Caregiver Burden in Growth Hormone Deficiency: A Targeted Review
Author(s)
Amini F1, Alsawady M2, Borecka O3, Bottomley C1
1Vitaccess, Oxford, Oxford, UK, 2Vitaccess, Richmond, UK, 3Vitaccess, Oxford, OXF, UK
Presentation Documents
OBJECTIVES: Growth hormone deficiency (GHD) results in growth retardation and maturation delays, and treatment often involves daily hormone injections. Considering the increasing interest in disease impact on those closest to the patient, this review aimed to identify literature assessing the burden experienced by caregivers of people with GHD.
METHODS: A targeted literature review was performed using the PubMed and Google Scholar databases. The search strategy included disease-specific keywords (i.e., “growth hormone deficiency”, “short stature”, and/or “recombinant human growth hormone therapy”), along with the search terms “caregiver” and/or “carer”.
RESULTS: Seven research papers exploring the impact of GHD on caregivers across the US and Europe were identified, with methodologies ranging from qualitative interviews (two studies) to quantitative surveys (four studies) and a mixed-methods study.
Five studies described the burden of caregiving in terms of an impact on daily life and activities. Common themes included an impact on travel (including family travel and travel planning/logistics), social life, and the burden associated with injection preparation, administration, and storage. One study found that caring for someone receiving weekly treatments resulted in lower burden and life interference than daily treatments. An additional emergent theme (described in four studies) was the emotional impact of caregiving responsibilities. Qualitative research described burden in terms of worry, sadness, guilt, and frustration, as well as difficulty in managing negative reactions from patients and anxiety concerning administering injections. This impact extended to reduced mental wellbeing and self-efficacy. One quantitative study associated caregiving stress with disease severity, which in turn impacted caregivers’ overall quality of life.CONCLUSIONS: This review identified literature describing caregiver burden in GHD in terms of an impact on daily life and activities and emotional wellbeing. Inclusion of the caregiver perspective in healthcare decision-making is essential to capture the full picture of the burden of GHD and its treatment.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
SA25
Topic
Study Approaches
Topic Subcategory
Literature Review & Synthesis
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Rare & Orphan Diseases