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.

Psychometric properties of the quality of life questionnaire for children with CP

This paper describes the development and psychometric properties of a condition-specific quality of life instrument for children with cerebral palsy (CP QOL-Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL-Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self-report. For primary caregivers, 2-week test-retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL-Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self-report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php.

Regional variations in walking for different purposes : the south east Queensland quality of life study

Where people are located can influence behavioral choices and health outcomes through the effects of place on health. Walking is the most commonly reported form of nonoccupational and nonhousehold physical activity for adults. It is a behavior of particular interest to those in the transportation, urban planning, and public health fields. Researchers have examined patterns of walking from both an individual perspective (psychological and social factors) and from a broader community focus (location and built environment factors). The majority of studies have examined walking in the context of urban environments. Variations within regions (urban, periurban, and rural, for example) in walking have not been previously described. We use data from a regionally based quality of life survey to examine subregional variations in walking for particular purposes. Both the social and contextual variations that may underlie these differences are considered. This is useful in helping identify particular factors that may be further investigated in disaggregated analyses using GIS methods to identify specific differences in objective attributes between subregions that may influence peoples' choices to walk, such as walking infrastructure and the availability of destinations.

The impact of the financial costs of multiple sclerosis on quality of life

This study examined the financial costs of multiple sclerosis (MS) and the impact of financial strain on the subjective quality of life of people with MS and their families. Due to the lack of research in this area, a qualitative research design was employed. Interviews were conducted with 16 health professionals, 26 people with MS, and 11 family members of people who had MS. Adjusting to actual or threatened loss of income caused financial stress. These financial struggles led to a lower quality of life among respondents. Problem solving, coping, and positive reappraisal helped people to adjust to financial changes. Professionals focused on increased funding for services, whereas people with MS focused on improved income support. These findings highlight the need for professionals to consider the financial strain associated with this disease and the impact of this strain on the quality of life of individuals with MS and their families.

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.

A Rasch anaylsis of a self-perceived change in quality of life scale in patients with mild stroke

A Rasch analysis was used to assess the unidimensionality and appropriateness of the scoring level of a 13-item self-perceived change in quality of life scale (CQOL) for stroke patients. A total of 158 patients with mild stroke completed the CQOL themselves at home. The results showed that a unidimensional CQOL can be created by deleting the three items related to speaking, vision, and thinking. The 4 scoring categories of the shortened scale were deemed appropriate from the analysis. These results provide preliminary evidence of the 10-item CQOL in assessing self-perceived change in quality of life in stroke patients. Further studies are needed to examine the test-retest reliability, criterion validity, and responsiveness of the 10-item CQOL in stroke patients.

Self-perceived quality of life for adolescents with physical disabilities - a preliminary study

The purpose of this study was to explore the effect of physical disabilities (PD) on the quality of life (QoL) of adolescents aged from 10 to 18 years. Sixty-three adolescents with PD (aged 14.9 ± 2.4 years) from primary (5th grade or above) to high schools in Kaohsiung City volunteered to participate in this research; 282 children without disability (aged 13.8 ± 2.3 years) attending schools in the same geographical region were recruited as controls. The Student Version of the Comprehensive Quality of Life Scale was used in this study. This is a multidimensional self-report, global measure of subjective and objective QoL. Multivariate analysis of variance revealed that the two groups were significantly different in objective QoL (F = 11.53, p < 0.001). Material wellbeing was substantially lower in the PD group when compared to the control group. In contrast, domains such as productivity, safety, and emotion were higher in the PD group. Among the subjective scales, the PD group showed higher productivity and better emotion when compared to the control group. No significant correlation was observed between objective and subjective overall QoL scores (r = 0.20, p = 0.12) in the PD group. These findings showed that subjects with PD in regular schools demonstrated different patterns in objective and subjective QoL when compared to those without PD. Both subjective and objective domains are important when measuring QoL of adolescents with PD.

Defining quality of life for Chinese elderly stroke survivors

Purpose: This study aimed to identify the constituents and conceptual characteristics of the quality of life (QOL) of Chinese elderly stroke survivors, living in the community in Hong Kong.

Method: A triangulated approach was used to identify the QOL components for this population. This process involved a comparison of QOL components gathered from three different methods, namely, focus group interviews, review of the literature and the contents of the generic Hong Kong Chinese version of the World Health Organization Quality of Life Scale (CWHOQOL-HK). Five health professionals were involved in the comparison process. A percentage of inter-judge agreement was used to determine the reliability of the comparisons made between the judges.

Results: This study identified 36 components considered to contribute to the QOL of Chinese elderly stroke survivors in Hong Kong. The conceptual characteristics of their QOL generally concurred with those identified in the literature.

Conclusion: Both similarities and differences were found in the QOL components identified in this study when compared to those identified in studies of Western populations who are elderly and had a stroke. The contents of the CWHOQOL-HK scale were found to lack adequacy in representing the QOL of Chinese elderly stroke survivors in Hong Kong. Recommendations are given, based on the findings of this study, to overcome this limitation for its application as a QOL measure for this population.

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.