Patients and Professionals Perspectives on Minimum Data for Pulmonary Rehabilitation: Insights from a Delphi Study

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Patients and Professionals Perspectives on Minimum Data for Pulmonary Rehabilitation: Insights from a Delphi Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Patients and Professionals Perspectives on Minimum Data for Pulmonary Rehabilitation: Insights from a Delphi Study André Gonçalves Pereira, Renata Gonçalves Mendes This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7564189/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 4 You are reading this latest preprint version Abstract Background Pulmonary rehabilitation (PR) requires standardized documentation to monitor outcomes and ensure international comparability. Minimum Data Sets (MDS) are central to this process, but alignment between patients’ and professionals’ priorities remains unclear. Methods We conducted a secondary analysis of a two-round Delphi study including 40 PR professionals and 7 patients with chronic respiratory diseases. Items were rated on a 9-point Likert scale; consensus was defined as ≥ 70%. Items were classified as mutual, patient-only, professional-only, or no consensus. Results Retention was 75% for professionals and 43% for patients. Mutual consensus was achieved for 12 items (71%), including lung function, functional capacity, and quality of life. Five items reached patient-only consensus, mostly psychosocial and socioeconomic aspects (emotional well-being, social support, and financial burden). No professional-only consensus emerged. Statistically significant differences were observed in sociodemographic data, risk factors, psychological status, and economic impact (p < 0.05). Conclusions Patients and professionals share core priorities for PR documentation but diverge on psychosocial and socioeconomic aspects. The absence of professional-only consensus highlights alignment on clinical outcomes, while divergences underscore the need for co-designed, patient-centered MDS frameworks. These findings should be considered preliminary due to limited patient participation and require validation in larger, multidisciplinary, and multicenter studies. Figures Figure 1 Figure 2 Introduction Pulmonary rehabilitation (PR) is a comprehensive, multidisciplinary intervention designed to improve the physical and psychological condition of people with chronic respiratory diseases and to promote long-term adherence to health-enhancing behaviors ( 1 , 2 ). It combines exercise training, education, and self-management strategies, leading to clinically significant improvements in dyspnea, exercise tolerance, and health-related quality of life ( 3 , 4 ). The systematic collection of patient data through a Minimum Data Set allows consistent monitoring of outcomes, supports clinical decision-making, and facilitates multicenter research comparability ( 5 , 6 ). However, the success of such frameworks depends on the alignment between what professionals deem essential to collect and what patients consider relevant to their lived experience( 7 , 8 ). Recent policy statements and guidelines, including the Global Initiative for Chronic Obstructive Lung Disease( 9 ) and Brazilian national protocols ( 10 ), highlight the need for standardized outcome measures to ensure quality and equity in PR delivery. Nonetheless, data collection in PR is often heterogeneous, limiting the ability to compare results and optimize interventions ( 10 ). Most MDS development efforts in PR have been driven primarily by professional consensus, with limited engagement of patients in the decision-making process( 11 , 12 ). This can lead to datasets that fail to capture aspects central to patients’ quality of life, such as emotional well-being, social participation, and financial burden ( 13 , 14 ). In practice, such misalignment may reduce adherence to PR, weaken the perceived value of the program, and hinder personalized care ( 7 , 15 ). Therefore, this study aimed to systematically compare patients’ and professionals’ perceptions regarding essential PR data items, identifying areas of convergence and divergence to inform the development of a patient-centered MDS. The guiding research question was: To what extent do patients and professionals converge or diverge in their prioritization of data items for pulmonary rehabilitation, and how can these perspectives be integrated into the design of a patient-centered Minimum Data Set ? Methods Study Design This observational study is a secondary analysis of data from a two-stage Delphi consensus process conducted to identify essential data items for PR registration in Brazil. The Delphi method was employed for its structured and iterative approach to consensus building among experts and stakeholders, preserving participant anonymity and reducing the influence of peer pressure (16, 17). As part of this observational analysis, agreement patterns were compared between two distinct groups of participants patients and healthcare professionals enabling a systematic assessment of convergences and divergences in item prioritization. Ethics approval and consent to participate This study was approved by the Institutional Ethics Committee (CAAE 78231024.4.0000.5504, protocol number 6.831.206). All participants provided informed consent electronically by reading the Free and Informed Consent Form and clicking “I agree to participate in this study.” Consent for publication Not applicable. Participants Participants were recruited through professional and patient networks, PR programs, and respiratory disease associations. · Healthcare professionals included physiotherapists, physicians, nurses, and other allied health professionals directly involved in PR delivery, with a minimum of one year of relevant clinical experience. · Patients were adults (≥18 years) diagnosed with chronic respiratory diseases (predominantly COPD), clinically stable, and with previous experience in PR. Recruitment was based on voluntary participation through invitations extended in PR programs and patient associations. Exclusion criteria included cognitive impairment, unstable clinical condition, or lack of prior participation in PR. Demographic and clinical characteristics were collected for both groups, including age, sex, education level, and, for patients, lung function and comorbidity data (18-20). Participant