Peer-mentoring, Quality of Life and Caregiver Burden in Patients With Chronic Kidney Disease and Their Caregivers

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.

Inclusion Criteria:

- Diagnosed with stage 4 or 5 CKD by a physician / or caregiver to a patient with stage
4 or 5 CKD;

- at least 18 years of age;

- able to read and write in English at the 8th grade level;

- access to computer with internet and email capability

Exclusion Criteria:

- inability to provide consent;

- younger than 18 years of age;

- prisoners