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.

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.

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.

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.

Changes in quality of life and coping among people with multiple sclerosis over a 2 year period

There is a need to investigate the impact of different coping strategies on quality of life (QOL) of people with multiple sclerosis (MS), in order to better inform intervention programs for this population. This study evaluated the relationship between QOL and coping over a 2 year period among people with MS. Participants were 382 people with MS (144 male, 238 females) and 291 people without a neurological or other chronic illness from the general population (101 males, 190 females). People with MS experienced lower QOL than the control group in the domains of global QOL, independence, social and spiritual QOL scales, as well as the problem solving and social/emotional support coping scales. Interestingly, people with MS experienced higher psychological QOL than the general population, and higher detachment and focusing on the positive coping. Over time, people with MS demonstrated increases in their global QOL as well as in their social/emotional support coping. Women demonstrated higher levels than men of global QOL and Social/emotional support coping. The results of these findings have implications for information and intervention programs for people with MS.

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.

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.

Volunteering and quality of life of the older age population

The contribution of volunteers to society and economy is substantial. The participation in voluntary work is on the increase, particularly by the over 55 age group. Given the aging of the Australian population, this growth has an important social consequence. The aim of this conceptual study is to review the influences of older age Australian volunteering practice, its growth pattern and the types of voluntary work undertaken. The study uses the expectancy theory of motivation to argue that volunteers participate for the perceived benefits they get from their interaction with others, by experiencing self-esteem from being useful, being connected, gaining self-satisfaction, and by focusing on giving. It reviews the issue of quality of life (QOL) in relation to voluntary social engagement and suggests that there is an association between the older age group voluntarism and improvement in their QOL. The role of policy makers in further motivating larger participation by the older age groups and the social benefits emerging from this strategy is briefly reviewed.

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.

Functional capacity and quality of life in middle-age men and women with high and low number of metabolic risk factors

It is not clear if men and women with high numbers of risk factors (HiMF) for metabolic syndrome (MetS) have impaired capacities to perform activities of daily living (ADL's) and lower quality of life (QoL) in the absence of symptomatic heart disease. Our results indicate that in women there is a correlation between the number of risk factors and the capacity to perform ADL's and QoL. This was not evident for men. These findings may partly explain why women tend to consult healthcare practitioners earlier in the disease process than men.

Not all roads lead to Rome - a review of quality of life measurement in diabetes

Aims Quality of life (QoL) is recognized widely as an important health outcome in diabetes, where the burden of selfmanagement places great demands on the individual. However, the concept of QoL remains ambiguous and poorly defined. The aim of our review is to clarify the measurement of QoL in terms of conceptualization, terminology and psychometric properties, to review the instruments that have been used most frequently to assess QoL in diabetes research and make recommendations for how to select measures appropriately.

Methods A systematic literature search was conducted to identify the ten measures most frequently used to assess QoL in diabetes research (including clinical trials) from 1995 to March 2008.

Results Six thousand and eight-five abstracts were identified and screened for instrument names. Of the ten instruments most frequently used to assess ‘QoL’, only three actually do so [i.e. the generic World Health Organization Quality of Life (WHOQOL) and the diabetes-specific Diabetes Quality of Life (DQOL) and Audit of Diabetes-Dependent Quality of Life (ADDQoL)]. Seven instruments more accurately measure health status [Short-Form 36 (SF-36), EuroQoL 5-Dimension (EQ-5D)], treatment satisfaction [Diabetes Treatment Satisfaction Questionnaire (DTSQ)] and psychological well-being [Beck Depression Inventory (BDI), Hospital Anxiety and Depression Scale (HADS), Well-Being Questionnaire (W-BQ), Problem Areas in Diabetes (PAID)].

Conclusions No single measure can suit every purpose or application but, when measures are selected inappropriately and data misinterpreted, any conclusions drawn are fundamentally flawed. If we value QoL as a therapeutic goal, we must ensure that the instruments we use are both valid and reliable. QoL assessment has the proven potential to identify ways in which treatments can be tailored to reduce the burden of diabetes. With careful consideration, appropriate measures can be selected and truly robust assessments undertaken successfully.

