Olga C. Damman, Laxsini Murugesu, Vincent de Groot, Brigit A. de Jong
{"title":"‘So Let's Go On Like This?’—Shared Decision-Making and the Use of Outcome Information in Routine Care Management for People With Multiple Sclerosis","authors":"Olga C. Damman, Laxsini Murugesu, Vincent de Groot, Brigit A. de Jong","doi":"10.1111/hex.70009","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>This qualitative study used the following: (a) observations of clinical encounters (<i>N</i> = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (<i>N</i> = 17) and (c) interviews with those HCPs (<i>N</i> = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patients after signalling and discussing ‘problems’. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients' preferences, especially related to patients' experiences and priorities.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices were not explicitly mentioned or discussed. However, discussions about patients' experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed.</p>\n </section>\n \n <section>\n \n <h3> Patient or Public Contribution</h3>\n \n <p>People with MS contributed as research participants and provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS.</p>\n </section>\n </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0000,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11500206/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health Expectations","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/hex.70009","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Introduction
This study aimed to investigate how shared decision-making (SDM) and the use of different types of outcome information are applied in routine care management for people with multiple sclerosis (MS) in an academic outpatient clinic.
Methods
This qualitative study used the following: (a) observations of clinical encounters (N = 23) between patients and healthcare professionals (HCPs), (b) interviews with those patients (N = 17) and (c) interviews with those HCPs (N = 7). HCPs were not trained in SDM before the study. Audio recordings were transcribed literally. Transcriptions were analysed using qualitative thematic analysis.
Results
Outcome information was hardly discussed with patients, apart from clinical outcome information at an individual level, such as MRI or lab results. This use of clinical outcome information did not automatically lead to a process of SDM. HCPs tended to implicitly present choices to patients after signalling and discussing ‘problems’. In the interviews, patients indicated that they tended to consent to the advice given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We observed multiple discussions about patients' preferences, especially related to patients' experiences and priorities.
Conclusions
Overall, SDM and the use of different types of outcome information did not seem to be enacted in routine care management for people with MS, mostly because choices were not explicitly mentioned or discussed. However, discussions about patients' experiences and priorities did take place. Training HCPs further and developing patient information seem reasonable steps to proceed.
Patient or Public Contribution
People with MS contributed as research participants and provided us with their experiences in interviews. Furthermore, representatives of two patient organizations contributed to the study by reviewing the interview protocol for people with MS.
期刊介绍:
Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including:
• Person-centred care and quality improvement
• Patients'' participation in decisions about disease prevention and management
• Public perceptions of health services
• Citizen involvement in health care policy making and priority-setting
• Methods for monitoring and evaluating participation
• Empowerment and consumerism
• Patients'' role in safety and quality
• Patient and public role in health services research
• Co-production (researchers working with patients and the public) of research, health care and policy
Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.