The development of a new measure of quality of life for children with congenital cardiac disease

The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context

The development of a new measure of quality of life in the management of gastro-oesophageal reflux disease: the Reflux Questionnaire.

INTRODUCTION This paper reports on the development of a new measure of health-related quality of life for use among patients with gastro-oesophageal reflux disease (GORD), funded as part of the REFLUX trial. This is a large UK multi centre trial that aims to compare the clinical and cost effectiveness of minimal access surgery with best medical treatment for patients with GORD within the NHS. Method Potential items were identified via a series of interviews and focus groups carried out with patients who were receiving/had received medical or surgical treatment for GORD. The final measure consisted of 31 items covering 7 categories (Heartburn; Acid reflux; Wind; Eating and swallowing; Bowel movements; Sleep; Work, physical and social activities). The measure produced two outputs: a quality of life score (RQLS) and five Reflux symptom scores. Reliability (internal consistency), criterion validity with the SF-36 and, sensitivity to change in terms of relationship with reported change in prescribed medication were assessed amongst a sample of 794 patients recruited into the trial. RESULTS The measure was shown to be internally consistent, to show criterion validity with the SF-36 and sensitive to changes in patients use of prescribed medication at baseline and 3 month follow-up. DISCUSSION The Reflux questionnaire is a new self-administered questionnaire for use amongst patients with GORD. Initial findings suggest that the new measure is valid, reliable, acceptable to respondents and simple to administer in both a clinical and research context

Parents' alcohol use: gender differences in the impact of household and family chores.

BACKGROUND: Social roles influence alcohol use. Nevertheless, little is known about how specific aspects of a given role, here parenthood, may influence alcohol use. The research questions for this study were the following: (i) are family-related indicators (FRI) linked to the alcohol use of mothers and fathers? and (ii) does the level of employment, i.e. full-time, part-time employment or unemployment, moderate the relationship between FRI and parental alcohol use? METHODS: Survey data of 3217 parents aged 25-50 living in Switzerland. Mean comparisons and multiple regression models of annual frequency of drinking and risky single occasion drinking, quantity per day on FRI (age of the youngest child, number of children in the household, majority of child-care/household duties). RESULTS: Protective relationships between FRI and alcohol use were observed among mothers. In contrast, among fathers, detrimental associations between FRI and alcohol use were observed. Whereas maternal responsibilities in general had a protective effect on alcohol use, the number of children had a detrimental impact on the quantity of alcohol consumed per day when mothers were in paid employment. Among fathers, the correlations between age of the youngest child, number of children and frequency of drinking was moderated by the level of paid employment. CONCLUSION: The study showed that in Switzerland, a systematic negative relationship was more often found between FRI and women's drinking than men's. Evidence was found that maternal responsibilities per se may protect from alcohol use but can turn into a detrimental triangle if mothers are additionally in paid employment

Childbearing and Economic Work: The Health Balance of Women in Accra, Ghana

Objectives: This study aims to investigate (1) whether the health of working women with young children differs from that of working women without young children, and (2) which social factors mediate the relationship between economic and maternal role performance and health among mothers with young children. Methods: The analyses uses panel data from 697 women present in both waves of the Women's Health Study for Accra (WHSA-I and WHSA-II); a community based study of women aged 18 years and older in the Accra Metropolitan Area of Ghana conducted in 2003 and 2008-2009. Change in physical and mental health between the survey waves is compared between women with a biological child alive at WHSA-II and born since WHSA-I and women without a living biological child at WHSA-II born in the interval. To account for attrition between the two survey waves selection models were used with unconditional change score models being used as the outcome model. Results: We found in our sample of working women that those who had a child born between WHSA-I and WHSA-II who was still alive at WHSA-II did not experience a change in mental or physical health different from other women. Among working women with young children, educational status, relationship to the household head and household demography were associated with change in mental health at the 5 % level, whilst migration status and household demography was associated with change in physical health scores. Conclusion: The results suggest there are no health penalties of combining work and childbearing among women with young children in Accra, Ghana

Time trends of chest pain symptoms and health related quality of life in coronary artery disease

