Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience

Hempstead, Sarah E.; Fredkin, Kelsey; Hovater, Cade; Naureckas, Edward T.

doi:10.2196/17875

Cited by 4 publications

(3 citation statements)

References 27 publications

(27 reference statements)

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“…This experience has emphasized the importance of taking into consideration what participants and their families value most when being involved in research studies. Participant and family participation and input in the development of guidelines and methodology can provide insight to clinicians that could be otherwise overlooked [35]. This insight is valuable during the design phase but is still important to consider at all stages of the study, as demonstrated in the methodology outlined in this manuscript.…”

Section: Resource Limitationmentioning

confidence: 96%

Methodological Challenges in Investigating Supracondylar Fractures of the Humerus From a Child’s Viewpoint: Evolution of Study Protocol

Lim¹,

Chhina²,

Pike³

et al. 2020

JMIR Res Protoc

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Background Outdoor play and risk-taking behaviors, including play at heights, are important to children’s physical, social, and cognitive development. These aspects of play are important to consider when informing prevention policies for serious injuries that commonly occur on play structures. Supracondylar fractures of the humerus (SCH) are the most common type of elbow fractures that result from falls on an outstretched hand among healthy children. Despite being one of the leading causes of admission to the hospital and surgical intervention, the details surrounding the cause of these injuries are often not recorded. Previous research has correlated decreased overall playground safety with higher rates of SCH fractures. Play structure height and the type of undersurface have been identified as potential risk factors for severe injuries, including SCH fractures, in part due to low compliance with safety standards. This paper explores the challenges we encountered designing the study and the resulting insights and methodological modifications we made. Objective The aim of this paper is to discuss the challenges related specifically to clinical research in pediatrics and strategies developed to conduct a study that prioritizes the engagement and perspective of children and their families. Methods To explore the link between the severity of SCH fractures and children’s behavioral, environmental, and mechanistic factors, we conducted a mixed-methods study. Results During phase 1 (the original methodology) from April 2017 to July 2018, there were 58 eligible study participants and 17 were recruited. For phase 2 (the revised methodology) between October 2018 and October 2019, there were 116 eligible participants and 47 were recruited. Conclusions The changes in methodology made following the first phase of data collection were effective in our ability to recruit participants. By identifying and addressing challenges pertaining to recruitment and resource limitations, we were able to collect data in a concise manner while not compromising the quality of the data and make for an easily adoptable methodology for other sites interested in participating in the study. We hope that future studies that plan to employ a similar methodology can gain insight through the methodological challenges we have encountered and the way we adapted the methodology to build a more pragmatic approach. International Registered Report Identifier (IRRID) DERR1-10.2196/21816

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Section: Resource Limitationmentioning

confidence: 96%

Methodological Challenges in Investigating Supracondylar Fractures of the Humerus From a Child’s Viewpoint: Evolution of Study Protocol

Lim¹,

Chhina²,

Pike³

et al. 2020

JMIR Res Protoc

View full text Add to dashboard Cite

show abstract

“…Their participation can be through open public forums, surveys on guideline topics, review, and feedback, or as part of guideline committees or focus groups. PwCF and their families add lived experience to guideline creation and their participation has been overwhelmingly positive in improving the guideline creation project [80]. PwCF and their families have partnered with their care team on quality improvement initiatives, providing unique perspectives to improved CF care by working together with a shared aim [81].…”

Section: Coproductionmentioning

confidence: 99%

A new era in cystic fibrosis care: always changing and adapting

Diener,

Huertero,

Stables-Carney

et al. 2023

Current Opinion in Pediatrics

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Purpose of review This review focuses on sharing the current and changing cystic fibrosis (CF) care model. This includes changes in CF care as a chronic disease with availability of new revolutionary, highly effective therapies as well as incorporation of shared decision-making, coproduction of care, quality improvement, telemedicine, and remote patient monitoring. Recent findings Changes in the CF management, the CF patient population, and CF care team are described as well as how CF care has adapted to these changes. Summary CF is a chronic, multisystem disease requiring a large specialized multidisciplinary care team for effective treatment. With improvements in CF care and new treatments, people with CF are living longer and healthier lives. As new issues arise, the CF team needs to adapt. This was highlighted by the introduction of highly effective cystic fibrosis transmembrane conductance regulator modulator therapy, which targets the cellular defect in CF, the COVID-19 pandemic, which lead to the incorporation of telehealth and remote patient monitoring into the CF care model, and the partnering with people with CF and families through shared decision-making and coproduction.

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“…Patient participation in research is increasingly desired in developing relevant health care services. [17][18][19] Some studies used the participation of CF patients in the identification of research priorities, 20 in clinical guideline development, 21 or in a quality improvement program 22 have demonstrated the relevance of the participation of these patients who have a experiential knowledge of their disease. 23 The interests of involving patients, healthcare professionals, and researchers in the co-design of a program aiming at improving medication adherence are multiple.…”

Section: Introductionmentioning

confidence: 99%

A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit

Viprey¹,

Mougeot²,

Dima³

et al. 2023

PPA

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Cystic fibrosis (CF) is an inherited life-shortening disease involving a significant treatment burden. Few interventions have been proven effective in improving adherence, and of these fewer have been adopted for implementation. Patient participation in research is increasingly desired in developing relevant health care services. A participatory approach was implemented in an adult CF center to co-design an adherence-enhancing intervention toolkit. We aimed to report on the participatory process and the results regarding the co-designed intervention. Patients and Methods: Two focus group sessions and four working sessions were conducted at 4-week intervals with three healthcare professionals (HCP; physician, nurse, physiotherapist), eight patients, and two researchers (sociologist, public health pharmacist). The two initial focus group sessions were dedicated to the collection of narratives about CF treatment experiences to identify drivers of adherence. The next four working sessions were dedicated to the reflection on solutions that could alleviate the difficulties identified and be used in current clinical practice. The researchers observed during all sessions the interactions between participants, group dynamics, and process of implementation of the collective reflection. Results: The process facilitated an active participation of patients and HCP, who contributed equally to the intervention development. The co-design adherence-enhancing intervention toolkit consisted in a self-questionnaire to be completed by patients before the medical consultation and used as a communication support during the consultation, plus a toolkit of solutions to be proposed by the HCP for each barrier identified by patients, and to be followed up during the next consultation. Conclusion:This study demonstrated that a participatory approach involving CF patients and HCP lead to the development of an adherence-enhancing intervention toolkit, using a 6-session format; the benefits of the co-designed intervention on the medication adherence have yet to be tested in a multicenter, open-label study in 3 centers in France.

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Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience

Cited by 4 publications

References 27 publications

Methodological Challenges in Investigating Supracondylar Fractures of the Humerus From a Child’s Viewpoint: Evolution of Study Protocol

Methodological Challenges in Investigating Supracondylar Fractures of the Humerus From a Child’s Viewpoint: Evolution of Study Protocol

A new era in cystic fibrosis care: always changing and adapting

A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit

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