Self-related quality of life scales for people with an intellectual disability : a reply to Ager & Hutton

An earlier publication by the present author concerning quality of life (QoL) measurement has been critiqued by A. Ager and C. Hatton. The present paper addresses the issues raised. It commences with a reappraisal of the Life Experiences Checklist and confirms the present author's view that this instrument is not adequate to measure QoL in accordance with contemporary understanding of the construct. It is argued that QoL scales should include both objective and subjective measurements across a minimum set of domains adequate to embrace the whole life experience. Finally, the usefulness of QoL measurement for people with intellectual disability is debated.

Improving the quality of life for patients' with co-morbidities requiring acute care

Reduced mortality rates in the Western world have created an increase in people with co-morbidities who have the potential to require acute care hospital services. These patients' chronic conditions often require complex needs that may not always be met by an acute care focus. This has created a precedent for nurses concerned with the holistic care and quality of life for these patients. This paper aims to describe the experiences of patients with co-morbidities who were admitted to hospital with an acute illness. This exploratory descriptive design selected patients in acute care who had more than one co-morbidity for approximately five years. Data was obtained from a purposive sample of twelve patients within two weeks of being discharged home using a semi-structured interview approach. Data analysis was conducted utilising Nvivo software to process the Colaizzi [1978] method. The theme clusters revealed a lack of continuity and co-ordinated care of the patients' co-morbidities during the acute admission and in discharge planning. It was seen that combinations of chronic conditions and treatments affected these patients' experience of acute care and thereafter, where conceptualisations of co-morbidity failed to accurately capture the underlying health care needs of these patients. These findings have implications for a comprehensive and considered approach to these patients' health care needs and quality of life whilst developing an improved understanding of co-morbidity for nursing. Recommendations for further research conclude this paper.

Quality of life amongst people over 65 years of age : does constipation make a difference?

Aims
The aims of this study was to determine whether quality of life for people 65 years and over is affected by constipation and laxative use and to identify dimensions or functions of quality of life that were specifically affected by constipation.

Method
Of the 79 subjects who completed the pre-screening questionnaire to determine their bowel function and laxative use status , 58 agreed to participate in the phase of the study (73%) of which 22 were females and 36 were males. Subjects completed a quality of life questionnaire, comprising of ComQoL questions and SF36 questions during a face to face interview conducted in their own homes.

Results
ComQoL importance and satisfaction scores were compared by bowel health status and gender. The most important dimensions for all subjects were health (mean score 9.4), family (mean score 9.3) and their own happiness (mean score 8.7). The total mean for satisfaction score for the whole group was 69%, fractionally lower that the bottom end of the normative range (70-80%). Constipated subjects scored satisfaction with their health significantly lower than the not constipated group (p =0.02) and subjects who took laxatives once a fortnight or more also had significantly lower satisfaction with their health (p=0.03).

Conclusion
Overall the subjects reported a high level of satisfaction with their lives, constipation and laxative use affected their satisfaction with their health. Further exploration is needed to determine how this will affect lifestyle and health behaviours.

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.

Quality of life of Australian family carers : implications for research, policy and practice

Abstract As part of an international,multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean
age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.

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.

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.