Health-related quality of life and metabolic control in children with type 1 diabetes : a prospective cohort study

OBJECTIVE—To assess change in health-related quality of life (HRQOL) in children with diabetes over 2 years and determine its relationship to change in metabolic control.

RESEARCH DESIGN AND METHODS—In 1998, parents of children aged 5–18 years attending a tertiary diabetes clinic reported their child’s HRQOL using the Child Health Questionnaire PF-50. Those aged 12–18 years also self-reported their HRQOL using the analogous Child Health Questionnaire CF-80. HbA_1c levels were recorded. In 2000, identical measures were collected for those who were aged ≤18 years and still attending the clinic.

RESULTS—Of 117 eligible subjects, 83 (71%) participated. Parents reported no significant difference in children’s HRQOL at baseline and follow-up. However, adolescents reported significant improvements on the Family Activities (P < 0.001), Bodily Pain (P = 0.04), and General Health Perceptions (P = 0.001) scales and worsening on the Behavior (P = 0.04) scale. HbA1c at baseline and follow-up were strongly correlated (r = 0.57). HbA_1c increased significantly (mean 7.8% in 1998 vs. 8.5% in 2000; P < 0.001), with lower baseline HbA_1c strongly predicting an increase in HbA_1c over the 2 years (r² = 0.25, P < 0.001). Lower parent-reported Physical Summary and adolescent-reported Physical Functioning scores at baseline also predicted increasing HbA_1c. Poorer parent-reported Psychosocial Summary scores were related to higher HbA_1c at both times but did not predict change in HbA_1c.

CONCLUSIONS—Changes in parent and adolescent reports of HRQOL differ. Better physical functioning may protect against deteriorating HbA_1c, at least in the medium term. While the HRQOL of children with diabetes does not appear to deteriorate over time, we should not be complacent, as it is consistently poorer than that of their healthy peers.

Health-related quality of life of overweight and obese children

Context: The negative effects of childhood overweight and obesity on quality of life (QOL) have been shown in clinical samples but not yet in population-based community samples.

Objective: To determine relationships between weight and health-related QOL reported by parent-proxy and child self-report in a population sample of elementary school children.

Design, Setting, and Participants: Cross-sectional data collected in 2000 within the Health of Young Victorians Study, a longitudinal cohort study commenced in 1997. Individuals were recruited via a random 2-stage sampling design from primary schools in Victoria, Australia. Of the 1943 children in the original cohort, 1569 (80.8%) were resurveyed 3 years later at a mean age of 10.4 years.

Main Outcome Measures: Health-related QOL using the PedsQL 4.0 survey completed by both parent-proxy and by child self-report. Summary scores for children'S total, physical, and psychosocial health and subscale scores for emotional, social, and school functioning were compared by weight category based on International Obesity Task Force cut points.

Results: Of 1456 participants, 1099 (75.5%) children were classified as not overweight; 294 (20.2%) overweight; and 63 (4.3%) obese. Parent-proxy and child self-reported PedsQL scores decreased with increasing child weight. The parent-proxy total PedsQL mean (SD) score for children who were not overweight was 83.1 (12.5); overweight, 80.0 (13.6); and obese, 75.0 (14.5); P < .001. The respective child self-reported total PedsQL mean (SD) scores were 80.5 (12.2), 79.3 (12.8), and 74.0 (14.2); P < .001. At the subscale level, child and parent-proxy reported scores were similar, showing decreases in physical and social functioning for obese children compared with children who were not overweight (all P < .001). Decreases in emotional and school functioning scores by weight category were not significant.

Conclusion: The effects of child overweight and obesity on health-related QOL in this community-based sample were significant but smaller than in a clinical sample using the same measure.

Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance

Background: Although parent-proxy reports of health-related quality of life (HRQOL) are only moderately correlated with child reported HRQOL, it remains unknown why these scores differ. The aim of this study was to use a qualitative methodology to examine why parents and children report different levels of HRQOL.

Method: The sample consisted of 15 parent–child pairs. A think-aloud technique was used where parents and children were given a generic HRQOL instrument (KIDSCREEN) and instructed to share their thoughts with the interviewer. Qualitative analyses were conducted to assess whether parents and children base their answer on different experiences or reasoning, have different response styles, or interpret the items differently.

Results: There was discordance between parents and children, in terms of rating scale and in terms of the reasoning for their answer. Children tended to have different response styles to parents, where for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. Parents and children interpreted the meaning of the items very similarly.

Discussion: This study provides evidence to suggest that discordance among parent-child pairs on KIDSCREEN scores may be as a result of different reasoning and different response styles, rather than interpretation of items. These findings have important implications when parent-proxy reported HRQOL is used to guide clinical/treatment decisions.