characteristics are summarized in Table 1. Delphi Procedures The Delphi process followed international methodological recommendations. · Round 1: Participants rated the importance of each proposed data item for PR registration using a 9-point Likert scale (1 = “not important” to 9 = “essential”). Items with ≥70% agreement (scores of 7–9) in at least one group were considered to have reached consensus for that group. Items below this threshold in both groups were carried forward to Round 2. · Round 2: Items without consensus in Round 1 were re-presented with anonymized group feedback from the previous round, allowing participants to reconsider their responses. The same ≥70% threshold was applied to determine consensus. Consensus Classification After both rounds, items were classified into four categories: · Mutual consensus: ≥70% agreement in both groups. · Patient-only consensus: ≥70% agreement among patients but not professionals. · Professional-only consensus: ≥70% agreement among professionals but not patients. · No consensus: <70% agreement in both groups. Statistical Analysis Data storage and processing were performed using REDCap®. Descriptive analyses included frequencies, raw agreement, means, and standard deviations. Consensus was operationally defined as ≥70% agreement in the 7–9 Likert range. Qualitative comments were systematically reviewed to guide decisions on item modification, retention, or exclusion in the final MDS proposal. Methodological Considerations Although the Delphi method is well suited for consensus-building, the relatively small number of patient participants (n= 7 in Round 1, reduced to n= 3 in Round 2) represents an important limitation. This small sample size may restrict the representativeness of patient perspectives and limit the generalizability of findings, reinforcing the need for further studies with larger and more diverse patient populations. Results A total of 40 healthcare professionals and 7 patients participated in at least one Delphi round, with a retention rate of 75% for professionals (30/40) and 42.8% for patients (3/7) between rounds. Among professionals, the majority were physiotherapists (n = 39, 97.5%), followed by other allied health professionals (n = 1, 2.5%). Patients had a mean age of 56.4 years in Round 1 and 59.6 years in Round 2, with the majority being female (85.7% in Round 1; 66.7% in Round 2). Most patients had a diagnosis of COPD (71.4% in Round 1; 100% in Round 2), followed by asthma (14.3% in Round 1) and other chronic respiratory diseases (28.6% in Round 1). Detailed demographic and clinical characteristics are presented in Table 1. Table 1. Characterization of study participants. Delphi Round 1 Delphi Round 2 Characteristic Professionals (N=40) Patients (N=7) Professionals (N=30) Patients (N=3) Age, years (mean) 37.7 56.4 35.7 59.6 Female sex, n (%) 29 (72.5%) 6 (85.7%) 25 (83.3%) 2 (66.7%) Professional training, n (%) 39 (97.5%) physiotherapists 1 (2.5%) other (nurse) — 30 (100%) physiotherapists — Chronic respiratory disease, n (%) — Asthma: 1 (14.3%) Bronchiectasis: 0 COPD: 5 (71.4%) Other: 1 (14.3%) — Asthma: 0 Bronchiectasis: 0 COPD: 3 (100%) Other: 0 Other professionals: nurse; 2) COPD: Chronic Obstructive Pulmonary Disease; 3) Other diseases: pulmonary lymphangioleiomyomatosis. In both Delphi rounds, all items reached consensus in at least one group. Of these, mutual consensus was achieved for 12 items (71% of the total), including lung function, functional capacity, and health-related quality of life. Patient-only consensus occurred for 5 items, predominantly related to emotional well-being, social support, and financial burden. Professional-only consensus did not occur for any items, indicating that all domains prioritized by professionals overlapped with those also valued by patients. No items remained without consensus. Figure 1 presents a Venn diagram illustrating the overlap and divergence in consensus items between patients and professionals. Round-by-Round Changes Between Round 1 and Round 2, 5 items gained consensus after feedback, while 0 items lost consensus. In patients, the largest shift was an increased agreement on sociodemographic data (which moved from below threshold in Round 1 to ≥70% in Round 2). Among professionals, notable changes occurred for economic impact and psychological status, which did not reach consensus in Round 1 but achieved the ≥70% threshold in Round 2. Consensus Patterns Between Professionals and Patients In the results presented in Figure 2, the heatmaps illustrate the level of consensus achieved between professionals and patients regarding the domains considered essential for pulmonary rehabilitation records across three points: admission, follow-up, and discharge. Among professionals, a high level of consensus (≥70%) was observed for nearly all domains from the time of admission, particularly comorbidities, dyspnea, exacerbations, functional capacity, quality of life, and risk factors. Some domains, such as psychological status, disease impact, and sociodemographic information, showed variation across the follow-up phases, suggesting that their perceived relevance may change as patients progress through the program. Patients also demonstrated strong consensus across most domains, especially dyspnea, quality of life, disease impact, physical limitations, and psychosocial support. Notably, domains such as economic impact, social support, and psychological status were prioritized more strongly by patients compared to professionals, highlighting the value attributed to subjective and contextual aspects of daily life and well-being. Overall, the analysis reveals convergence between patients and professionals regarding the importance of clinical and functional markers, while also identifying meaningful divergences, particularly in psychosocial dimensions. These findings underscore the need to integrate both perspectives into the development of a minimum data set for pulmonary rehabilitation, ensuring that clinical priorities and patient experiences are equally represented. Group Differences Statistically significant differences in agreement proportions between patients and professionals were observed for 4 items (p < 0.05). These differences were most pronounced in domains of sociodemographic data, risk factors, psychological status and economic impact. Discussion This study compared patients and healthcare professionals