–18. No existing instrument covers all issues that patients describe in their varied experiences of using medicines 19. A recently developed generic measure of treatment burden, defined as “the impact of health care on patients’ functioning and well-being”, exists,20 which includes, but is not specific to, the burden of prescription medicine use.…”

“…The instrument was based on the findings from interviews with 21 patients of different ages who were taking a diverse range of long-term multiple medicines,23 and covered the range of issues outlined above. Both initial item generation and content validation involved patients, unlike many instruments purporting to represent patient views 19. Preliminary testing of the LMQ involved patients taking long-term medicines recruited from an English primary care setting 22.…”

Medication-related burden among patients with chronic disease conditions: perspectives of patients attending non-communicable disease clinics in a primary healthcare setting in Qatar

“…Medications are commonly used for the long-term management of chronic diseases [8]. The benefits of medications in preventing or slowing the progression of the adverse consequences of NCDs including premature deaths, as well as managing associated symptoms, are indisputable [8].…”

Deprescribing: tackling increasing polypharmacy

“…20 Instruments that measure the burden of polypharmacy from the patient's perspective could not only help to ensure that this is indeed placed at the centre of any intervention or consultation, but may also provide an alternative means of identifying patients who may benefit from intervention. 21,22 One new instrument that may prove useful in future is the Living with Medicines Questionnaire.…”