Caregivers of patients with autosomal dominant polycystic kidney disease report burdens
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More than half of caregivers of patients with autosomal dominant polycystic kidney disease report significant emotional impacts on their daily life, according to published data.
Further, caregivers who also have autosomal dominant polycystic kidney disease (ADPKD) experience increased burdens, according to the study in Kidney Medicine.
“Spill-over impacts of ADPKD on caregivers increase with more advanced chronic kidney disease, and these impacts have been described via health – economic assessments as indirect costs of ADPKD, which include loss of productivity because of caregiving and incremental health care costs incurred by caregivers,” Dorothee Oberdhan, MS, lead author and director of patient-centric outcomes at Otsuka Pharmaceutical Companies, and colleagues wrote. They added, “To gain a better understanding of the burden ADPKD places on caregivers, we conducted a qualitative study with caregivers of ADPKD patients. Discussions covered topics related to physical, emotional, social and economic impacts and the impact on daily activities.”
In a qualitative study, researchers examined 139 individuals who cared for a child or an adult diagnosed with ADPKD from 14 countries in North America, South America, Asia, Australia and Europe. A total of 25 caregivers also had a diagnosis of ADPKD.
Researchers interviewed participants one-on-one or in group settings to determine their experiences caring for patients with ADPKD. Participants shared how caregiving impacted their daily lives, physically, emotionally, socially and economically.
All discussions were transcribed and coded before being summarized by themes, concepts and caregiver relationship.
Overall, 74.1% of caregivers reported significant impacts on their emotional lives, 38.1% reported impacts on their social lives, 26.6% reported lost work productivity and 25.2% reported reduced sleep. Additionally, 23.7% reported being worried about their finances.
Researchers noticed similar patterns between caregivers with and those without ADPKD, except that more caregivers without ADPKD experienced loss of sleep (28.9% vs. 8%), leisure activities (40.4% vs. 28%) and work/employment (29.8% vs. 12%).
“As the disease progresses, the burdens imposed on caregivers of individuals with ADPKD, which affect emotional and mental health, social relationships, sleep and work and productivity impairment, may be more likely to resemble the multiple burdens raised by the late stages of other chronic kidney diseases and indeed other chronic conditions in general,” Oberdhan and colleagues wrote. “Additionally, it might be useful to document caregiver relationships more formally to better anticipate support that might be needed as the disease progresses and caregiver relationships change over time.”
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