Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong

Although illnesses and diseases are thought to adversely affect quality of life (QoL), whether children who have physical disabilities (PD) from a young age adapt to the effect of developmental disabilities has rarely been investigated. This study attempted to assess the subjective wellbeing, and examine the correlation between objective and subjective QoL, of children with PD. Using a self-reported non-disease-specific questionnaire, the QoL of 72 young persons (13.5 ± 2.0 years) with PD was contrasted with those who do not have disabilities (n = 510; age-matched). MANOVA analyses revealed that the PD group had lower objective QoL score (63.0 ± 7.4 vs. 66.8 ± 5.7, p < 0.001) but the two groups were not significantly different in subjective QoL score (70.9 ± 11.4 vs. 69.6 ± 13.6, p = 0.466). No correlation was found between objective and subjective QoL in the PD group (r ranged from 0.06 to 0.19), while weak to medium correlations (r ranged from 0.03 to 0.41) were observed for the controls. The apparent detachment of subjective feeling and objective circumstances in the PD group may reflect adjustment to developmental disabilities.

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.

Quality of life indexes for national policy: review and agenda for research

A number of governments and public policy institutes have developed ldquoQuality of Life Indexesrdquo – statistics that attempt to measure the quality of life for entire states or regions. We develop 14 criteria for determining the validity and usefulness of such QOL indexes to public policy. We then review 22 of the most-used QOL indexes from around the world. We conclude that many of the indexes are successful in that they are reliable, have established time series measures, and can be disaggregated to study subpopulations. However, many fall short in four areas: (1) indexes vary greatly in their coverage and definitions of domains of QOL, (2) none of the indexes distinguish among the concepts of input, throughput, and output that are used by public policy analysts, (3) they fail to show how QOL outputs are sensitive to public policy inputs, and (4) none have examined convergent validity against each other. We conclude that many of these indexes are potentially very useful for public policy and recommend research to further improve them.

Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Regional and urban Victorian diabetic youth: clinical and quality-of-life outcomes

Objectives: To compare groups of urban and regional Victorian diabetic children and assess their quality of life, diabetes knowledge, access to services and metabolic control.

Methods: Forty-seven children from three regional Victorian communities (Horsham, Warrnambool and Sale; n = 16, 18 and 13, respectively) were compared with 120 age-, sex- and duration of diabetes-matched children attending the Royal Children's Hospital (RCH) diabetes clinic in Melbourne. Quality of life, diabetes knowledge, use of services, and metabolic control were assessed using the child health questionnaire (CHQ PF-50/CF-80); a diabetes-knowledge questionnaire; access to a diabetes nurse educator (DNE), dietitian and complication screening; and indices of mean HbA1C (values are taken every 3 months in the 'yearly HbA1C'), respectively.

Results: Comparisons of CHQ data showed that regional diabetic youth scored significantly lower on most subscales. The greatest deficits were seen in areas of mental health, self-esteem, parent impact (emotional) and family cohesion. Diabetes knowledge and median yearly HbA1C for patients were not significantly different between the regional and urban centres (8.1%, 8.9%, 8.4% and 8.6% at RCH, Horsham, Warrnambool and Sale, respectively). Patients in regional centres had reportedly less access to team-based diabetes care.

Conclusions: Regional youth in Victoria, with similar levels of metabolic control and diabetes knowledge as their urban counterparts, have a markedly lower quality of life, implying a negative synergy between diabetes and the demands of regional lifestyles.

Validity of the assessment of quality of life (AQoL) utility instrument in patients with operable and inoperable lung cancer

There have been few longitudinal studies of quality of life in patients with all stages of lung cancer, particularly those that have included measures of utility. The purpose of this study was to examine the psychometric properties of the Assessment of Quality of Life instrument (AQoL) in patients with lung cancer. The AQoL is a health-related quality of life questionnaire and provides a descriptive system for a multi-attribute utility instrument (MAU), so that scores can be used in cost-utility evaluations. In the present study the reliability (internal consistency) of the AQoL was examined and the concurrent validity was assessed using the Medical Outcomes 36-item Short Form Health Survey (SF-36) as the comparator instrument. The sensitivity to different health states of the AQoL and the responsiveness to change over time was also examined. A prospective, non-experimental cohort study was undertaken. Ninety-two participants with all stages of lung cancer were recruited from a tertiary multi-disciplinary lung cancer clinic. Ninety participants had non-small cell lung cancer (NSCLC) and two had limited stage small cell lung cancer. The AQOL and SF-36 surveys were administered concurrently at baseline. In patients with NSCLC the surveys were then repeated 3 and 6 months later. Correlations between the baseline AQoL summary scales and SF-36 summary scales support the divergent and convergent validity of the AQoL. Reliability was also found to be sufficient (Cronbach's Alpha = 0.76). In addition, in patients with inoperable NSCLC, baseline AQoL scores were found to be predictive of survival at 6 months in Cox proportional hazards multivariate analysis. However, the physical components summary score of the SF-36 was more sensitive to differences in health states between patients with different stages of NSCLC at 6 months of follow-up and more responsive to change over time in both operable and inoperable patients with NSCLC than the AQoL. The findings support the construct validity and reliability of the AQoL in this population. However, there remains some uncertainty about whether the AQoL has sufficient sensitivity to different health states in this population. Further studies using other MAU instruments may determine whether alternative instruments are more sensitive to different health states in individuals with lung cancer.

