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.

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.

Quality of life related to oral versus subcutaneous iron chelation: a time trade-off study

Objective: To investigate the utility associated with subcutaneous infusion (deferoxamine) compared with once-daily oral administration (deferasirox) of iron chelation therapy.

Methods: Interviews using the time trade-off technique were used to estimate preferences (utility) for health states by finding the point at which respondents were indifferent between a longer but lower quality of life (QoL) and a shorter time in full health. Participants (n = 110) were community-based, 51% women, median age 35 years, from four regions in Sydney, Australia. Respondents rated three health states involving equal outcomes for people with thalassemia but with different treatment modalities for iron chelation; an "anchor state" describing a patient receiving iron chelation without administration mode specified, anchor state plus iron chelation via subcutaneous infusion, and anchor state plus iron chelation through once-daily oral medication.

Results: On an interval scale between 0 (death) and 1 (full health), median (interquartile range) utility of 0.80 (0.65–0.95) for the anchor state, 0.66 (0.45–0.87) for subcutaneous infusion, and 0.93 (0.80–0.97) for once-daily oral administration was obtained. The mean (median) difference of 0.23 (0.27) between the two treatments was statistically significant (Wilcoxon-signed rank test, P < 0.001). Subcutaneous infusion was associated with a mean (median) utility 0.13 (0.14) lower than the anchor state (P < 0.001), and once-daily oral treatment had a utility 0.10 (0.13) higher (P < 0.001).

Conclusion: Community respondents associate oral administration of an iron chelator such as deferasirox with enhanced QoL compared with subcutaneous treatment. Assuming equal safety and efficacy, QoL gains from once-daily oral treatment compared with subcutaneous infusion are significant.

Symptoms, ill-health and quality of life of the members of a Porton Down veterans' support group

Background There has been a Human Volunteer Programme at the British chemical weapons research facility at Porton Down since the First World War, in which some of the participants were exposed to chemical warfare agents.

Aim To identify any striking specific morbidity patterns in members of the Porton Down Veterans Support Group (PDVSG).

Methods A self-completed postal questionnaire was prepared including health immediately after the visits to Porton Down, subsequent diagnoses and hospital admissions, symptoms in, and after, the first 5 years after the visits, fatigue symptoms and current quality of life, measured using the SF-36.

Results Responses were received from 289 of 436 (66%). Results reported here relate to 269 male respondents of mean age 66.8 years. Sixty-six per cent reported their first visit to Porton Down in the 1950s. The most common diagnoses or hospital admissions reported were diseases of the circulatory system. In the first 5 years after their visits the most common symptoms were headache, irritability or outbursts of anger and feeling un-refreshed after sleep. In the later period, most common symptoms were fatigue, feeling un-refreshed after sleep and sleeping difficulties. Sixty-five per cent met the definition for a case of ‘fatigue’. Current quality of life dimensions were consistently lower than age-specific estimates from general population samples.

Conclusions Members of the PDVSG responding to this survey reported poorer quality of life than the general population. Despite there being no clear pattern of specific morbidities, we cannot rule out ill-health being potentially associated with past experience at Porton Down

The impact of caring for a child with cerebral palsy : quality of life for mothers and fathers

Background:  Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3–18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence.

Method: A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3–7 years (n = 15), 8–12 years (n = 10) and 13–18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL.

Results: There were no differences in parental QOL among subgroups (i.e. mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access.

Conclusions: Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.

Severely compromised quality of life in women and those of lower socioeconomic status waiting for joint replacement surgery

Objective
To determine health-related quality of life (HRQOL), psychological distress, physical function, and self efficacy in persons waiting for lower-limb joint replacement surgery.

Methods
A total of 214 patients on a waiting list for unilateral primary total knee or hip replacement at a large Australian public teaching hospital completed questionnaires after entry to the list. HRQOL and psychological distress were compared with available population norms.

Results
Average HRQOL was extremely poor (mean ± SD 0.39 ± 0.24) and much lower (>2 SD) than the population norm. Near death-equivalent HRQOL or worse than death-equivalent HRQOL were reported by 15% of participants. High or very high psychological distress was up to 5 times more prevalent in the waiting list sample (relative risk 5.4 for participants ages 75 years and older; 95% confidence interval 3.3, 9.0). Women had significantly lower HRQOL, self efficacy, and physical function scores than men. After adjusting for age and sex, significant socioeconomic disparities were also found. Participants who received the lowest income had the poorest HRQOL; those with the least education or the lowest income had the highest psychological distress. Low self efficacy was moderately associated with poor HRQOL (r = 0.49, P < 0.001) and more strongly associated with high psychological distress (r = -0.55, P < 0.001).

