Peer-mentoring, Quality of Life and Caregiver Burden in Patients With Chronic Kidney Disease and Their Caregivers
Condition: Chronic Kidney Disease
MeSH terms: Kidney Diseases; Renal Insufficiency, Chronic; Caregiver Burden
Study type: Interventional

Summary: 
      Receiving supportive mentoring from well-adjusted individuals who share similar experiences
      has had a positive influence on adjustment with some chronic diseases. 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 six
      months of PFPP peer-mentoring, along with an informational text; (2) online PFPP-individuals
      will receive six months of online peer-mentoring modeled after the PFPP program, along with
      an informational text; and (3) information-only control group-individuals will receive the
      text of the material provided to the other two groups. The study team's decision to include
      an online version is based on suggestions by previous participants who indicated that this
      would be convenient for individuals for whom distance and geographic location are major
      considerations of participation.

      The investigators expect that both face-to-face and 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. The investigators also expect that
      mentorship will lead to improved engagement of patients in their own care.
    

Detailed description: 
      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 United States 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 their caregivers 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 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 six months of PFPP peer-mentoring, along with an informational text; (2) online
      PFPP-individuals will receive six months of online peer-mentoring modeled after the PFPP
      program, along with an informational text; and (3) information-only control group-individuals
      will receive the text of the material provided to the other two groups. The study team's
      decision to include an online version is based on suggestions by previous participants who
      indicated that this would be convenient for individuals for whom distance and geographic
      location are major considerations of participation.

      The investigators expect that both face-to-face and 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. The investigators also expect that
      mentorship will lead to improved engagement of patients in their own care.
    

Intervention name(s): Mentoring
Intervention type(s): Other
Intervention description(s): Six months of peer-mentoring.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: peer mentoring; chronic kidney disease; quality of life; pcori; caregiver burden