Using PROMs during routine medical consultations: The perspectives of people with Parkinson’s disease and their health professionals

Abstract

BackgroundThe use of patient‐reported outcomes measures (PROMs), such as quality of life or symptoms like pain or fatigue, is increasingly embraced within patient‐centred care and shared decision making.ObjectivesTo investigate: (a) how patients and health professionals think about using PROMs during routine medical consultations; (b) for which purpose(s), patients and health professionals want to use PROMs during those consultations; and (c) how patients interpret PROMs information presented in various formats. People with Parkinson's disease and their health professionals served as case example.MethodsWe performed semi‐structured interviews with patients (N = 13) and professionals (N = 7 neurologists; N = 7 physiotherapists). We also used a survey in which patients (N = 115) were shown six figures displaying different information types. Presentation formats of this information varied (line/bar graphs). Interpretation by patients, perceived usefulness of information, attitude towards using information during routine medical consultations and (hypothetical) decisions were assessed.FindingsPatients and professionals were generally positive about using PROMs during medical consultations. Professionals stressed the opportunity to monitor changes in individual PROMs over time. Patients were primarily positive about aggregated PROMs to make treatment decisions. This information was also most often interpreted correctly, especially when presented through a line graph (90.1% correct). Professionals thought patients should take the initiative in discussing PROMs, whereas patients thought professionals should do so.Conclusion/DiscussionWhen used in routine medical consultations, PROMs seem to have potential to support shared decision making and facilitate patient‐professional communication. However, training seems needed for both patients and professionals to facilitate actual discussion and proper interpretation.

The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

“…In line with this, aggregated PROMs information about outcomes of options in terms of quality of life seems to be scarcely used. This latter finding corresponds to a recent study, showing that professionals stressed the opportunity to monitor changes in individual PROMs over time but not so much aggregated PROMs to make treatment decisions.…”

“…Yet training of professionals in choice talk will probably not provide the magic bullet, given their limited time for the consultation . The use of decision aids as well as patient activation tools (eg, Ask 3 Questions Campaign) could further enable clinicians practicing choice talk and probably also boost the integration of aggregated PROMs scores . Although patients' health literacy was not explicitly addressed in the project descriptions, the difficulty of explaining PROMs information and activating patients in using information was mentioned.…”

“…With respect to innovations, a recommendation is to invest in technology that enables professionals' use of PROMs and decision aids, preferably linked to electronic health records and clinical guidelines . If equipoise of options does not pop‐up somewhere for professionals during the patient's journey, it is no wonder that patients are left with short descriptions of options, potentially biased towards clinicians' preferences.…”

“…Aggregated PROMs scores could be used to inform patients more completely about benefits and harms of options. All in all, for treatment choices being made, it is important to have insight not only into clinical outcomes derived from clinical registries (eg, survival rates) but also into quality of life as reported by patients . In theory, use of PROMs in the medical encounter could thus contribute to the delivery of value .…”

“…All in all, for treatment choices being made, it is important to have insight not only into clinical outcomes derived from clinical registries (eg, survival rates) but also into quality of life as reported by patients. 40 In theory, use of PROMs in the medical encounter could thus contribute to the delivery of value. 32,41 Figure 1 presents a conceptual model integrating these suggested elements.…”