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Improving patient quality of life and caregiver burden by a peer-led mentoring program for patients with chronic kidney disease and their caregivers
Investigator (PI): Ghahramani, Nasrollah
Performing Organization (PO): (Current): Penn State University, PennState Health, Milton S. Hershey Medical Center / (717) 531-8521
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2020
Record Source/Award ID: PCORI/CDR-1310-07055
Funding: Total Award Amount: $1,837,255
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Chronic kidney disease is very common in the United States, and throughout the world. An increasing number of individuals are diagnosed with late stages of chronic kidney disease which require treatment with either dialysis or kidney transplant. The number of individuals currently requiring such treatment in the US is greater than 600,000. Patients with advanced kidney disease and their family members face many challenges in dealing with the disease and the decisions that relate to choice of treatment. Quite frequently, patients and their family members are faced with the need to decide on a treatment option without full awareness of all the options. In such cases, they might make choices with which they will not be satisfied. Poor satisfaction with treatment choice is likely to result in poor quality of life for the patients and increased sense of burden for the caregiver. Receiving supportive mentoring from well-adjusted individuals who share similar experiences has had a positive influence on adjustment with some chronic diseases. Since 2004, the Kidney Foundation of Central Pennsylvania has conducted a program to formally train patients with kidney disease and caregivers of these patients to become mentors for patients or caregivers who feel they might benefit from such mentoring. The program, the Patient and Family Partner Program (PFPP), was envisioned and designed by a patient with chronic kidney disease and has until now trained approximately 130 mentors. In this study, patients with advanced chronic kidney disease and caregivers of such patients will be randomly assigned to one of three groups: 1) face-to-face PFPP individuals will receive 6 months of PFPP peer mentoring, along with an informational text; 2) online PFPP individuals will receive 6 months of online peer mentoring modeled after the PFPP program, along with an informational text; or 3) information-only control group individuals will receive the text of the material provided to the other two groups. Our decision to include an online version is based on suggestions by previous participants who indicated that an online version is convenient for individuals for whom distance and geographic location are major considerations of participation. We expect that both the face-to-face and the online peer mentorship programs will result in improved quality of life among patients with advanced kidney disease and decreased feeling of burden among caregivers of these patients. We also expect that mentorship will lead to improved engagement of patients in their own care.
MeSH Terms:
  • * Caregivers
  • Choice Behavior
  • Humans
  • Internet
  • Mentors
  • Patient Participation
  • Peer Group
  • Pennsylvania
  • Quality of Health Care
  • * Quality of Life
  • Renal Insufficiency, Chronic /*psychology
  • /*therapy
  • United States
Country: United States
State: Pennsylvania
Zip Code: 17033
UI: 20152092
CTgovId: NCT02429115
Project Status: Completed
Record History: ('2019: Project extended to 2020\n2017: Project extended to 2019',)