Patients’ experiences and perspectives of patient-reported outcome measures in clinical care: A systematic review and qualitative meta-synthesis

Abstract

Background Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients’ perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients’ lives, they can help to bridge the gap between clinicians’ expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients’ perspectives and experiences of the use of PROMs in clinical care. Methods A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP). A meta-ethnographic approach was used for data extraction and meta-synthesis of findings (PROSPERO registration: CRD42020202506). Results Fourteen studies from a range of countries with differing qualitative research methodologies were identified. Three themes were identified, namely ‘patient preferences regarding PROMs’, ‘patient perceived benefits’ and ‘barriers to patient engagement with PROMs’. The perspectives of patients suggested they preferred PROMs that were simple and relevant to their conditions and found benefits in the way they facilitated self-reflection and effective communication with their clinicians. Patients, however, questioned the relevance of some individual questions and purpose. Conclusion PROMs can be a useful tool in the clinical setting by enabling individualisation and patient centred care. This meta-synthesis provides insights into what patients find beneficial as well as barriers to their engagement, highlighting the importance of educating patients about PROMs.

Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

“…In alignment with several prior studies [15,24,39,40], we found that PROs improved patientclinician communication. When the physician incorporated the patients' responses in the dialogue, their understanding of the disease seemed to increase, making it easier for them to handle the burden of kidney disease in everyday life.…”

“…Implementing PROs in a clinical setting encompasses a complex intervention involving the interactions and interpretations of several individuals. Several studies have shown the importance of understanding the potential barriers and facilitators when integrating PROs into a health system [23,24]. Understanding patients' experiences is essential, particularly when interventions require their active participation [25].…”

Patients' experiences of completing patient‐reported outcomes in clinical trials: An interview study

“…PRO is defined as ‘any report on the status of a patient's health that comes directly from the patient, without a clinician or others interpreting the patient's responses’ 5,6 . Thus, PRO provides an opportunity to systematically collect the patients' subjective perspectives on quality of life—including physical, social and emotional functioning 1,2 . PRO data are therefore needed to capture the patients' perspectives of the impact of disease and treatment and, thus, complement clinical and diagnostic data 1,7,8 …”

Discussing results of patient-reported outcome measures (PROMs) between patients and healthcare professionals in routine dialysis care: a qualitative study

“…Integration of PROMs into routine care has the potential to contribute to a more person-centred approach, incorporating patients’ experiences and needs complementary to traditional clinical measures. This provides patients and healthcare professionals with a more complete perspective on how the patient is really doing and could enhance shared decision-making about treatment choices 2 13–18…”