Conclusion
Patients waiting for joint replacement have very poor HRQOL and high psychological distress, especially women and those from lower socioeconomic backgrounds. Lengthy waiting lists mean patients can experience extended and potentially avoidable morbidity. Interventions to address psychological distress and self efficacy could reduce this burden and should target women and lower socioeconomic groups.

Quality of life and depression among older patients waiting for joint replacement surgery

Purpose: Older patients waiting for joint replacement surgery in many western countries experience lengthy waits for their surgery. Although these patients suffer with mobility problems the nature of the disability associated with waiting for surgery is unclear. The purpose of this study was to determine health-related quality of life and symptoms of depression in persons waiting for their initial orthopaedic consultation following referral for total knee or total hip replacement surgery.

Methods: All patients who were waiting for an initial orthopaedic consultation for lower-limb joint replacement as at 25 August 2005 were surveyed. Participants were mailed questionnaires concerning demographic information, medical history, health-related quality of life (the Assessment of Quality of Life (AQoL) instrument), and symptoms of depression (Center for Epidemiologic Studies – Depression (CES-D) Scale).

Results: The 84 respondents (response rate 64%) had a mean age of 68.3 (SD 11.5 years), and 60% or respondents were women. Respondents reported an average of 1.6 (SD 0.9) medical conditions, and 85% reported osteoarthritis.} The average health-related quality of life was low (mean AQoL 0.38; SD 0.27), and near death-equivalent or worse than death-equivalent health-related quality of life (AQoL<0.1 of a maximum possible 1.0) was reported by 23% of the participants.The mean depression scale score was 16.5 (SD 11.1), and symptoms of depression (CES-D>16 of a maximum possible 60) were reported by 35% of the sample. There was a strong correlation between health-related quality of life and depression (r=–0.6).

Conclusions: Almost a third of patients waiting to see an orthopaedic surgeon about joint replacement surgery for their hip or knee had symptoms of depression. Geriatric rehabilitation services often provide interventions to these patients. The very poor quality of life reported suggests that more than exercise and strengthening will be needed to reduce disability.

Population norms and meaningful differences for the Assessment of Quality of Life (AQoL) measure

Objective: The Assessment of Quality of Life (AQoL) instrument is widely used in Australian health research. To assist researchers interpret and report their work, this paper reports population and health status norms, general minimal important differences (MIDs) and effect sizes.

Method: Data from the 1998 South Australian Health Omnibus Survey (n=3,010 population-based respondents) were analysed by gender, age group and health status. Data from four other longitudinal studies were analysed to obtain estimated MIDs.

Results: The mean (SD) AQoL utility score was 0.83 (0.20). Gender and age subgroup differences were apparent; the mean scores for women were consistent until their 50s, when scores declined. Greater variability was observed for males whose scores declined more slowly but consistently between 40–80 years. For both genders, those aged 80+ years had the lowest scores When assessed by health status, those reporting excellent health obtained the highest utility scores; progressive declines were observed with decreasing health status. Effect sizes of 0.13 or greater may reflect important differences between groups A difference in AQoL scores of 0.06 utility points over time suggests a general MID.

Conclusions: AQoL population norms, MIDs and effect sizes can be used as reference points for the interpretation of AQoL data. These findings add to the growing evidence that the AQoL is a robust and sensitive measure that has wide applicability.

Implications: The availability of population norms will assist researchers using the AQoL to more easily interpret and report their work.

Measuring quality of life in alcohol and other drug users - the need for improvement

Objective : The use of Quality of Life (QoL) -related measures in Alcohol and Other Drug-related research has increased dramatically over the past decade. However, there remains a great deal of confusion about which type of QoL measure is most valid, what each constrict actually measures and the ethicality of the process of QoL measurement and its subsequent transfer to monetary value. This is particularly important in regard to subsequent resource allocation on the basis of Quality Adjusted Life Years (QALYs). We aim to review the logic of current QoL -related measurement and determine the most conceptually valid way of measuring QoL.

