Unmet needs and challenges faced by caregivers in tuberous sclerosis complex: An integrative review

Abstract

Purpose

The burden of disease associated with tuberous sclerosis complex (TSC) places significant strain on both individuals with the condition and their families. Research has primarily focused on patients, with limited attention to caregiver experiences. This review aims to summarize current knowledge, identify key burden factors, and highlight the unmet needs of caregivers in TSC.

Methods

This review was conducted following PRISMA guidelines. A comprehensive search of electronic databases was carried out to identify original research articles. Two reviewers independently screened the studies for eligibility. The quality of the included studies was assessed using the AXIS tool. Relevant data were extracted, and a narrative synthesis was performed to collate and interpret the findings.

Results

Nine studies involving a total of 982 informal caregivers of both children and adults with TSC were included in the review. All included studies were carried out in Europe and the United States. Five primary factors, namely the care recipient’s age, caregivers’ characteristics, disease-related features, caregivers’ compromised mental health, and disrupted family dynamics, were identified as central themes in shaping caregivers’ experiences. Caregivers consistently reported a range of unmet needs, including inadequate access to psychological support, insufficient information about TSC management, and a lack of coordinated healthcare services.

Conclusion

Caregivers of individuals with TSC face significant challenges, yet meaningful support is limited. More research is needed to understand their burden, while developing tailored support, better resource access, and coordinated care are essential to improve their well-being and care quality.