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Published on: June 23, 2015
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Patient Perspectives on ADPKD
Matthew Gittus1, Tess Harris2, Albert Cm Ong1
1Academic Nephrology Unit, Department of Infection, Immunity, and Cardiovascular Disease, The Medical School, University of Sheffield, Sheffield, UK; Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Advances in Kidney Disease and Health
|April 23, 2023
Summary
Autosomal dominant polycystic kidney disease (ADPKD) significantly burdens patients and caregivers, impacting quality of life. This review synthesizes patient perspectives on ADPKD management and its multifaceted effects.
Area of Science:
- Nephrology
- Genetics
- Public Health
Background:
- Autosomal dominant polycystic kidney disease (ADPKD) is the most prevalent inherited renal disorder.
- ADPKD imposes substantial physical, psychological, and social burdens, diminishing patients' quality of life.
Approach:
- A systematic literature review adhering to PRISMA guidelines was conducted.
- Searched Medline, Embase, Cochrane Library, and Web of Science databases (inception to April 2022).
- Included 28 studies reporting patient or caregiver perspectives on ADPKD, analyzed via inductive thematic analysis.
Key Points:
- Six key themes emerged: diagnosis/monitoring/screening, symptoms, lifestyle/dietary interventions, psychosocial impact, future planning, and healthcare interactions.
- Patients and caregivers experience significant burden and uncertainty throughout the ADPKD journey.
- Impact spans from initial screening to renal replacement therapy and long-term planning.
Conclusions:
- Patient perspectives reveal a profound and pervasive burden associated with ADPKD.
- Understanding these patient-centered experiences is crucial for improving care and support.
- Healthcare systems must better address the holistic needs of individuals with ADPKD and their families.
Keywords:
Autosomal dominantHealth knowledgePatient-centered carePolycystic kidneyQualitative researchMore Related Videos
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