Methods : This review considers some of the broad principles that concern quality of life assessment. These are discussed in relation to health-related quality of life (HRQoL) and the measurement of subjective well-being.

Results : We argue that there are serious logical and methodological issues concerning HRQoL measurement, to the extent that the instruments may not be regarded as valid measures of life quality as this term is generally understood.

Conclusions : It is recommended that HRQoL measurement be abandoned in favour of three separate forms of measurement as medical symptoms, subjective well-being and specific dimensions of psychological ill-being.

The decision to demutualise : an analysis of the pressures for change. The case of life insurers in Australia and South Africa a comparative perspective

Since the 1980s a wave of demutualisations have occurred across a range of industries from stock exchanges to building societies, savings and loans associations and insurers. In both Australia and South Africa this has had a marked effect on the life insurance markets which had been dominated by mutual life insurers for 150 years. This paper adopts a case study approach to analyse the key drivers of organisational change. It examines the experiences of the Australian Mutual Provident (Australia’s oldest and largest life insurance mutual) and Sanlam (the second largest mutual life office in South Africa) as they proceeded down the path to demutualisation. It suggests a complex array of factors combined to place pressure on the existing mutual structures.

The effect of resistance training on functional capacity and quality of life in individuals with high and low number of metabolic risk factors

OBJECTIVE—There are limited data on the effects of resistance training on the capacity to perform activities of daily living (ADLs) and quality of life (QoL) for individuals with a high number of metabolic risk factors (HiMF). In this study, we examined the effect of resistance training on the capacity to perform ADLs and QoL in individuals with HiMF and compared any benefits with individuals with a low number of metabolic risk factors (LoMF).

RESEARCH DESIGN AND METHODS—Fifty-five untrained individuals, aged 50.8 ± 6.5 years, were randomized to four groups: HiMF training (HiMFT), HiMF control, LoMF training (LoMFT), and LoMF control. At baseline and after 10 weeks of resistance training, participants underwent anthropometric measurements and assessments of aerobic power (Vo2peak), muscle strength, capacity to perform ADLs, and a self-perceived QoL questionnaire. A repeated-measures ANOVA was used to examine the effect of training over time among groups.

RESULTS—Training increased lean body mass in both HiMFT (P = 0.03) and LoMFT (P = 0.03) groups. Total fat content and Vo2peak improved in the LoMFT group only. Muscle strength improved in both training groups (P < 0.01). Time to complete ADLs was reduced by 8.8% in the LoMFT group (P < 0.01) and 9.7% in the HiMF group (P < 0.01). Only the HiMFT group reported improvement in QoL.

CONCLUSIONS— Resistance training improved muscle strength and the capacity to perform ADLs in individuals with HiMF and LoMF. Resistance training improved QoL for the HiMF group, and this result was independent of changes in body fat content or aerobic power. Longer training regimens may be needed to improve QoL in individuals with LoMF.

Quality of life in restless legs syndrome: A systematic review of clinical trials and a critical review of instruments

Restless legs syndrome (RLS) is a neurological movement disorder characterized by sensory symptoms and motor disturbances. While the underlying cause remains unknown, it is suggested that 20–25% of people with RLS are affected seriously enough to require pharmacological treatment. Dopamine agonists (DAs) are the most common treatment and act by increasing the low levels of dopamine to which RLS is often attributed. A growing literature highlights the debilitating and distressing nature of this condition from the patient's perspective. While sleep problems are most commonly reported, the impact of RLS on quality of life (QOL) is wide ranging, affecting relationships with partners, sex life, family life, social life, leisure activities, friendships, everyday activities, concentration, travel, career/work, sleep, and health.

We conducted a systematic review of clinical trials in which DAs have been evaluated in terms of RLS-specific QOL, i.e. their impact on the QOL of people with RLS, and critically reviewed the development history and measurement properties of RLS-specific QOL instruments.

A systematic search using terms synonymous with RLS, DAs and QOL was conducted using Scopus software, which includes MEDLINE, PsycINFO, EMBASE, and CINAHL. Our search covered publications from 2000 (prior to which RLS-specific QOL measures did not exist) to August 2009. Trials were included in our review if they evaluated DAs for the treatment of adults with RLS and reported evaluation using an RLS-specific QOL measure. We also ran citation searches to identify papers reporting the development history and measurement properties of the identified RLS-specific QOL instruments.