perspectives on essential data items for PR. While a substantial proportion of items achieved mutual consensus, particularly clinical and functional outcomes such as lung function, exercise capacity, and quality of life, important divergences emerged. Professionals prioritized physiological and performance-based indicators, whereas patients emphasized psychosocial and socioeconomic aspects, including emotional well-being, social support, and financial burden. Similar divergences have been reported in previous studies, where professionals tend to value biomedical outcomes and patients focus on lived experiences and daily functioning (7, 13, 14). The mutual consensus observed for clinical outcomes is consistent with international initiatives on PR core outcome sets (5, 11). However, the patient-only consensus highlights gaps in current MDS frameworks, which often underrepresent domains such as psychological status and socioeconomic burden (8, 21). Addressing these aspects may strengthen patient engagement, improve adherence, and enhance long-term maintenance of PR benefits (22, 23). The divergence between groups likely reflects their distinct perspectives: professionals’ focus on physiological measures aligns with training, clinical goals, and accountability for outcomes (10, 15), while patients evaluate PR success through its impact on autonomy, social participation, and emotional well-being (13, 14). This underscores the importance of co-designing MDS frameworks that integrate both perspectives (7). Two methodological issues should be emphasized. First, the low number of patients (n=7 in Round 1, n=3 in Round 2) limits the representativeness of findings. Future Delphi studies should adopt strategies to enhance patient recruitment and retention, such as partnerships with patient associations, hybrid online/in-person rounds, and tailored support for participants with digital or health limitations(6, 12). Second, the predominance of physiotherapists (97.5%) among professionals may have skewed prioritization toward functional outcomes, underrepresenting perspectives from other disciplines such as psychology, nutrition, and nursing. Broader multidisciplinary involvement is essential to capture the complexity of PR. Finally, while statistically significant differences were found in sociodemographic data, risk factors, psychological status, and economic impact, the small sample size may have reduced power and should be interpreted cautiously. In summary , this study provides preliminary evidence that patients and professionals converge on clinical outcomes but diverge on psychosocial and socioeconomic domains. To ensure that PR documentation is both clinically robust and patient-centered, future efforts must prioritize co-designed MDS development with larger, more heterogeneous, and multidisciplinary samples. Conclusion This study demonstrates that while patients and healthcare professionals share common priorities regarding core outcomes for PR documentation, significant differences remain. Professionals tend to emphasize clinical and technical measures, whereas patients place greater value on psychosocial and socioeconomic aspects. These findings reinforce the need for co-designed Minimum Data Sets that balance biomedical rigor with patient-reported priorities. However, the small number of patients and the predominance of physiotherapists represent major limitations. The results should therefore be considered preliminary evidence. Larger, multicenter, and more heterogeneous studies are required to confirm these findings and guide the development of internationally harmonized, patient-centered PR data collection systems. The integration of both perspectives is crucial to ensure that PR documentation worldwide is not only clinically robust but also patient-centered and equitable. Declarations Funding statement This work was supported by the Coordination for the Improvement of Higher Education Personnel – Brazil (CAPES) – Funding Code 001. No other financial support was received from funding agencies, the public sector, the private sector, or non-profit organizations. Conflict of interest statement The authors declare that they have no conflicts of interest related to this study. References Spruit MA, Singh SJ, Garvey C, ZuWallack R, Nici L, Rochester C, et al. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med. 2013;188(8):e13–64. Holland AE, Cox NS, Houchen-Wolloff L, Rochester CL, Garvey C, ZuWallack R, et al. Defining modern pulmonary rehabilitation. An official American Thoracic Society workshop report. Annals Am Thorac Soc. 2021;18(5):e12–29. Rabe KF, Watz H. Chronic obstructive pulmonary disease. Lancet. 2017;389(10082):1931–40. Rochester CL, Vogiatzis I, Holland AE, Lareau SC, Marciniuk DD, Puhan MA, et al. An official American Thoracic Society/European Respiratory Society policy statement: enhancing implementation, use, and delivery of pulmonary rehabilitation. Am J Respir Crit Care Med. 2015;192(11):1373–86. Orme MW, Free RC, Manise A, Jones AV, Akylbekov A, Barton A et al. Global RECHARGE: establishing a standard international data set for pulmonary rehabilitation in low-and middle-income countries. J global health. 2020;10(2). Needham DM, Sepulveda KA, Dinglas VD, Chessare CM, Friedman LA, Bingham CO III, et al. Core outcome measures for clinical research in acute respiratory failure survivors. An international modified Delphi consensus study. Am J Respir Crit Care Med. 2017;196(9):1122–30. Jiang Y, Guo J, Sun P, Chen Z, Liu F, Wang S, et al. Perceptions and experiences of older patients and healthcare professionals regarding shared decision-making in pulmonary rehabilitation: A qualitative study. Clin Rehabil. 2021;35(11):1627–39. Basara L, Gluncic TJ, Maletic O, Pelicaric D, Grle SP, Samarzija M, et al. Person-centered approach in pulmonary rehabilitation. Int J person centered Med. 2014;4(2):126–30. GOLD G. Global Strategy for Prevention, Diagnosis and Management of COPD: 2022 Report. 2023. Verburg AC, Zincken J, Kiers H, van Dulmen SA, van der Wees PJ. Experiences of physiotherapists regarding a standard set of measurement instruments to improve quality of care for patients with chronic obstructive pulmonary disease: a mixed methods study. J Patient-Reported Outcomes. 2022;6(1):79. Souto-Miranda S, Saraiva I, Spruit MA, Marques A. Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey. Thorax. 2023;78(12):1240–7. Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, et al. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:1–8. Padhye R, Sahasrabudhe SD, Orme MW, Pina I, Dhamdhere D, Borade S, et al. Perspectives of Patients With Chronic Respiratory Diseases and Medical Professionals on Pulmonary Rehabilitation in Pune, India: Qualitative Analysis. JMIR Formative Res. 2023;7(1):e45624. Souto-Miranda S, Marques A. Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set. Clin Rehabil. 2019;33(4):805–14. Arriero-Marín JM, Orozco‐Beltrán D, Carratalá‐Munuera C, López‐Pineda A, Gil‐Guillen VF, Soler‐Cataluña JJ, et al. A modified Delphi consensus study to identify improvement proposals for COPD management amongst clinicians and administrators in Spain. Int J Clin Pract. 2021;75(5):e13934. Okoli C, Pawlowski SD. The Delphi method as a research tool: an example, design considerations and applications. Inf Manag. 2004;42(1):15–29. Jünger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684–706. Cruz MM, Pereira M. Epidemiology of Chronic Obstructive Pulmonary Disease in Brazil: a systematic review and meta-analysis. Ciênc saúde coletiva. 2020;25:4547–57. De Groot V, Beckerman H, Lankhorst GJ, Bouter LM. How to measure comorbidity: a critical review of available methods. J Clin Epidemiol. 2003;56(3):221–9. Lin CMA, Ng N, Orman A, Clement ND, Deehan DJ. Reliability of patient-reported comorbidities: a systematic review and meta-analysis. Postgrad Med J. 2023;99(1169):127–38. Burton L-J, Tyson S, McGovern A. Staff perceptions of using outcome measures in stroke rehabilitation. Disabil Rehabil. 2013;35(10):828–34. Güell M-R, Cejudo P, Ortega F, Puy MC, Rodríguez-Trigo G, Pijoan JI, et al. Benefits of long-term pulmonary rehabilitation maintenance program in patients with severe chronic obstructive pulmonary disease. Three-year follow-up. Am J Respir Crit Care Med. 2017;195(5):622–9. Candemir I, ERGÜN P, Şahin ME. Maintenance of pulmonary rehabilitation benefits in patients with COPD: is a structured5-year follow-up program helpful? Turk J Med Sci. 2021;51(6):2915–23. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 12 Sep, 2025 Editor assigned by journal 11 Sep, 2025 Submission checks completed at journal 11 Sep, 2025 First submitted to journal 08 Sep, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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1","display":"","copyAsset":false,"role":"figure","size":32856,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eVenn diagram showing the distribution of consensus items between patients and professionals\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLegend: Venn diagram illustrating the overlap and divergence of consensus items between professionals and patients after two Delphi rounds. Blue circle: items prioritized by professionals; Green circle: items prioritized by patients; Overlapping area: items with mutual consensus (≥70% agreement in both groups).\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-7564189/v1/d438e7ae0aea123dafb0e528.png"},{"id":91962171,"identity":"5d6eb296-b2a8-4680-ba82-5a5af94bc04b","added_by":"auto","created_at":"2025-09-23 07:54:28","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":97376,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAgreement and Differences Between Professionals and Patients on Pulmonary Rehabilitation Data Items\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLegend: Heatmaps showing consensus levels (≥70%) among professionals and patients regarding essential domains for PR records at admission, follow-up, and discharge. Warmer colors indicate higher consensus; cooler colors indicate lower consensus. Patients prioritized psychosocial and socioeconomic aspects more strongly than professionals.\u003c/p\u003e","description":"","filename":"floatimage2.png","url":"https://assets-eu.researchsquare.com/files/rs-7564189/v1/3a5a2603dd06f00debea260a.png"},{"id":91963272,"identity":"5529a8f8-9c46-4ec1-803b-7c440fcb7b07","added_by":"auto","created_at":"2025-09-23 08:02:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":775362,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7564189/v1/d28580bc-cee1-4066-9ab8-a51f17a3e197.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patients and Professionals Perspectives on Minimum Data for Pulmonary Rehabilitation: Insights from a Delphi Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003ePulmonary rehabilitation (PR) is a comprehensive, multidisciplinary intervention designed to improve the physical and psychological condition of people with chronic respiratory diseases and to promote long-term adherence to health-enhancing behaviors (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). It combines exercise training, education, and self-management strategies, leading to clinically significant improvements in dyspnea, exercise tolerance, and health-related quality of life (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe systematic collection of patient data through a Minimum Data Set allows consistent monitoring of outcomes, supports clinical decision-making, and facilitates multicenter research comparability (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). However, the success of such frameworks depends on the alignment between what professionals deem essential to collect and what patients consider relevant to their lived experience(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eRecent policy statements and guidelines, including the Global Initiative for Chronic Obstructive Lung Disease(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) and Brazilian national protocols (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e), highlight the need for standardized outcome measures to ensure quality and equity in PR delivery. Nonetheless, data collection in PR is often heterogeneous, limiting the ability to compare results and optimize interventions (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eMost MDS development efforts in PR have been driven primarily by professional consensus, with limited engagement of patients in the decision-making process(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). This can lead to datasets that fail to capture aspects central to patients\u0026rsquo; quality of life, such as emotional well-being, social participation, and financial burden (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In practice, such misalignment may reduce adherence to PR, weaken the perceived value of the program, and hinder personalized care (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eTherefore, this study aimed to systematically compare patients\u0026rsquo; and professionals\u0026rsquo; perceptions regarding essential PR data items, identifying areas of convergence and divergence to inform the development of a patient-centered MDS. The guiding research question was: \u003cem\u003eTo what extent do patients and professionals converge or diverge in their prioritization of data items for pulmonary rehabilitation, and how can these perspectives be integrated into the design of a patient-centered Minimum Data Set\u003c/em\u003e\u003cb\u003e?