Discrepancy between expected and actual child support payments : predicting the health and health-related quality of life of children living in low-income, single-parent families

Objective Although the amount and frequency of child support payments received by single parents are often erratic and fluctuate, no study to date has quantitatively explored how the discrepancy between expected and actual payments relates to child health. This study aims to examine whether the discrepancy between expected and actual child support payments predicts a range of child health outcomes, including global health, health-related quality of life, involvement in activities and parental psychological distress.

Methods This study used results from the Longitudinal Study of Australian Children, which included a sample of parents of children aged 4–5 years (n = 4983). The questionnaire was completed by the parent who spent the most time with the child and knew the child best. From the 4983 families, 332 low-income single parents reliant on welfare with a formal or informal child support order in place were identified.

Results After controlling for income, the discrepancy between expected and actual child support predicted school functioning, conduct problems, total mental health problems and involvement in activities. Discrepancy between expected and actual child support payments did not predict the remaining health-related quality of life domains, mental health domains, global child health or parental psychosocial distress.

Conclusion This was the first study to examine how the discrepancy between expected and actual child support payments relates to child health, providing important data on the effectiveness of the child support system for children's well-being. These findings highlight the potential impact of the discrepancy on school functioning, conduct problems, total mental health problems and involvement in activities.

Can a disease-specific education program augment self-management skills and improve Health-Related Quality of Life in people with hip or knee osteoarthritis?

Background: Patient education and self-management programs are offered in many countries to people with chronic conditions such as osteoarthritis (OA). The most well-known is the disease-specific Stanford Arthritis Self-Management Program (ASMP). While Australian and international clinical guidelines promote the concept of self-management for OA, there is currently little evidence to support the use of the ASMP. Several meta-analyses have reported that arthritis self-management programs had minimal or no effect on reducing pain and disability. However, previous studies have had methodological shortcomings including the use of outcome measures which do not accurately reflect program goals. Additionally, limited cost-effectiveness analyses have been undertaken and the cost-utility of the program has not been explored.

Methods/design: This study is a randomised controlled trial to determine the efficacy (in terms of Health-Related Quality of Life and self-management skills) and cost-utility of a 6-week group-based Stanford ASMP for people with hip or knee OA.

Six hundred participants referred to an orthopaedic surgeon or rheumatologist for hip or knee OA will be recruited from outpatient clinics at 2 public hospitals and community-based private practices within 2 private hospital settings in Victoria, Australia. Participants must be 18 years or over, fluent in English and able to attend ASMP sessions. Exclusion criteria include cognitive dysfunction, previous participation in self-management programs and placement on a waiting list for joint replacement surgery or scheduled joint replacement.

Eligible, consenting participants will be randomised to an intervention group (who receive the ASMP and an arthritis self-management book) or a control group (who receive the book only). Follow-up will be at 6 weeks, 3 months and 12 months using standardised self-report measures. The primary outcome is Health-Related Quality of Life at 12 months, measured using the Assessment of Quality of Life instrument. Secondary outcome measures include the Health Education Impact Questionnaire, Western Ontario and McMaster Universities Osteoarthritis Index (pain subscale and total scores), Kessler Psychological Distress Scale and the Hip and Knee Multi-Attribute Priority Tool. Cost-utility analyses will be undertaken using administrative records and self-report data. A subgroup of 100 participants will undergo qualitative interviews to explore the broader potential impacts of the ASMP.

Discussion: Using an innovative design combining both quantitative and qualitative components, this project will provide high quality data to facilitate evidence-based recommendations regarding the ASMP.

Parsimonious and efficient assessment of health-related quality of life in osteoarthritis research: validation of the Assessment of Quality of Life (AQoL) instrument

Background: The Assessment of Quality of Life (AQoL) utility instrument was psychometrically developed for the general population. This study aimed to explore its potential as an osteoarthritis (OA) outcome measure.

Methods: WOMAC, Lequesne index, SF-36, Visual analogue scales and the AQoL were administered to 222 people with OA. The ability of each questionnaire to detect differences between groups was based on (i) self-rated health (SRH) and, (ii) differences between people on an orthopedic waiting list (WL) vs people with OA in the community (C). Comparisons included effect size, relative efficiency and receiver operator characteristic curves.

Results: All instruments detected differences between groups; however no one instrument exhibited superior efficiency. The AQoL demonstrated strong psychometric properties.

Conclusion: The AQoL has equivalent performance to comparator questionnaires commonly used in OA research and would be a useful adjunct to well-established disease specific scales. The AQoL has important advantages; brevity (12 items), facilitates comparisons between disease groups, and delivers a utility score that can be used in health economic evaluations.