Ciaran O'Boyle

A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS

Quality of life is an increasingly important outcome measure in medicine and health care. Many measures of quality of life present patients with predetermined lists of questions that may or may not be relevant to the individual patient. This paper describes a brief measure, the SEIQoL-DW, which is derived from the schedule for evaluation of individual quality of life (SEIQoL). The measure allows respondents to nominate the areas of life which are most important, rate their level of functioning or satisfaction with each, and indicate the relative importance of each to their overall quality of life. Given its practicality and brevity, the measure should prove particularly useful in clinical situations where patient generated data on quality of life is important. This article describes the first clinical application of the measure, assessing the quality of life of a cohort of patients with HIV/AIDS managed in general practice.

Behaviour disturbance and other predictors of carer burden in Alzheimer's disease.

Objective. To investigate predictors of carer burden in Alzheimers disease (AD).

Measuring health-related quality of life in older patient populations: a review of current approaches

The changing demographic profile of the world’s population towards old age and evidence of people living for longer with less time spent in ill health highlight the importance of addressing quality-of-life (QOL) assessment issues for older people. The assessment of health-related QOL (HR-QOL) has received considerable attention in the last 2–3 decades, with a wide variety of assessment instruments available. These instruments can be either generic or disease specific, health profiles or preference based.The literature was reviewed systematically to identify studies measuring HR-QOL in older patient groups. A total of 37 studies were identified, 11 of which were randomised, controlled trials/evaluations, 14 were prospective studies that did not involve a randomised, controlled intervention, and 12 were cross-sectional studies. Studies were summarised in terms of the study aim, patient population characteristics, the instrument used to measure HR-QOL, and HR-QOL findings. A majority of studies used a generic HR-QOL instrument, the single most commonly used being the 36-Item Short-Form Health Survey. In many cases, a second disease-specific measure was used in combination with the generic measure. In a majority of studies involving interventions, significant improvements in HR-QOL were noted. In prospective studies, a negative impact of health conditions (e.g. myocardial infarction and chronic heart failure) was also identified using HR-QOL assessments.None of the studies in this review used HR-QOL measurement instruments that were old-age specific. Using instruments that are not specific to a particular age group enables comparisons to be made with other age groups, i.e. younger or middle-aged groups. However, the questionnaire items of HR-QOL instruments tend to be phrased predominantly in relation to physical function and thus may inadvertently discriminate against older persons, whose physical function is likely to be not as good as that of younger people. Particular issues in the assessment of HR-QOL in older patient populations include the persistent finding of a poor relationship between QOL and disability/disease severity, the dynamic nature of QOL, and the importance of valid proxy ratings for those unable to make decisions or communicate for themselves.It is important, therefore, that assessment of HR-QOL incorporates issues of importance to individual older people by broadening the scope of the measurement instruments, thus representing more validly the HR-QOL status of older patient groups. Future research in HR-QOL must incorporate the perspective of the individual in order to enable valid conclusions to be derived based on content that is relevant to the individual being assessed, thus informing management decisions, policy and practice more meaningfully.

Development of a direct weighting procedure for quality of life domains

The Schedule for the Evaluation of Individual Quality of Life allows individuals to nominate the domains they consider most important to their quality of life and to use their own value system when describing the functional status and relative importance of those domains. The weights for domain importance are derived through a procedure called judgement analysis. As judgement analysis is impractical for individuals with cognitive impairment and in many clinical situations, a shorter, direct weighting procedure has been developed. To test the new procedure, 40 healthy individuals completed both direct and judgement analysis weightings, at t1 and 7-10 days later (t2). After a further 7-10 days (t3), they were asked to identify the weight profiles they had previously produced using each method. The weights produced by the two methods differed on average by 7.8 points at t1 and 7.2 points at t2. The direct weights changed on average by 4.5 points from t1 to t2, while the judgement analysis weights changed by 8.4 points. At t3, 55% of individuals were able to identify the direct weights they had previously produced. The new procedure demonstrates stability and validity but is not interchangeable with judgement analysis. The most appropriate ways of using and interpreting both procedures are discussed.

Response shift masks the treatment impact on patient reported outcomes (PROs): the example of individual quality of life in edentulous patients

BackgroundQuality of life (QoL) is now established as an important outcome for evaluating the impact of disease, and for assessing the efficacy of treatments. However, individuals change with time and the basis on which they make a QoL judgement may also change, a phenomenon increasingly referred to as response shift. Here, the individual may change his or her internal standards, values, and/or conceptualization on the target construct as a result of external factors such as a treatment or a change in health status. This has important implications for assessing the effects of treatments as a change in QoL may reflect a response shift, a treatment effect, or a complex combination of both. In this study, we used an individualised quality of life (IQoL) measure, the SEIQoL, together with a then-test to determine whether response shift would influence the measurement of treatment efficacy in edentulous patients.MethodsData are reported here for the first phase of a randomised controlled clinical trial designed to assess the impact, on IQoL, of implant supported dentures compared with high quality conventional dentures. IQoL was measured using the SEIQoL-DW in 117 patients (mean age 64.8; 32% male) at baseline (T1) and 3 months (T2) after receiving high quality conventional dentures. The work was carried out in dental teaching hospitals in Dublin and Belfast.ResultsUnadjusted SEIQoL index scores revealed no significant impact of treatment at three months (baseline: 75.0; 3 months: 73.2, p = .33, n.s.). However, the then-test at 3 months revealed that patients retrospectively rated their baseline IQoL as significantly lower (P < .001) than they had rated it at the time (then-test baseline: 69.2). Comparison of the 3 month scores with this readjusted baseline indicated a significant treatment effect (then-test baseline: 69.2; 3 months: 73.2, p = 0.016). 81% of patients nominated at least one different IQoL domain at 3 months.ConclusionThe positive impact of denture treatment for edentulous patients on IQoL was seen only when response shifts were taken into consideration. The nature of the response shifts was highly complex but the data indicated a degree of re-conceptualisation and reprioritisation. Assessment of the impact of treatments using patient-generated reports must take account of the adaptive nature of patients.

