Improving Health Service Access for Youth with Cystic Fibrosis: A Narrative Review

Abstract

Background and Purpose: Cystic Fibrosis (CF) is a complex condition that impacts various functions throughout the body. Improvements in health through technological advances and research have increased the global life expectancy for youth with CF; however, access to resources and support remains suboptimal. Therefore, our primary aim was to identify the most common access issues for youth with CF, with secondary aims of raising awareness about these barriers and proposing potential solutions.
Methods: An initial literature scan was conducted, where five key themes were identified as the most pertinent access issues for youth, including: treatment complexity, distance to care facilities, financial constraints, family involvement, and mental health factors. To explore these access issues in further detail, we conducted an iterative narrative review across four databases.
Results: Twenty-five research articles were identified across the five themes, and included the following designs: review, cross sectional, survey/questionnaire, descriptive, quasi-experimental, longitudinal, cohort, observational, and qualitative research. Expert opinions and news articles were also included using a systematic grey literature scan. Conclusion: While these articles provide the most up-to-date evidence on access issues for youth with CF, current research remains limited. However, nurses can be key advocates for assisting youth populations with CF to better access health services while minimizing potential barriers to care. Some proposed advocacy activities include supporting policy changes through funding for life-enhancing medication and increasing access to digital health services that improve health outcomes for youth with CF.