Data Sheet 2_Unveiling the burden of COPD: perspectives on a patient-reported outcome measure to support communication in outpatient consultations—an interview study among patients.pdf

IntroductionChronic Obstructive Pulmonary Disease (COPD) profoundly affects physical, psychological, and social aspects of life, yet these issues often remain unaddressed. Patient-Reported Outcomes Measures (PROM) have the potential to address these issues by promoting person-centered communication. However, their impact in COPD practice remains uncertain. This study aimed to investigate how patients with COPD perceive the usefulness of a new holistic PROM for general palliative care (PRO-Pall) before and during outpatient consultations.
MethodsSemi-structured telephone interviews were conducted with patients diagnosed with moderate to very severe COPD, 2-5 days after consultation at a respiratory outpatient clinic in Denmark. Interviews were transcribed verbatim and analyzed inductively using qualitative content analysis.
ResultsNine patients (five males; mean age: 66 years) participated in the study with four themes emerging: (1) Unlocking thoughts: Completing PRO-Pall stimulated patients’ self-reflection, which revealed previously overlooked COPD-related issues, particularly psychosocial challenges. (2) Unmasking concerns: Patients felt encouraged to be honest, rather than concealing their concerns. (3) Breaking the ice: PRO-Pall responses enabled direct questioning by healthcare professionals during consultations, initiating discussions on patients’ sensitive yet vital COPD-related matters. (4) Deepening the dialogue: Healthcare professionals’ targeted and attentive approach fostered more holistic and meaningful discussions, providing most patients with a deeper understanding of psychosocial issues affecting their well-being.
ConclusionCompleting PRO-Pall prior to outpatient consultations prompted most patients with COPD to unveil previously unacknowledged psychosocial challenges. During consultations, addressing these challenges initiated open discussions on individual concerns, enhancing most patients’ understanding of the multifaceted burden of COPD.

引言 慢性阻塞性肺疾病（Chronic Obstructive Pulmonary Disease，COPD）会严重影响患者的生理、心理及社会生活质量，但此类问题往往未得到充分重视与解决。患者报告结局量表（Patient-Reported Outcomes Measures，PROM）可通过促进以患者为中心的沟通，为解决上述问题提供可行路径。然而，其在COPD临床实践中的应用效果仍不明确。本研究旨在探讨慢性阻塞性肺疾病患者在门诊会诊前及会诊过程中，对一款用于全人舒缓照护的新型整体性患者报告结局量表（PRO-Pall）的实用性认知。

方法 本研究于丹麦某呼吸科门诊会诊后2~5天，对确诊为中度至极重度COPD的患者开展半结构化电话访谈。访谈内容逐字转录后，采用质性内容分析法进行归纳式分析。

结果 本研究共纳入9例患者（5例男性，平均年龄66岁），最终提炼出4个核心主题：（1）唤醒思考：填写PRO-Pall量表可激发患者的自我反思，使其意识到此前被忽视的与COPD相关的问题，尤其是心理社会层面的挑战。（2）直面顾虑：患者表示填写该量表促使他们坦诚表达自身想法，而非隐瞒顾虑。（3）打破僵局：基于PRO-Pall量表的填写结果，医护人员可在会诊中直接展开提问，开启针对患者敏感却至关重要的COPD相关议题的讨论。（4）深化对话：医护人员针对性且专注的沟通方式，促成了更具整体性与意义的对话，使多数患者得以更深入地理解影响其健康福祉的心理社会问题。

结论 在门诊会诊前填写PRO-Pall量表，可促使多数COPD患者披露此前未被意识到的心理社会层面挑战。会诊过程中，针对此类问题展开的讨论可引导患者坦诚表达个体顾虑，提升多数患者对COPD多维度负担的认知。