Outcomes of Importance to Young People with CKD and Their Caregivers

For young people living with chronic kidney disease (CKD) and their families, the consequences of the disease are devasting, long-term, and wide-ranging. Compared with age-matched peers, the mortality rate among children with CKD is 30 times higher and quality of life is marked by debilitating symptoms, comorbid conditions, burdens of treatment, side effects, and complications. Impaired cognitive and psychosocial development and growth are associated with poor outcomes that last through adulthood, including lower educational level and vocational and social difficulties. Caregivers and family members of a child with CKD experience psychological distress and financial burdens.

Previous studies have identified outcomes that are important to adults with CKD, but there are few data available regarding outcomes that are important to young people with CKD and their caregivers. Camilla S. Hanson, PhD, and colleagues recently conducted a study designed to identify outcomes that are important to young people across all stages of CKD as well as to caregivers to help inform patient-centered decision making in CKD care. Results of the study were reported in the American Journal of Kidney Diseases [2019;74(1):82-94].

Patients were recruited from three centers in Australia (Sydney, Brisbane, and Melbourne), two centers in Canada (Vancouver and Calgary), and one center in the United States (Houston, Texas). Inclusion criteria were patients 8 to 21 years of age with CKD stages 1-5 and non–dialysis-dependent, receiving dialysis, or transplant recipient with functioning transplant; caregivers of patients 0 to 21 years of age with CKD were also eligible to participate.

The researchers conducted face-to-face focus groups using the nominal group technique, including brainstorming to develop a list of outcomes important for research in young people with CKD. Individual participants then prioritized the outcomes and discussed their preferences as a group. Separate groups for patients and caregivers were conducted.

The study included 62 caregivers (in eight groups) and 34 patients (in eight groups). At least one parent of 29 patients participated in the study. Caregivers consisted of 10 pairs of participants who were related or spouses. Patient age ranged from 8 to 21 years, 56% (n=19) were male, 50% (n=17) had non–dialysis-dependent CKD, 15% (n=5) were on dialysis therapy (one hemodialysis and four peritoneal dialysis), and 35% (n=12) had received a transplant. Caregivers were 25 to 60 years of age (with children 1-22 years of age), and 76% were mothers. Forty percent (n=25) of the caregivers had children who had non–dialysis-dependent CKD, 23% (n=14) had children on dialysis therapy, and 35% (n=22) had children with a transplant. One parent did not report the child’s CKD stage.

The patients ranked 34 outcomes and the caregivers ranked 33 outcomes; in combination, there were 48 unique outcomes included in the study. The patients ranked the following five outcomes highest: (1) survival, importance score 0.25; (2) physical activity/sport, importance score 0.24; (3) fatigue, importance score 0.20; (4) lifestyle restrictions, importance score 0.20; and (5) growth, importance score (0.20). The five highest outcomes for caregivers were: (1) kidney function, importance score 0.53; (2) survival, importance score 0.28; (3) infection, importance score 0.22; (4) anemia, importance score 0.20; and (5) growth, importance score 0.17. In both patients and caregivers, survival, growth, kidney function, and infection were in the top ten outcomes.

For patients, physical activity/sports participant was important across all treatment types. Patients on dialysis therapy ranked lifestyle restriction higher compared with patients with CKD stages 1 to 5 and transplant recipients. Patients in all age groups included survival, fatigue, and lifestyle restrictions among the top ten outcomes.

Growth, kidney function, and survival were important for caregivers across all treatment types. Growth was ranked as more important among caregivers of younger patients; school was more important to caregivers of young adults. There were differences in importance scores by country; however, growth, fatigue, and survival were in the top ten for all patients, and kidney function and growth were in the top ten for all caregivers.

The researchers identified themes that reflected patient and caregiver immediate and current priorities: wanting to feel normal, strengthening resilience for daily challenges, imminent threats to life, devastating family burden, and seeking control over current health. Themes that reflected future and long-term focus were: parental responsibility to protect health and development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive interventions, and managing expectations.

Limitations to the study cited by the authors included recruiting only English-speaking participants, participation from only one child on in-center hemodialysis therapy, and limited data on comorbid conditions of the participants.

In conclusion, the researchers said, “Kidney function, infection, survival, and growth are shared priorities for young people and their caregivers across all stages of CKD. Young people focus on current impacts of CKD, including physical activity, fatigue, lifestyle restrictions, hospitalization, social functioning, and medication burdens, because these impair their ability to feel normal. Caregivers were focused on gaining control over their child’s current health, believed the family and the financial impact to be important considerations, and placed emphasis on their child’s long-term health, development, and survival. Research that reports outcomes that are important to young people with CKD and their caregivers can better inform shared decision making, The outcomes identified in this study will inform the development of a core outcome set through the SONG-Kids initiative.”

Takeaway Points

  1. Using the nominal group technique, researchers conducted a study to identify outcomes associated with chronic kidney disease (CKD) important to young people with CKD and their caregivers.
  2. Patients and caregivers from six centers in Australia, Canada, and the United States participated; kidney function, infection, survival, and growth were the highest priorities for patients and caregivers.
  3. Young people with CKD ranked outcomes that directly affected their lifestyle and sense of normality highly; caregivers highest priorities were the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.