Feasibility of tracking mental health in cystic fibrosis registries: lessons from current practice

IF 3.3 3区医学 Q2 CARDIAC & CARDIOVASCULAR SYSTEMS

Respiratory medicine Pub Date : 2026-03-01 Epub Date: 2026-02-12 DOI:10.1016/j.rmed.2026.108703

Anna M. Georgiopoulos , Alexandra L. Quittner , Michael S. Schechter , Jianghua He , Nivedita Chaudhary , Riley C. Merowitz , Ruobin Wei , Edward R. Canda , Katie Kirby , Laura Tillman , Cathy T. Price , Beth A. Smith

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引用次数: 0

Abstract

Background

Patient registries are central to improving cystic fibrosis (CF) treatment and outcomes. Although mental health (MH) is a top research priority, MH data in the CF Foundation Patient Registry (CFFPR) is limited. We aimed to inform the feasibility of including additional MH variables in CF registries such as the CFFPR.

Methods

We conducted a cross-sectional healthcare provider survey (N = 100; March-April 2023) regarding current practices in MH screening and data tracking at US CF programs. We then purposively sampled survey respondents to participate in a focus group and post-survey (N = 11; September 2024).

Results

Nearly all programs screened adolescents and adults for anxiety/depression with GAD-7/PHQ-9 and 95% systematically tracked MH data (e.g., in database, spreadsheet, electronic medical records). Respondents with >5 years of CF experience were more likely to track total and item-level GAD-7/PHQ-9 scores; there were no differences by region or program size. Over 80% screened using paper. Half screened for MH side effects of modulators; 16% screened for MH conditions beyond anxiety/depression. Few (27%) pediatric programs screened children <12 years. Focus group participants endorsed adding new variables to the CFFPR, identifying barriers, facilitators and resource needs.

Conclusions

CF programs are successfully screening and tracking GAD-7/PHQ-9 scores, supporting feasibility of including these data in patient registries. Further work to increase electronic screening and to recommend screening measures for children <12 and for other MH conditions is needed. Expanding the scope of mental health data collection will enable CF registries to support longitudinal CF mental health research that addresses identified priorities.

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在囊性纤维化登记中跟踪精神健康的可行性：来自当前实践的教训。

背景：患者登记是改善囊性纤维化（CF）治疗和预后的核心。虽然精神健康（MH）是一个最重要的研究重点，但CF基金会患者登记处（cfpr）的MH数据有限。我们的目的是告知在CF注册表（如cfpr）中包括其他MH变量的可行性。方法：我们进行了一项横断面医疗保健提供者调查（N=100； 2023年3月至4月），涉及美国CF项目中MH筛查和数据跟踪的当前做法。然后，我们在2024年9月有目的地抽样调查对象参加焦点小组和后调查（N=11）。结果：几乎所有的项目都用GAD-7/PHQ-9筛查青少年和成年人的焦虑/抑郁，95%的项目系统地跟踪了MH数据（例如，在数据库、电子表格、电子病历中）。具有50年CF经验的被调查者更有可能跟踪总体和项目层面的GAD-7/PHQ-9得分；不同地区或项目规模之间没有差异。80%以上使用纸张筛选。对调制器的MH副作用进行半筛选；16%的人接受了焦虑/抑郁以外的MH筛查。结论：CF项目成功筛查和跟踪GAD-7/PHQ-9评分，支持将这些数据纳入患者登记的可行性。进一步加强电子筛查并为儿童推荐筛查措施

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Respiratory medicine 医学-呼吸系统

CiteScore

7.50

自引率

0.00%

发文量

199

审稿时长

38 days

期刊介绍： Respiratory Medicine is an internationally-renowned journal devoted to the rapid publication of clinically-relevant respiratory medicine research. It combines cutting-edge original research with state-of-the-art reviews dealing with all aspects of respiratory diseases and therapeutic interventions. Topics include adult and paediatric medicine, epidemiology, immunology and cell biology, physiology, occupational disorders, and the role of allergens and pollutants. Respiratory Medicine is increasingly the journal of choice for publication of phased trial work, commenting on effectiveness, dosage and methods of action.