Reza D. Mirza, Marcy B. Bolster, Sindhu R. Johnson, Aberdeen Allen Jr, Elana J. Bernstein, Jonathan H. Chung, Sonye K. Danoff, Catherine Falardeau, Gordon Guyatt, Ilya Ivlev, Dinesh Khanna, Kiana T. Nesbitt, Amy Turner, Stacey Uhl, Michael D. George
{"title":"评估患者的价值观和偏好，为 2023 年美国风湿病学会/美国胸科医师学会间质性肺病指南提供依据。","authors":"Reza D. Mirza, Marcy B. Bolster, Sindhu R. Johnson, Aberdeen Allen Jr, Elana J. Bernstein, Jonathan H. Chung, Sonye K. Danoff, Catherine Falardeau, Gordon Guyatt, Ilya Ivlev, Dinesh Khanna, Kiana T. Nesbitt, Amy Turner, Stacey Uhl, Michael D. George","doi":"10.1002/acr.25346","DOIUrl":null,"url":null,"abstract":"<div>\n \n <section>\n \n <h3> Objective</h3>\n \n <p>Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients’ values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs).</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33–73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients’ priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient-identified themes played a critical role in ILD guideline development and provide core elements for shared decision-making as clinicians make management and therapeutic decisions with patients with SARD-associated ILD.</p>\n \n <div>\n <figure>\n <div><picture>\n <source></source></picture><p></p>\n </div>\n </figure>\n </div>\n </section>\n </div>","PeriodicalId":8406,"journal":{"name":"Arthritis Care & Research","volume":null,"pages":null},"PeriodicalIF":3.7000,"publicationDate":"2024-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/acr.25346","citationCount":"0","resultStr":"{\"title\":\"Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines\",\"authors\":\"Reza D. Mirza, Marcy B. Bolster, Sindhu R. Johnson, Aberdeen Allen Jr, Elana J. Bernstein, Jonathan H. Chung, Sonye K. Danoff, Catherine Falardeau, Gordon Guyatt, Ilya Ivlev, Dinesh Khanna, Kiana T. Nesbitt, Amy Turner, Stacey Uhl, Michael D. George\",\"doi\":\"10.1002/acr.25346\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n <section>\\n \\n <h3> Objective</h3>\\n \\n <p>Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients’ values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs).</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33–73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients’ priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. 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Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines
Objective
Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients’ values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs).
Methods
We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema.
Results
Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33–73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients’ priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations.
Conclusion
Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient-identified themes played a critical role in ILD guideline development and provide core elements for shared decision-making as clinicians make management and therapeutic decisions with patients with SARD-associated ILD.
期刊介绍：
Arthritis Care & Research, an official journal of the American College of Rheumatology and the Association of Rheumatology Health Professionals (a division of the College), is a peer-reviewed publication that publishes original research, review articles, and editorials that promote excellence in the clinical practice of rheumatology. Relevant to the care of individuals with rheumatic diseases, major topics are evidence-based practice studies, clinical problems, practice guidelines, educational, social, and public health issues, health economics, health care policy, and future trends in rheumatology practice.
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