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 suitability of polycystic ovary syndrome-specific questionnaires for measuring the impact of PCOS on quality of life in clinical trials

Objectives: Generic patient-reported outcome (PRO) measures underestimate the impact of polycystic ovary syndrome (PCOS) on quality of life (QoL). The aim of this review was to identify PCOS-specific QoL measures and establish whether their development history and measurement properties support their use in clinical trials.

Methods: A systematic search was conducted using terms synonymous with “PCOS” and “QoL.” Following identification of measures, further searches were undertaken using the questionnaire name and abbreviation to explore its use, development history, and demonstrated measurement properties.

Results: Of 56 abstracts screened, 21 reported using PRO measures. One PCOS-specific QoL measure was identified: the PolyCystic Ovary Syndrome Questionnaire (PCOSQ). Nine papers show that the PCOSQ’s development history is somewhat incomplete, and that it does not have good content validity. The PCOSQ subscales demonstrate acceptable levels of reliability (0.70–0.97) and partial known-groups validity as well as convergent/divergent validity with other PRO instruments. Responsiveness
to change is variable and minimally important differences have not been established.

Conclusions: The PCOSQ is the only condition-specific measure of the impact of PCOS on QoL. Additional research is required to ensure its comprehensiveness, sensitivity, and to guide interpretation prior to including in clinical trials.

The impact of hypoglycemia on quality of life in type 2 diabetes : a systematic review.

Hypoglycemia is the commonest and most serious side-effect of insulin treatment for Type 1 diabetes (T1DM). The prevalence of hypoglycemia is lower in insulin-treated Type 2 diabetes (T2DM) than in T1DM but the prevalence increases with duration of insulin therapy and increasingly resembles T1DM. As hypoglycemia has not been widely recognised to affect people with T2DM, its impact on quality of life (QoL) has received little attention.

A systematic literature review was performed to identify empirical papers published in English since 1966 reporting the effect of hypoglycemia on any patient-reported outcomes (PROs), including QoL, in T2DM. Despite our specific interest in QoL, the inclusion criteria were defined broadly to encompass a range of self-assessed psychosocial outcomes, including generic and diabetes-specific QoL, emotional well-being and health utilities. Studies were excluded in which the impact of hypoglycemia was confounded by treatment effects. Our search included: MEDLINE, PsycINFO, CINAHL. Abstracts were screened independently by two investigators.

Of 2,469 abstracts, Thirty-one met the inclusion criteria and were subjected to data extraction and analysis. These comprised four controlled trials and twenty-seven others (including cross-sectional and health utility studies). The results indicate associations between the experience of hypoglycemia and a range of adverse PROs, including impaired QoL and well-being, higher levels of anxiety, depression and anger and loss of health utility. Fear of hypoglycemia was also associated with compensatory lifestyle limitations and changes.

Publications suggest that QoL and other psychosocial outcomes are impaired by the experience and/or fear of hypoglycemia in T2DM, however, very few studies have directly investigated this phenomenon to date. Interpretation of the evidence is hampered by inconsistent or inadequate definitions and measurement of both hypoglycemia and QoL outcomes, by confounding of the impact of hypoglycemia and by treatment factors. Targeted research using appropriate study design is needed to quantify and qualify the true impact of hypoglycemia on QoL in people with T2DM.

Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study

Purpose The aim of the present research was to determine the predictors of quality of life (QOL) among carers for people living with a chronic degenerative neurological illness, with comparisons of the differences in significant predictors of QOL between illness groups.
Methods Psychosocial and economic variables were examined among 192 carers for people living at home with motor neurone disease, Huntington’s disease, multiple sclerosis, and Parkinson’s, over a twelve-month period, to determine their contribution to the prediction of carer QOL.
Results Mood was the only consistent predictor of carer QOL across groups; however, marital relationship satisfaction, social support satisfaction, income, and economic pressure significantly predicted carer QOL for at least one of the illness groups, in addition to mood.
Conclusions The findings highlight the importance of recognising the varying roles that psychosocial and economic variables play on the prediction of carer QOL within each of these illness groups.