Introduction
Quality of life: concepts and measurement instruments
Measure | Age range (years) | Length | Content | Range of Cronbach's α across domains Child report* | Range of Cronbach's α across domains Parent report* | Remarks |
---|---|---|---|---|---|---|
Generic measures of quality of life | ||||||
Pediatric Quality of Life Inventory (PedsQL) [19] | CR: 8–18 PR: 2–18 | 23 items | Physical functioning Emotional functioning Social functioning School functioning | 0.68-0.88 | 0.75-0.90 | Brief, valid, reliable, and developmentally appropriate measure. Translated into many languages Normative samples available in several countries |
Child Health and Illness Profile-Adolescent Edition (CHIP-AE) [20] | CR: 10–18 | 107 items | Satisfaction Discomfort Resilience Risks Disorders Achievement | 0.79-0.92 | NA | Satisfactory psychometric properties Domain specifically relevant for the adolescent population |
Child Health Questionnaire (CHQ-PF50) [21] | CR: 11–18 PR: 11–18 | 50 items | Physical functioning, Limitations in schoolwork and activities with friends General health Bodily pain Discomfort Limitations in family activities Emotional/time impact on the parent Impact of emotional or behavior problems on schoolwork and other daily activities Self-esteem Mental health Behavior Family cohesion Change in health | 0.75-0.90 | 0.70-0.93 | Child and parent-proxy versions Available in different languages Normative samples available in several countries |
TNO-AZL Children’s Quality of Life questionnaire (TACQoL) [22] | CR: 6–11 PR: 6–15 | 42 items | Pain and symptoms Motor function Autonomy Cognitive and social function Positive and negative emotions | 0.59-0.86 | 0.71-0.89 | User friendly, satisfactory reliability of the parent reports |
Disease-specific measures of quality of life | ||||||
Pediatric Quality of Life Inventory-End Stage Renal Disease (PedsQL ESRD module) [12] | CR: 5–18 PR: 2–18 | 34 items | General fatigue about my kidney disease Treatment problem Family and peer Interaction Worry Perceived physical appearance Communication | Not reported | Not reported | Includes specific ESRD or ESRD treatment-related issues Child and parent-proxy versions available |
Qualitative methods (e.g., in-depth interviews) | NA | NA | NA | NA | NA | Elicits in-depth insights about the impact of the disease and treatment from the patients perspective |
HRQoL in children with ESRD
Important determinants of HRQoL and proposed interventions
Medical factors
Determinants | Association with HRQoL | Proposed interventions |
---|---|---|
Medical factors | ||
Being on dialysis (independent of dialysis modality) | Patients on dialysis reported worse HRQoL scores compared with patients with a functioning transplant. No difference was found between patients on hemodialysis and on peritoneal dialysis | The possibilities of home HD and nocturnal hospital HD should be actively explored |
Cosmetic side effects of immunosuppressive therapy | Weight gain, gingiva hypertrophy, acne, and cushingoid appearance are important but underestimated problems in patients with a functioning renal transplant | Managing changes in appearance by learning cosmetic application techniques and combating weight gain through physical exercise are warranted |
Stunted height | Shorter patients reported lower self-esteem and satisfaction with health. In addition, height gain and growth hormone use were associated with increases in physical and social functioning by parent-proxy report | Interventions proven to be effective in preventing growth retardation include recombinant growth hormone therapy and steroid-free immunosuppressive regimens |
Anemia | Parents of anemic children reported worse HRQoL for their children and patients reported lower physical functioning | Correction of anemia by administration of erythropoietin and iron preparations may significantly improve long-term health outcomes and corresponding HRQoL. |
Sociodemographic factors | ||
Gender | Female patients indicated they struggled more emotionally (regardless of length of time on dialysis) and had more concerns about appearance being negatively affected by their disease | Pediatric ESRD programs should direct more psychosocial resources and interventions for those particular vulnerable groups of patients and families that may benefit from greater attention |
Ethnic background Parental level of education Nonintact household | Children of non-Western origin were at risk for impaired HRQoL on emotional and school functioning Low parental level of education may result in decreased HRQoL in their children Both patients and parents of nonintact households reported lower emotional HRQoL than samples from married households | |
Psychosocial factors | ||
Coping strategies Contact with fellow patients | Obtaining knowledge, achieving a sense of normality, autonomy, and empowerment in treatment are important themes for finding ways to incorporate the disease into daily life Contact with fellow patients is important to allow children to share their feelings, coping strategies, and personal questions | Health care providers should acknowledge the specific information needs of particular adolescent patients with ESRD An interdisciplinary and coordinated plan of care that includes self-management strategies, psychosocial programs, and peer sessions facilitated by a social worker or psychologists is called for Self-management, information provision, and contact with fellow patients could possibly be delivered through innovative online initiatives |