Three measures of RLS-specific QOL have been developed in recent years and are reviewed here: the Restless Legs Syndrome Quality of Life (RLSQOL) questionnaire, the Restless Legs Syndrome Quality of Life Instrument (RLS-QLI), and the Quality of Life Restless Legs Syndrome (QOL-RLS) measure. Critical review indicates that each has limitations (particularly in terms of published developmental history and content validity). Eleven trials of DAs were identified that included assessment of RLS-specific QOL (nine using the RLSQOL and two using the QOL-RLS). In all studies, significant improvements in RLS-specific QOL were observed, although these were mostly short term (12 weeks) and large placebo effects were also noted.

In people with RLS, the use of DAs has been shown to improve RLS-specific QOL. Longer-term, large-scale studies may be needed to confirm these findings and demonstrate statistically significant improvements in RLS-specific QOL at lower doses. Further development of the RLS-specific QOL measures is needed to ensure that the full impact of RLS (and the full benefit of new treatments) on aspects of life identified as important to individuals is captured in future studies.

The health-related quality of life of overweight and obese adolescents - a study measuring body mass index and adolescent-reported perceptions

Objective. To determine whether the health-related quality of life (HRQOL) of overweight and obese adolescents is significantly lower than that of their healthy weight counterparts, and if so, whether any demographic trends exist and the relative contribution of each HRQOL dimension.

Methods. Cross-sectional analysis of 2,890 students participating in the Pacific Obesity Prevention in Communities Project, Australia. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL) adolescent module. Adolescent height and weight were measured by trained field workers and weight categories assigned according to the International Obesity Task Force BMI cut-off points for adolescents. Multivariate linear regression analyses were undertaken to estimate the mean differences in HRQOL scores between (i) overweight and healthy weight, and (ii) obese and healthy weight adolescents, whilst adjusting for gender, age and socioeconomic status quartile.

Results. The sample had a mean age of 14.6 years (range 11–18), 56.2% boys, 20.2% overweight and 6.3% obese. Higher weight status categories were associated with lower HRQOL scores (mean PedsQL scores: healthy weight: 79.1, overweight: 77.7 and obese: 73.7). Relative to the healthy weight group, and after adjustments, overweight and obese adolescents reported 1.44 (p = 0.005) and 5.55 (p < 0.001) lower HRQOL summary scores, respectively. Overweight adolescents reported significantly lower scores in physical and social functioning, whilst obese adolescents reported significantly lower scores in the same dimensions plus emotional functioning. Girls and younger (< 15 years) adolescents reported greater mean negative HRQOL differences associated with excess weight.

Conclusions. Overweight and obesity in adolescents are associated with significantly lower HRQOL scores.

Utility-based quality of life of overweight and obese adolescents

Objective : To explore the relationship between overweight/obesity and utility in adolescents.

Methods : Data were collected from 2890 adolescents attending 13 secondary schools in the state of Victoria, Australia. The Assessment of Quality of Life 6-Dimension (AQoL-6D) questionnaire was used to measure individual utility. Adolescent's height and weight were measured and weight status categories assigned according to the World Health Organization adolescent growth standards. Multivariate linear regression analyses were undertaken for the whole population and subpopulations of boys and girls to estimate the mean differences in utility scores between 1) overweight and healthy weight and 2) obese and healthy weight adolescents, while controlling for demographic and socioeconomic status variables.

Results : The mean age of adolescents was 14.6 years, 56.2% were boys, 22.2% were overweight, and 9.4% were obese. The mean utility of healthy weight adolescents was 0.860. After adjustments, the overweight and obese groups reported significantly lower mean utility scores (differences: −0.018 and −0.059, respectively, relative to the healthy weight group). This can be interpreted as equivalent to a stated willingness to sacrifice 1.8% and 5.9% of a life in perfect health or 2.3% and 6.8% of a life at healthy weight. A significant utility difference associated with overweight was only experienced by girls (−0.039, P = 0.003). Both sexes experienced significant utility differences associated with obesity, but the magnitude was double for girls (−0.084, P < 0.001) relative to boys (−0.041, P = 0.022).

Conclusion : Utility is lower among overweight and more so among obese adolescents.