University of Miami, Coral Gables, Florida 33146, USA.
Pediatr Pulmonol. 2010 Feb;45(2):157-64. doi: 10.1002/ppul.21164.
Treatment regimens for patients with cystic fibrosis (CF) are time-consuming and complex, resulting in consistently low adherence rates. To date, few studies have evaluated innovative technologies to improve adherence in this population. Current infection control guidelines for patients with CF seek to minimize patient-to-patient transmission of potential pathogens. Thus, interventions must avoid face-to-face contact and be delivered individually, limiting opportunities for peer support. This study aimed to develop and assess a web-enabled cell phone, CFFONE, designed to provide CF information and social support to improve adherence in adolescents with CF.
The acceptability, feasibility, and utility of CFFONE were evaluated with health care professionals (n = 17) adolescents with CF aged 11-18 years old (n = 12), adults with CF aged 21-36 years old (n = 6), parents of adolescents with CF (n = 12), and technology experts (n = 8). Adolescents also tested a prototype of CFFONE (n = 9). Qualitative and quantitative data were collected.
Focus group data with health care professionals indicated a need for this intervention, and indicated that CFFONE would be likely to improve knowledge and social support, and somewhat likely to improve adherence. Adolescent, adults, and parents all rated CFFONE as likely to improve adherence. Technology experts rated the prototype design and format as appropriate.
The current study provided some support from key stakeholders for this intervention to improve adherence in adolescents with CF. Next steps include a multi-center trial of the efficacy and safety of CFFONE.
囊性纤维化(CF)患者的治疗方案耗时且复杂,导致依从率始终较低。迄今为止,很少有研究评估创新技术以提高该人群的依从性。目前针对 CF 患者的感染控制指南旨在最大程度地减少潜在病原体在患者之间的传播。因此,干预措施必须避免面对面接触,并单独进行,从而限制同伴支持的机会。本研究旨在开发和评估一种基于网络的手机 CFFONE,旨在提供 CF 信息和社会支持,以提高 CF 青少年的依从性。
通过医疗保健专业人员(n = 17)、11-18 岁 CF 青少年(n = 12)、21-36 岁 CF 成年人(n = 6)、CF 青少年的父母(n = 12)和技术专家(n = 8)评估 CFFONE 的可接受性、可行性和实用性。青少年还测试了 CFFONE 的原型(n = 9)。收集了定性和定量数据。
医疗保健专业人员的焦点小组数据表明,需要进行这种干预,并且表明 CFFONE 可能会提高知识和社会支持,并在一定程度上提高依从性。青少年、成年人和父母都认为 CFFONE 可能会提高依从性。技术专家认为原型设计和格式合适。
目前的研究为该干预措施提高 CF 青少年依从性提供了一些来自主要利益相关者的支持。下一步包括 CFFONE 功效和安全性的多中心试验。