\u003c/b\u003e\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eStudy Design\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis observational study is a secondary analysis of data from a two-stage Delphi consensus process conducted to identify essential data items for PR registration in Brazil. The Delphi method was employed for its structured and iterative approach to consensus building among experts and stakeholders, preserving participant anonymity and reducing the influence of peer pressure (16, 17). As part of this observational analysis, agreement patterns were compared between two distinct groups of participants patients and healthcare professionals enabling a systematic assessment of convergences and divergences in item prioritization.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Institutional Ethics Committee (CAAE 78231024.4.0000.5504, protocol number 6.831.206). All participants provided informed consent electronically by reading the Free and Informed Consent Form and clicking \u0026ldquo;I agree to participate in this study.\u0026rdquo;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003cbr\u003e\u0026nbsp;Not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were recruited through professional and patient networks, PR programs, and respiratory disease associations.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Healthcare professionals included physiotherapists, physicians, nurses, and other allied health professionals directly involved in PR delivery, with a minimum of one year of relevant clinical experience.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Patients were adults (\u0026ge;18 years) diagnosed with chronic respiratory diseases (predominantly COPD), clinically stable, and with previous experience in PR. Recruitment was based on voluntary participation through invitations extended in PR programs and patient associations. Exclusion criteria included cognitive impairment, unstable clinical condition, or lack of prior participation in PR.\u003c/p\u003e\n\u003cp\u003eDemographic and clinical characteristics were collected for both groups, including age, sex, education level, and, for patients, lung function and comorbidity data (18-20). Participant characteristics are summarized in Table 1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDelphi Procedures\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Delphi process followed international methodological recommendations.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Round 1: Participants rated the importance of each proposed data item for PR registration using a 9-point Likert scale (1 = \u0026ldquo;not important\u0026rdquo; to 9 = \u0026ldquo;essential\u0026rdquo;). Items with \u0026ge;70% agreement (scores of 7\u0026ndash;9) in at least one group were considered to have reached consensus for that group. Items below this threshold in both groups were carried forward to Round 2.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Round 2: Items without consensus in Round 1 were re-presented with anonymized group feedback from the previous round, allowing participants to reconsider their responses. The same \u0026ge;70% threshold was applied to determine consensus.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsensus Classification\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAfter both rounds, items were classified into four categories:\u003c/p\u003e\n\u003cp\u003e\u0026middot; Mutual consensus: \u0026ge;70% agreement in both groups.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Patient-only consensus: \u0026ge;70% agreement among patients but not professionals.\u003c/p\u003e\n\u003cp\u003e\u0026middot; Professional-only consensus: \u0026ge;70% agreement among professionals but not patients.\u003c/p\u003e\n\u003cp\u003e\u0026middot; No consensus: \u0026lt;70% agreement in both groups.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStatistical Analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eData storage and processing were performed using REDCap\u0026reg;. Descriptive analyses included frequencies, raw agreement, means, and standard deviations. Consensus was operationally defined as \u0026ge;70% agreement in the 7\u0026ndash;9 Likert range. Qualitative comments were systematically reviewed to guide decisions on item modification, retention, or exclusion in the final MDS proposal.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethodological Considerations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAlthough the Delphi method is well suited for consensus-building, the relatively small number of patient participants (n= 7 in Round 1, reduced to n= 3 in Round 2) represents an important limitation. This small sample size may restrict the representativeness of patient perspectives and limit the generalizability of findings, reinforcing the need for further studies with larger and more diverse patient populations.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 40 healthcare professionals and 7 patients participated in at least one Delphi round, with a retention rate of 75% for professionals (30/40) and 42.8% for patients (3/7) between rounds. Among professionals, the majority were physiotherapists (n = 39, 97.5%), followed by other allied health professionals (n = 1, 2.5%).\u003c/p\u003e\n\u003cp\u003ePatients had a mean age of 56.4 years in Round 1 and 59.6 years in Round 2, with the majority being female (85.7% in Round 1; 66.7% in Round 2). Most patients had a diagnosis of COPD (71.4% in Round 1; 100% in Round 2), followed by asthma (14.3% in Round 1) and other chronic respiratory diseases (28.6% in Round 1). Detailed demographic and clinical characteristics are presented in Table 1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1.