Dataset Information

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.

ABSTRACT: BACKGROUND:There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI). OBJECTIVES:The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products. METHODS:Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products. The interviews were used to draft and validate the interview guide for focus groups with patients with RA. Participants were purposively sampled in collaboration with the Swedish Rheumatism Association in Stockholm and Uppsala. Each focus group consisted of three to six patients (18 in total). All interviews were audio-recorded, transcribed verbatim, and analysed using content analysis. RESULTS:According to the participants, PPI could lead to regulators considering patients' needs, lifestyles and well-being when making decisions. PPI was important in all stages of the medical product lifecycle. Participants reported that, when participating in a preference study, it is important to be well-informed about the use of the study and the development, components, administration, and risks related to the medical products. CONCLUSIONS:Patients thought PPI could be valuable to consider in regulatory decisions. It is essential for patients to be well-informed when asked for their preferences. Research on information materials to inform patients in preference studies is needed to increase the value of PPI in regulatory decision making.

SUBMITTER: Bywall KS

PROVIDER: S-EPMC6525140 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.

Bywall Karin Schölin KS Veldwijk Jorien J Hansson Mats G MG Kihlbom Ulrik U

The patient 20190601 3

<h4>Background</h4>There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI).<h4>Objectives</h4>The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products.<h4>Methods</h4>Regulators and patients with RA were interviewed to ...[more]

PMID: 30443897

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Project description:BackgroundRheumatoid arthritis (RA) is characterized by recurrent fluctuations in symptoms such as joint pain, swelling, and stiffness. Remote measurement technologies (RMTs) offer the opportunity to track symptoms continuously and in real time; therefore, they may provide a more accurate picture of RA disease activity as a complement to prescheduled general practitioner appointments. Previous research has shown patient interest in remote symptom tracking in RA and has provided evidence for its clinical validity. However, there is a lack of co-design in the current development of systems, and the features of RMTs that best promote optimal engagement remain unclear.ObjectiveThis study represents the first in a series of work that aims to develop a multiparametric RMT system for symptom tracking in RA. The objective of this study is to determine the important outcomes for disease management in patients with RA and how these can be best captured via remote measurement.MethodsA total of 9 patients (aged 23-77 years; mean 55.78, SD 17.54) with RA were recruited from King's College Hospital to participate in two semistructured focus groups. Both focus group discussions were conducted by a facilitator and a lived-experience researcher. The sessions were recorded, transcribed, independently coded, and analyzed for themes.ResultsThematic analysis identified a total of four overarching themes: important symptoms and outcomes in RA, management of RA symptoms, views on the current health care system, and views on the use of RMTs in RA. Mobility and pain were key symptoms to consider for symptom tracking as well as symptom triggers. There is a general consensus that the ability to track fluctuations and transmit such data to clinicians would aid in individual symptom management and the effectiveness of clinical care. Suggestions for visually capturing symptom fluctuations in an app were proposed.ConclusionsThe findings support previous work on the acceptability of RMT with RA disease management and address key outcomes for integration into a remote monitoring system for RA self-management and clinical care. Clear recommendations for RMT design are proposed. Future work will aim to take these recommendations into a user testing phase.

Project description:IntroductionMost knowledge translation models pay relatively little attention to patient-held knowledge and are largely based on the premise that researchers and clinicians hold all valuable knowledge, and patients are passive recipients of such knowledge. Counter to this clinician- and researcher-centred lens is a growing interest and awareness of patients as experts in their health. While naturopathic medicine is described and experienced as a patient-centred system of traditional medicine, the position of patient-held knowledge is unclear particularly when considered alongside their use of other more objective forms of knowledge such as research evidence.MethodsThis international online cross-sectional survey aimed to explore naturopathic practitioners' perceptions of the value and contribution of patient-shared knowledge and information within the context of naturopathic clinical consultations.ResultsThe survey was completed by 453 naturopathic practitioners (response rate: 74.3%). Approximately two-thirds (68.2%) of respondents reported using information shared by the patient. Most rated 'information provided by the patient' as either 'extremely important' (60.7%) or 'very important' (31.4%) to patients. Highest levels of trust were reported for information provided by the patient ('completely': 9.9%; 'a lot': 53.6%). Most practitioners indicated they trusted knowledge and information derived from the patient's personal health history 'completely' (n = 79; 21.8%) or 'a lot' (n = 226; 62.4%) from the patient's perspective of living with a health condition ('completely' [n = 63, 17.4%]; 'a lot' [n = 224, 61.9%]). Patients were the highest ranked stakeholder group (mean: 1.5) perceived to influence NP use of patient experience of living with a health condition to inform clinical decision-making.ConclusionResearchers and policy makers are increasingly focused on the value of the 'expert patient' in clinical decision-making, yet health professionals' report challenges and, in some cases, resistance to meaningfully engaging with patient-shared knowledge in practice. However, our study has found patient-shared knowledge - inclusive of patient experience of their health condition - is among the knowledge used and trusted by naturopathic practitioners to inform their clinical decision-making. This study both offers insights into the knowledge translation behaviours of an under-researched health profession and provides a novel contribution to the wider aim of adopting patient-shared knowledge into clinical care more generally.

Dataset Information

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.

Publications

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis.

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