Quality-of-life measurement in patients undergoing radiation therapy for head and neck cancer: a Hong Kong experience

The aims of this study are (1) to establish a reliable and valid quality-of-life (QOL) questionnaire for Chinese patients with head and neck (H&N) cancer who are treated with radiation therapy and (2) to evaluate the impact of the immediate side effects of treatment on the QOL of these patients. The 39-item "Quality of Life Radiation Therapy Instrument with Head and Neck Companion Module" (QOL-RTI/H&N) was translated into Chinese. In the reliability evaluation phase (study module 1), the questionnaire was administered twice to 56 H&N cancer patients, 7 days apart, during the second and third week of radiation therapy. In the validity evaluation phase (study module 2), 138 patients completed the QOL-RTI/H&N before starting and at the end of radiation therapy. Sixty-nine of these 138 patients also completed the QOL-RTI/H&N during the second week of their radiation therapy, at the same time as completing the Functional Assessment of Cancer Therapy-Head and Neck (FACT-H&N) questionnaire. Cronbach alpha coefficients were 0.88 for the general-tool QOL-RTI and 0.90 for the H&N subscale. Test-retest reliability was satisfactory with intraclass correlation coefficients of 0.89 for the general-tool QOL-RTI and 0.75 for the H&N subscale. The instrument can discriminate between patients with stage I or II disease and those with stage III or IV disease (P < .05). Concurrent validity was established by the good agreement with the FACT-H&N (r = 0.86, P < .001). A highly significant deterioration was in the QOL from the baseline to the end of treatment (mean difference for general tool = 1.95, P < .001; mean difference for H&N subscale = 4.85, P < .001). The Chinese QOL-RTI/H&N is a reliable and valid tool for determining the QOL in H&N cancer patients receiving radiation therapy. The immediate side effects of treatment had a significantly negative impact on the patients' QOL. The impact was relatively large for the functional and treatment-site aspects.

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.

Evaluating quality of life in hip and knee replacement: psychometric properties of the World Health Organization Quality of Life short version instrument

Objective: To evaluate the psychometric properties of the World Health Organization Quality of Life short version instrument (WHOQOL-BREF), and to determine its responsiveness in assessing early outcome after total hip or knee replacement surgery.

Methods: At baseline (entry to an orthopedic waiting list), 279 participants completed the WHOQOL-BREF instrument, Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC), Assessment of Quality of Life (AQOL) instrument, Kessler Psychological Distress (K10) scale, and the modified Health Assessment Questionnaire (MHAQ). A total of 74 patients completed reassessments 3 months after surgery.

Results: The WHOQOL-BREF demonstrated acceptable internal consistency for all domains (Cronbach's = 0.76-0.84) and moderate concurrent validity for the physical and psychological domains (r = 0.67 for physical versus AQOL; r = -0.71 for psychological versus K10). Minimal ceiling or floor effects were identified at baseline or 3 months, except for the social relationships domain. The disease-specific WOMAC subscales were most responsive to change (relative efficiency [RE] 0.66-1.00). Apart from social relationships, all WHOQOL-BREF scores improved significantly after surgery. The physical domain was more responsive than the AQOL (RE 0.50 versus 0.42) and was similar to the MHAQ (RE 0.55 for MHAQ). The responsiveness of the psychological domain was similar to that of the K10 scale (RE 0.11 versus 0.08).

Conclusion: The WHOQOL-BREF has good psychometric properties for use in persons with severe joint disease, and by providing complementary information, it offers clinicians and researchers an additional tool for comprehensively assessing quality of life in this patient group.