\u0026nbsp;\u003c/strong\u003eCharacterization of study participants.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"3\" cellpadding=\"0\" width=\"673\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 100px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDelphi Round 1\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" style=\"width: 239px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDelphi Round 2\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristic\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eProfessionals (N=40)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003ePatients (N=7)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eProfessionals (N=30)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003ePatients (N=3)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eAge, years (mean)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e37.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e56.4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e35.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e59.6\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eFemale sex, n (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e29 (72.5%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e6 (85.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e25 (83.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e2 (66.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eProfessional training, n (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e39 (97.5%) physiotherapists 1 (2.5%) other (nurse)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e30 (100%) physiotherapists\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eChronic respiratory disease, n (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eAsthma: 1 (14.3%) Bronchiectasis: 0 COPD: 5 (71.4%) Other: 1 (14.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u0026mdash;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eAsthma: 0 Bronchiectasis: 0 COPD: 3 (100%) Other: 0\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003col\u003e\n \u003cli\u003eOther professionals: nurse; 2) COPD: Chronic Obstructive Pulmonary Disease; 3) Other diseases: pulmonary lymphangioleiomyomatosis.\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eIn both Delphi rounds, all items reached consensus in at least one group. Of these, mutual consensus was achieved for 12 items (71% of the total), including lung function, functional capacity, and health-related quality of life. Patient-only consensus occurred for 5 items, predominantly related to emotional well-being, social support, and financial burden. Professional-only consensus did not occur for any items, indicating that all domains prioritized by professionals overlapped with those also valued by patients. No items remained without consensus. Figure 1 presents a Venn diagram illustrating the overlap and divergence in consensus items between patients and professionals.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eRound-by-Round Changes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBetween Round 1 and Round 2, 5 items gained consensus after feedback, while 0 items lost consensus. In patients, the largest shift was an increased agreement on sociodemographic data (which moved from below threshold in Round 1 to \u0026ge;70% in Round 2). Among professionals, notable changes occurred for economic impact and psychological status, which did not reach consensus in Round 1 but achieved the \u0026ge;70% threshold in Round 2.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsensus Patterns Between Professionals and Patients\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the results presented in Figure 2, the heatmaps illustrate the level of consensus achieved between professionals and patients regarding the domains considered essential for pulmonary rehabilitation records across three points: admission, follow-up, and discharge.\u003c/p\u003e\n\u003cp\u003eAmong professionals, a high level of consensus (\u0026ge;70%) was observed for nearly all domains from the time of admission, particularly comorbidities, dyspnea, exacerbations, functional capacity, quality of life, and risk factors. Some domains, such as psychological status, disease impact, and sociodemographic information, showed variation across the follow-up phases, suggesting that their perceived relevance may change as patients progress through the program.\u003c/p\u003e\n\u003cp\u003ePatients also demonstrated strong consensus across most domains, especially dyspnea, quality of life, disease impact, physical limitations, and psychosocial support. Notably, domains such as economic impact, social support, and psychological status were prioritized more strongly by patients compared to professionals, highlighting the value attributed to subjective and contextual aspects of daily life and well-being.\u003c/p\u003e\n\u003cp\u003eOverall, the analysis reveals convergence between patients and professionals regarding the importance of clinical and functional markers, while also identifying meaningful divergences, particularly in psychosocial dimensions. These findings underscore the need to integrate both perspectives into the development of a minimum data set for pulmonary rehabilitation, ensuring that clinical priorities and patient experiences are equally represented.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eGroup Differences\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStatistically significant differences in agreement proportions between patients and professionals were observed for 4 items (p \u0026lt; 0.05). These differences were most pronounced in domains of sociodemographic data, risk factors, psychological status and economic impact.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study compared patients and healthcare professionals perspectives on essential data items for PR. While a substantial proportion of items achieved mutual consensus, particularly clinical and functional outcomes such as lung function, exercise capacity, and quality of life, important divergences emerged. Professionals prioritized physiological and performance-based indicators, whereas patients emphasized psychosocial and socioeconomic aspects, including emotional well-being, social support, and financial burden. Similar divergences have been reported in previous studies, where professionals tend to value biomedical outcomes and patients focus on lived experiences and daily functioning (7, 13, 14).