JMIR Publications

ABSTRACT

Background:

Chronic obstructive pulmonary disease (COPD) is a leading global public health challenge, characterized by persistent airflow limitation and associated with significant morbidity and mortality. Dysphagia, a common comorbidity in COPD patients, affects approximately 27%-51% of individuals and becomes more prevalent as the disease progresses. This swallowing impairment creates a vicious cycle by increasing the risk of aspiration during oral intake, exacerbating pulmonary complications, and accelerating disease deterioration. Beyond physiological impacts, dysphagia contributes to nutritional deficits, weight loss, compromised immunity, and psychological distress, including anxiety, social isolation, and reduced quality of life. Despite the high prevalence and significant impact of dysphagia in COPD patients, current clinical practices often overlook the specific informational needs of these patients during rehabilitation. While recent advancements in COPD-related dysphagia research have focused on pathological mechanisms, diagnostic criteria, and therapeutic interventions, critical gaps remain in understanding how to address patients' rehabilitation needs and informational requirements during dysphagia management. Patient involvement in rehabilitation decision-making processes is crucial for enhancing treatment adherence and satisfaction. However, traditional care models often fail to adequately assess patients' psychological and informational needs, leading to low patient participation in rehabilitation and limited understanding of treatment plans. To address these challenges, this study developed and validated a Question Prompt List (QPL) specifically designed for COPD patients with dysphagia. The QPL is a structured question inventory intended to enhance patient-clinician communication and promote informed decision-making. While QPLs have demonstrated effectiveness in improving health literacy and care engagement in various clinical contexts, such as oncology care, diabetes management, and surgical decision-making, their application in COPD-related dysphagia rehabilitation remains unexplored. This study aims to bridge this knowledge gap by creating a tool that empowers patients to articulate their care needs, actively participate in rehabilitation decisions, and inform evidence-based nursing strategies for personalized and precision-focused care.

Objective:

To develop and validate a decision support checklist addressing informational needs for pulmonary rehabilitation in chronic obstructive pulmonary pulmonary disease (COPD) patients with dysphagia, aiming to enhance patient-centered decision-making during rehabilitation.

Methods:

From April to October 2024, a mixed-methods approach was employed: 1) Literature synthesis and semi-structured interviews with 12 clinical experts; 2) Two-round Delphi consensus process (n=25 experts/round); 3) Iterative refinement through patient feedback (n=15); 4) Feasibility testing via convenience sampling (n=45 patients). Content validity, expert authority (Cr), and consensus stability were systematically evaluated.

Results:

High expert engagement was achieved (Round 1: 92% valid response rate, Cr=0.948; Round 2: 96% response rate, Cr=0.942). Strong consensus emerged in Round 2 (Kendall's W: importance=0.218, relevance=0.204; P<0.001). The finalized checklist comprised 7 domains and 37 evidence-based items. Clinical feasibility testing revealed 62.3% (95% CI: 48.9-71.1%) of patients reported improved decision-making autonomy and information comprehension.

Conclusions:

This dysphagia-specific decision support tool demonstrates robust content validity and clinical utility for COPD rehabilitation, effectively bridging knowledge gaps and empowering patients in shared decision-making processes. Clinical Trial: This study was approved by the Ethics Committee of YIXING NO.2 PEOPLE 'S HOSPITAL(Yixing Occupational Disease Institute) with the approval number YXEH20241002. It was registered at the Center for Evidence-Based Medicine, Fudan University, under the registration number ER20240985.