Parents' perception of the quality of life of preschool children at risk or having developmental disabilities.

Despite increased concern for the health related quality of life (HRQOL) of people with disabilities, little is known about the HRQOL of children with developmental disabilities. The present study aimed to explore the HRQOL of children who were at risk or having developmental disabilities in Hong Kong. Using the parent-reported Chinese Pediatric Quality of Life Inventory (PedsQL), the HRQOL of 173 children (2–4 years) with signs of delays in development was contrasted with that of 132 children with typical development. We found that those who exhibited high risk of developing a developmental disability had significantly lower overall well-being (76.3 ± 13.7 vs. 84.2 ± 11.3; p<0.001) and psychosocial health (71.3 ± 15.6 vs. 82.5 ± 12.9; p<0.001) but not necessarily physical health. The findings are consistent with previous findings in children with different disabilities and chronic illnesses. They suggest children at risk or having DDs need help in restoring their quality of life up to the standard experienced by their healthy peers, particular in psychosocial aspects such as social functioning, emotion functioning, and school functioning.

Preliminary validation of the Chinese version of the pediatric quality of life inventory

The Pediatric Quality of Life Inventory (PedsQL) is a scale for assessing health-related quality of life of children and adolescents aged 2-18 years. Three reports of PedsQL for the age ranges 2-4 years and 5-7 years were translated into Chinese and their validities were examined. A total of 186 children and parents were involved in the study. Content validity, test-retest reliability, internal consistency reliability and construct validity were assessed. The correlation of parents' and children's reports was also examined. The results showed that the internal consistency is generally good, test-retest reliability ranged from moderate to good, differences between disabled and non-disabled individuals are significant in total scores and in all subscales except for the physical functioning subscale for the children's self-report for the age ranges of 2-4 years and 5-7 years and the correlation between the reports of the parents and children for the age range of 5-7 years is moderate to high. This suggests that the newly translated Chinese PedsQL for children aged 2-4 years and 5-7 years seems to be reliable and valid to be used as a measure of health-related quality of life in Chinese pediatric research and clinical applications.

From music to silence: an exploration of music-thanatology vigils at end of life

Research in Australia into use of music-thanatology, evaluating provision of harp music in vigils with palliative care patients in a hospice. The concept of music-thanatology is outlined, and the findings of the study in alleviating suffering and creating tranquil environments are reported.

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.

Roman concept of mental capacity to make end-of-life decisions

When assessing decisional competence of patients, psychiatrists have to balance the patients' right to personal autonomy, their condition and wishes against principles of medical ethics and professional discretion. This article explores the age-old legal and ethical dilemmas posed by refusal of vital medical treatment by patients and their mental capacity to make end-of-life decisions against the background of philosophical, legal and medical approaches to these issues in the time of the Younger Pliny (c62–c113 CE). Classical Roman discourse regarding mental competency and "voluntary death" formed an important theme of the vast corpus of Greco-Roman writings, which was moulded not only by legal permissibility of suicide but also by philosophical (in modern terms, moral or ethical) considerations. Indeed, the legal and ethical issues of evaluating the acceptability of end of life decisions discussed in the Letters are as pertinent today as they were 2000 years ago. We may gain valuable insights about our own methodologies and frames of reference in this area of the law and psychiatry by examining Classical Roman approaches to evaluating acceptability of death-choices as described in Pliny's Letters and the writings of some of his peers.

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.

Differential convergence of life-cycle inventories toward upstream production layers

We present an input-output analysis of the life-cycle labor, land, and greenhouse gas (GHG) requirements of alternative options for three case studies: investing money in a new vehicle versus in repairs of an existing vehicle (labor), passenger transport modes for a trip between Sydney and Melbourne (land use), and renewable electricity generation (GHG emissions). These case studies were chosen to demonstrate the possibility of rank crossovers in life-cycle inventory (LCI) results as system boundaries are expanded and upstream production inputs are taken into account. They demonstrate that differential convergence can cause crossovers in the ranking of inventories for alternative functional units occurring at second-and higher-order upstream production layers.

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.