\u003c/p\u003e\n\u003cp\u003eThe mutual consensus observed for clinical outcomes is consistent with international initiatives on PR core outcome sets (5, 11). However, the patient-only consensus highlights gaps in current MDS frameworks, which often underrepresent domains such as psychological status and socioeconomic burden (8, 21). Addressing these aspects may strengthen patient engagement, improve adherence, and enhance long-term maintenance of PR benefits (22, 23).\u003c/p\u003e\n\u003cp\u003eThe divergence between groups likely reflects their distinct perspectives: professionals\u0026rsquo; focus on physiological measures aligns with training, clinical goals, and accountability for outcomes (10, 15), while patients evaluate PR success through its impact on autonomy, social participation, and emotional well-being (13, 14). This underscores the importance of co-designing MDS frameworks that integrate both perspectives (7).\u003c/p\u003e\n\u003cp\u003eTwo methodological issues should be emphasized. First, the low number of patients (n=7 in Round 1, n=3 in Round 2) limits the representativeness of findings. Future Delphi studies should adopt strategies to enhance patient recruitment and retention, such as partnerships with patient associations, hybrid online/in-person rounds, and tailored support for participants with digital or health limitations(6, 12). Second, the predominance of physiotherapists (97.5%) among professionals may have skewed prioritization toward functional outcomes, underrepresenting perspectives from other disciplines such as psychology, nutrition, and nursing. Broader multidisciplinary involvement is essential to capture the complexity of PR.\u003c/p\u003e\n\u003cp\u003eFinally, while statistically significant differences were found in sociodemographic data, risk factors, psychological status, and economic impact, the small sample size may have reduced power and should be interpreted cautiously.\u003c/p\u003e\n\u003cp\u003eIn summary\u003cstrong\u003e,\u003c/strong\u003e this study provides preliminary evidence that patients and professionals converge on clinical outcomes but diverge on psychosocial and socioeconomic domains. To ensure that PR documentation is both clinically robust and patient-centered, future efforts must prioritize co-designed MDS development with larger, more heterogeneous, and multidisciplinary samples.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study demonstrates that while patients and healthcare professionals share common priorities regarding core outcomes for PR documentation, significant differences remain. Professionals tend to emphasize clinical and technical measures, whereas patients place greater value on psychosocial and socioeconomic aspects. These findings reinforce the need for co-designed Minimum Data Sets that balance biomedical rigor with patient-reported priorities.\u003c/p\u003e\n\u003cp\u003eHowever, the small number of patients and the predominance of physiotherapists represent major limitations. The results should therefore be considered preliminary evidence. Larger, multicenter, and more heterogeneous studies are required to confirm these findings and guide the development of internationally harmonized, patient-centered PR data collection systems. The integration of both perspectives is crucial to ensure that PR documentation worldwide is not only clinically robust but also patient-centered and equitable.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding statement\u003cbr\u003e\u003c/strong\u003eThis work was supported by the Coordination for the Improvement of Higher Education Personnel \u0026ndash; Brazil (CAPES) \u0026ndash; Funding Code 001. No other financial support was received from funding agencies, the public sector, the private sector, or non-profit organizations.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no conflicts of interest related to this study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eSpruit MA, Singh SJ, Garvey C, ZuWallack R, Nici L, Rochester C, et al. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med. 2013;188(8):e13\u0026ndash;64.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHolland AE, Cox NS, Houchen-Wolloff L, Rochester CL, Garvey C, ZuWallack R, et al. Defining modern pulmonary rehabilitation. An official American Thoracic Society workshop report. Annals Am Thorac Soc. 2021;18(5):e12\u0026ndash;29.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRabe KF, Watz H. Chronic obstructive pulmonary disease. Lancet. 2017;389(10082):1931\u0026ndash;40.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRochester CL, Vogiatzis I, Holland AE, Lareau SC, Marciniuk DD, Puhan MA, et al. An official American Thoracic Society/European Respiratory Society policy statement: enhancing implementation, use, and delivery of pulmonary rehabilitation. Am J Respir Crit Care Med. 2015;192(11):1373\u0026ndash;86.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eOrme MW, Free RC, Manise A, Jones AV, Akylbekov A, Barton A et al. Global RECHARGE: establishing a standard international data set for pulmonary rehabilitation in low-and middle-income countries. J global health. 2020;10(2).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eNeedham DM, Sepulveda KA, Dinglas VD, Chessare CM, Friedman LA, Bingham CO III, et al. Core outcome measures for clinical research in acute respiratory failure survivors. An international modified Delphi consensus study. Am J Respir Crit Care Med. 2017;196(9):1122\u0026ndash;30.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJiang Y, Guo J, Sun P, Chen Z, Liu F, Wang S, et al. Perceptions and experiences of older patients and healthcare professionals regarding shared decision-making in pulmonary rehabilitation: A qualitative study. Clin Rehabil. 2021;35(11):1627\u0026ndash;39.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBasara L, Gluncic TJ, Maletic O, Pelicaric D, Grle SP, Samarzija M, et al. Person-centered approach in pulmonary rehabilitation. Int J person centered Med. 2014;4(2):126\u0026ndash;30.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGOLD G. Global Strategy for Prevention, Diagnosis and Management of COPD: 2022 Report. 2023.