Quality of life: impact of chronic illness on the partner.

Patient quality of life is an increasingly important outcome measure in medicine and healthcare. It is now widely used in clinical trials and in patient management for assessing morbidity and the impact of treatment1. In the past, quality of life studies focused almost exclusively on changes in the quality of life of patients, but increasing attention is now being paid to the impact of chronic disease on carers. The ageing of the population and changes in medical practice resulting in shorter inpatient hospital stay and longer survival have substantially increased the burdens on carers, most of whom are partners2. In this paper, we examine research on partner quality of life and highlight some of the methodological challenges and the clinical implications. The background to this overview is collaborative research conducted in the Department of Urology in Taunton and the Department of Psychology at the Royal College of Surgeons in Ireland3,4,5,6. Further references were obtained by searching various databases (PubMed, CancerLit, PsycInfo, EMBASE and British Nursing Index) with the keywords ‘quality of life, burden, impact, partners, caregivers and carers’.

Assessing individual quality of life in amyotrophic lateral sclerosis

Background: Quality of life (QoL) assessment in amyotrophic lateral sclerosis (ALS) has typically involved the use of general or disease-specific health status questionnaires. This study assessed the feasibility of using a patient-centered approach to QoL measurement in ALS. Objectives: (1) To assess the internal consistency reliability and validity of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) as a measure of QoL in ALS. (2) To provide a brief description of QoL in ALS, and to examine the relationships between QoL, illness severity and psychological distress in this group. Methods: Twenty-six patients with ALS were recruited through the Irish Register for ALS/motor neurone disease (MND). Illness severity was assessed with the ALS Functional Rating Scale (ALSFRS). Levels of psychological distress were measured with the Hospital Anxiety and Depression Scale (HADS). Individual QoL was assessed with SEIQoL. Results: Patients were at various stages of ALS. Mean levels of anxiety and depression were in the normal range. Twenty-one patients completed SEIQoL; five patients completed a shorter version, SEIQoL-Direct Weighting (SEIQoL-DW). Internal consistency reliability and validity results for SEIQoL were high. Conclusions: SEIQoL is generally acceptable for use in ALS in terms of its practical feasibility, and has high internal validity and consistency reliability in this patient group. However, patients severely disabled by ALS may not be able to complete SEIQoL; further research is required to confirm the use of SEIQoL-DW as an alternative measure of individual QoL in ALS.

Relations between desire for early death, depressive symptoms and antidepressant prescribing in terminally ill patients with cancer

Some patients with advanced cancer express the wish for an early death. This may be associated with depression. We examined the relations between depressive symptoms and desire for early death (natural or by euthanasia or physician-assisted suicide) in 142 terminally ill patients with cancer being cared for by a specialist palliative care team. They completed the Hospital Anxiety and Depression Scale questionnaire and answered four supplementary questions on desire for early death. Only 2 patients expressed a strong wish for death by some form of suicide or euthanasia. 120 denied that they ever wished for early release. The desire for early death correlated with depression scores. Depressive symptoms were common in the whole group but few were on antidepressant therapy. Better recognition and treatment of depression might improve the lives of people with terminal illness and so lessen desire for early death, whether natural or by suicide.

The measurement of response shift in patients with advanced prostate cancer and their partners

BackgroundThere is increasing evidence to support the phenomenon of response shift (RS) in quality of life (QoL) studies, with many current QoL measures failing to allow for this. If significant response shift occurs amongst prostate cancer patients, it will be necessary to allow for this in the design of future clinical research and to reassess the conclusions of previous studies that have not allowed for this source of bias. This study therefore aimed to assess the presence of RS and psychosocial morbidity in patients with advanced prostate cancer and their partners.Methods55 consecutive advanced prostate cancer patients and their partners completed the Prostate Cancer Patient & Partner questionnaire (PPP), shortly after diagnosis and again at 3 months and 6 months. At the follow-up visits, both patients and partners also completed a then-test in order to assess RS.ResultsPartners consistently showed greater psychological morbidity than patients in relation to the prostate cancer. This was most marked on the General Cancer Distress (GCD) subscale (p < 0.001, paired t-test), and regarding worries about treatment (p = 0.01). Significant RS was identified in partners and patients by the use of the then-test technique, particularly on the GCD subscale, the concerns about treatment and the concerns about urinary symptoms items.ConclusionThese results suggest the presence of RS in patients with advanced prostate cancer and their partners, with higher levels of psychosocial morbidity noted amongst partners. This is the first study to identify RS in partners and calls into question the interpretation of all studies assessing changes in QoL that fail to allow for this phenomenon.

Conceptual approaches to the assessment of quality of life

Abstract This paper provides an overview of the two main conceptual approaches to quality of life assessment; the standard needs approach where quality of life is seen as the extent to which certain universal needs are met and the psychological processes approach where quality of life is considered to be constructed from individual evaluations of personally salient aspects of life. The domains to be considered, their relative values and the criteria used to judge life quality are outlined for a number of assessment approaches. Psychological processes which can influence quality of life evaluations are described along with recommendations for their systematic evaluation in future study designs.