Moving from the quality of life concept to a theory

BACKGROUND: The Special Interest Quality of Life Group has updated its set of statements defining the quality of life (QOL) construct to reflect emerging areas of agreement and the framework for understanding better the QOL construct.
METHOD: This article examines the major areas currently under discussion involving the objective-subjective dichotomy, needs, and core domains.
RESULTS: It is concluded that while the new statements constitute a significant advance, further progress requires testable theory. In order to facilitate such future research, a conceptual model is proposed that distinguishes causal and indicator variables within the framework of a homeostatic management system.
CONCLUSION: Several lines of empirical investigation are suggested to test this and similar theoretical models with a view to taking our conceptualization of QOL to the next level.

The effects of economic disadvantage on psychological well-being and quality of life among people with multiple sclerosis

This study investigated the impact of economic disadvantage among people with multiple sclerosis (MS) on their psychological well-being and quality of life. Participants were 113 people with MS (31 males, 82 females). Information was obtained on income, lost income, costs of MS, economic pressure, coping, psychological well-being and quality of life. Economic pressure, and not actual MS-related costs predicted psychological well-being. Costs, economic pressure and coping predicted quality of life. These results demonstrate that pressure due to changed economic circumstances, as well as coping with these pressures is important in the quality of life of people with MS.

Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children

Background: Although there is increasing recognition that quality of life (QOL) and health-related quality of life (HRQOL) are important outcome variables in clinical trials for children with cerebral palsy, there are substantial limitations in existing measures of QOL. This study identify themes of QOL for children with cerebral palsy and their parents to guide the development of a new condition-specific QOL scale. Methods: A qualitative study of parent and child views on QOL composition was conducted, using a grounded theory framework. Families participated in semistructured interviews on QOL until thematic saturation was reached (n = 28 families). Results: Overall, 13 themes emerged from the interviews: physical health, body pain and discomfort, daily living tasks, participation in regular physical and social activities, emotional well-being and self-esteem, interaction with the community, communication, family health, supportive physical environment, future QOL, provision of, and access to services, financial stability, and social well-being. Conclusions: Research with parents and children with cerebral palsy, representative of severity across the disease spectrum and socio-economic status, reinforced and expanded on the traditional themes that have underpinned QOL measurement development. This has implications not only for the development of a new QOL scale for children with cerebral palsy, but also for clinical interventions and community care management.

Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes

With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.

A longitudinal study of coping strategies and quality of life among people with multiple sclerosis

The current study was designed to examine the role of coping strategies on quality of life (QOL) of people with multiple sclerosis (MS) over a period of 12 months. Respondents were 321 people with MS and 239 people from the general population who completed measures of QOL on two occasions, 12 months apart. People with MS also completed measures of how they coped with their illness. The results demonstrated that people with MS experienced lower levels of QOL at both points in time. For people with MS, QOL domains strongly predicted other QOL domains at both time 1 and time 2. The coping strategies of social support, focusing on the positive and wishful thinking were consistent predictors of physical QOL, psychological QOL, social QOL and environmental QOL. These findings indicate that coping strategies play an important role in predicting the QOL of people with MS.
Keywords Coping - Multiple sclerosis - Quality

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.

The relationship between quality of life and perceived body weight an dieting history in Dutch men and women

OBJECTIVES: (1) To study the relationship between quality of life (QoL) and measured and perceived weight and dieting history in Dutch men and women; (2) to assess the effect of weight loss over a 5 y period on QoL.

DESIGN: A cross-sectional study, in a sub-sample longitudinal over 5 y.

SUBJECTS: A total of 2155 men and 2446 women, aged 20-59 and recruited from the general population from three towns in The Netherlands.

MEASUREMENTS: Body weight, height, self-administered questionnaire including questions concerning demographic variables and weight loss practices as part of the Dutch Monitoring project on Risk Factors for Chronic Disease (MORGEN). The Rand-36 questionnaire was used as the QoL measure.

RESULTS: In men, measured overweight (body mass index, BMI>25 kg=m2) was not associated with any dimension of QoL after adjustment for age, educational level and perceived overweight. Perceived overweight was related to reduced scores for general health and vitality. This relationship was independent of measured obesity. A history of repeated weight loss was associated with reduced scores for role functioning due to both physical and emotional problems. In women, measured overweight was significantly associated with lower scores for five out of eight QoL dimensions and perceived overweight with three: general health, vitality and physical functioning. A history of frequent weight loss was related to significantly reduced scores in six dimensions. However, only with history of frequent weight loss, and uniquely in women, was there a significant reduction in
scores on mental health and limited emotional role functioning. Measured and perceived overweight and frequent weight loss were all related to reduced scores for physical functioning. Longitudinal data indicate that in older women weight gain of 10% body weight or more was associated with a significant deterioration in QoL.

CONCLUSIONS: When looking at measures of QoL in relation to overweight it is important to separate the effects of perception of weight status and history of weight loss. We observed that the latter two factors were associated with reduced scores on several dimensions of QoL, particularly in women. These associations were observed to be independent of body weight. International Journal of Obesity (2001) 25, 1386 – 1392

The impact of social phobia on quality of life: the advantages of anxiety support groups

Social phobia is the least well known of the anxiety disorders and it is perhaps also the least well understood. The lifetime prevalence rates for social phobia, which range from 3% to 13%, clearly indicate that social phobia is a widespread mental health problem. Those affected by social phobia often live their lives around the limitations of the disorder including avoidance of social situations, depression and loneliness. Thus for these individuals, social phobia becomes an impairing disorder which can have long-term negative impacts on work performance and social relationships. Anxiety support groups offer an important resource to sufferers of social phobia. Support groups provide a potentially safe and confidential environment in which to interact with others. Support groups also have the potential to help to de-stigmatize the disorders for sufferers as all members share similar concerns that are often not well understood by others. The practical benefits to be derived from anxiety support groups are presented through the discussion of two case studies.

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.

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.

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.