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eVerburg AC, Zincken J, Kiers H, van Dulmen SA, van der Wees PJ. Experiences of physiotherapists regarding a standard set of measurement instruments to improve quality of care for patients with chronic obstructive pulmonary disease: a mixed methods study. J Patient-Reported Outcomes. 2022;6(1):79.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSouto-Miranda S, Saraiva I, Spruit MA, Marques A. Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey. Thorax. 2023;78(12):1240\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eWilliamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, et al. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:1\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003ePadhye R, Sahasrabudhe SD, Orme MW, Pina I, Dhamdhere D, Borade S, et al. Perspectives of Patients With Chronic Respiratory Diseases and Medical Professionals on Pulmonary Rehabilitation in Pune, India: Qualitative Analysis. JMIR Formative Res. 2023;7(1):e45624.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSouto-Miranda S, Marques A. Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set. Clin Rehabil. 2019;33(4):805\u0026ndash;14.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eArriero-Mar\u0026iacute;n JM, Orozco‐Beltr\u0026aacute;n D, Carratal\u0026aacute;‐Munuera C, L\u0026oacute;pez‐Pineda A, Gil‐Guillen VF, Soler‐Catalu\u0026ntilde;a JJ, et al. A modified Delphi consensus study to identify improvement proposals for COPD management amongst clinicians and administrators in Spain. Int J Clin Pract. 2021;75(5):e13934.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eOkoli C, Pawlowski SD. The Delphi method as a research tool: an example, design considerations and applications. Inf Manag. 2004;42(1):15\u0026ndash;29.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJ\u0026uuml;nger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684\u0026ndash;706.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eCruz MM, Pereira M. Epidemiology of Chronic Obstructive Pulmonary Disease in Brazil: a systematic review and meta-analysis. Ci\u0026ecirc;nc sa\u0026uacute;de coletiva. 2020;25:4547\u0026ndash;57.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDe Groot V, Beckerman H, Lankhorst GJ, Bouter LM. How to measure comorbidity: a critical review of available methods. J Clin Epidemiol. 2003;56(3):221\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLin CMA, Ng N, Orman A, Clement ND, Deehan DJ. Reliability of patient-reported comorbidities: a systematic review and meta-analysis. Postgrad Med J. 2023;99(1169):127\u0026ndash;38.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBurton L-J, Tyson S, McGovern A. Staff perceptions of using outcome measures in stroke rehabilitation. Disabil Rehabil. 2013;35(10):828\u0026ndash;34.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eG\u0026uuml;ell M-R, Cejudo P, Ortega F, Puy MC, Rodr\u0026iacute;guez-Trigo G, Pijoan JI, et al. Benefits of long-term pulmonary rehabilitation maintenance program in patients with severe chronic obstructive pulmonary disease. Three-year follow-up. Am J Respir Crit Care Med. 2017;195(5):622\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eCandemir I, ERG\u0026Uuml;N P, Şahin ME. Maintenance of pulmonary rehabilitation benefits in patients with COPD: is a structured5-year follow-up program helpful? Turk J Med Sci. 2021;51(6):2915\u0026ndash;23.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-7564189/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7564189/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003ePulmonary rehabilitation (PR) requires standardized documentation to monitor outcomes and ensure international comparability. Minimum Data Sets (MDS) are central to this process, but alignment between patients\u0026rsquo; and professionals\u0026rsquo; priorities remains unclear.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eWe conducted a secondary analysis of a two-round Delphi study including 40 PR professionals and 7 patients with chronic respiratory diseases. Items were rated on a 9-point Likert scale; consensus was defined as \u0026ge;\u0026thinsp;70%. Items were classified as mutual, patient-only, professional-only, or no consensus.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eRetention was 75% for professionals and 43% for patients. Mutual consensus was achieved for 12 items (71%), including lung function, functional capacity, and quality of life. Five items reached patient-only consensus, mostly psychosocial and socioeconomic aspects (emotional well-being, social support, and financial burden). No professional-only consensus emerged. Statistically significant differences were observed in sociodemographic data, risk factors, psychological status, and economic impact (p\u0026thinsp;\u0026lt;\u0026thinsp;0.05).\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003ePatients and professionals share core priorities for PR documentation but diverge on psychosocial and socioeconomic aspects. The absence of professional-only consensus highlights alignment on clinical outcomes, while divergences underscore the need for co-designed, patient-centered MDS frameworks. These findings should be considered preliminary due to limited patient participation and require validation in larger, multidisciplinary, and multicenter studies.\u003c/p\u003e","manuscriptTitle":"Patients and Professionals Perspectives on Minimum Data for Pulmonary Rehabilitation: Insights from a Delphi Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-23 07:54:04","doi":"10.21203/rs.3.rs-7564189/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-09-12T09:27:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-12T02:15:18+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-12T02:14:05+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pulmonary Medicine","date":"2025-09-08T12:20:07+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"f712e98b-d73b-4668-b541-c12b9341787b","owner":[],"postedDate":"September 23rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-12-05T09:08:50+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-23 07:54:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7564189","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7564189","identity":"rs-7564189","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}

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