BACKGROUND: There is at present a lack of knowledge of time trends in health related quality of life (HRQL) in common patients with coronary artery disease (CAD) treated in ordinary care. The objective of this study is to assess and compare time trends of health related quality of life (HRQL) and chest pain in patients with coronary artery disease. METHODS: 253 consecutive CAD patients in Stockholm County, Sweden – 197 males/56 females; 60 ± 8 years – were followed during two years. Perceived chest pain symptoms and three global assessments of HRQL were assessed at baseline, after one and after two years. EuroQol-5 dimension (EQ-5D) with a predefined focus on function and symptoms; the broader tapping global estimates of HRQL; EuroQol VAS (EQ-VAS) and Cardiac Health Profile (CHP) were used. Chest pain was ranked according to Canadian Cardiovascular Society (CCS). Change in HRQL was analysed by a repeated measurements ANOVA and chest pain symptoms were analysed by Friedman non-parametric ANOVA. RESULTS: Perceived chest pain decreased during the two years (p < 0.00022); CCS 0: 41–51%; CCS 1: 19–15%; CCS 2: 31–27%; CCS 3: 5–4% and CCS 4: 4–2%. By contrast, HRQL did not change: EQ-5D: 0.76 (CI 0.73–0.79) -0.78 (CI 0.75–0.81), EQ-VAS: 0.68 (CI 0.66–0.71)-0.68 (CI 0.65–0.71) and CHP: 0.66 (CI 0.64–0.69) -0.66 (CI 0.64–0.69). CONCLUSION: HRQL did not increase despite a reduction in the severity of chest pain during two years. This implies that the major part of HRQL in these consecutive ordinary patients with CAD is unresponsive to change in chest pain symptoms

Clinical audit of core podiatry treatment in the NHS

<p>Abstract</p> <p>Background</p> <p>Core podiatry involves treatment of the nails, corns and callus and also giving footwear and foot health advice. Though it is an integral part of current podiatric practice little evidence is available to support its efficacy in terms of research and audit data. This information is important in order to support the current NHS commissioning process where services are expected to provide data on standards including outcomes. This study aimed to increase the evidence base for this area of practice by conducting a multi-centre audit in 8 NHS podiatry departments over a 1-year period.</p> <p>Methods</p> <p>The outcome measure used in this audit was the Podiatry Health Questionnaire which is a self completed short measure of foot health including a pain visual analogue scale and a section for the podiatrist to rate an individual's foot health based on their podiatric problems. The patient questionnaire was completed by individuals prior to receiving podiatry care and then 2 weeks after treatment to assess the effect of core podiatry in terms of pain and foot health.</p> <p>Results</p> <p>1047 patients completed both questionnaires, with an age range from 26–95 years and a mean age of 72.9 years. The podiatrists clinical rating at baseline showed 75% of patients had either slight or moderate podiatric problems. The differences in questionnaire and visual analogue scores before and after treatment were determined according to three categories – <it>better, same, worse </it>and 75% of patients' scores either remained the same or improved after core podiatry treatment. A student t-test showed a statistical significant difference in pre and post treatment scores where P < 0.001, though the confidence interval indicated that the improvement was relatively small.</p> <p>Conclusion</p> <p>Core podiatry has been shown to sustain or improve foot health and pain in 75% of the patients taking part in the audit. Simple outcome measures including pain scales should be used routinely in podiatric practice to assess the affect of different aspects of treatments and improve the evidence base for podiatry.</p

Quantification of the level descriptors for the standard EQ-5D three-level system and a five-level version according to two methods

Objectives: Our aim was to compare the quantitative position of the level descriptors of the standard EQ-5D three-level system (3L) and a newly developed, experimental five-level version (5L) using a direct and a vignette-based indirect method. Methods: Eighty-two respondents took part in the study. The direct method represented a visual analog scale (VAS) rating of the nonextreme level descriptors for each dimension and each instrument separately. The indirect method required respondents to score 15 health scenarios with 3L, 5L and a VAS scale. Investigated were: (1) equidistance (Are 3L and 5L level descriptors distributed evenly over the VAS continuum?); (2) isoformity (Do the identical level descriptors on 3L and 5L yield similar results?); and (3) consistency between dimensions (Do the positions of similar level descriptors differ across dimensions within instruments?). Results: Equidistance without transformation was rejected for all dimensions for both 3L and 5L but satisfied for 5L after transformation. Isoformity gave mixed results. Consistency between dimensions was satisfied for both instruments and both methods. Discussion: The level descriptors have similar distributions across comparable dimensions within each system, but the pattern differs between 3L and 5L. This methodological study provides evidence of increased descriptive power and a broadened measurement continuum that encourages the further development of an official five-level EQ-5D

What is the value of social values? The uselessness of assessing health-related quality of life through preference measures

BACKGROUND: The use of preference-based measures in the evaluation of health outcomes has extended considerably over the last decade. Their alleged advantage over other types of general instruments in the evaluation of health related quality of life (HRQOL), supposedly lies in the fact that preference measures incorporate values or utilities that reflects the value of social preferences through health states. The objective of this study was to determine whether the use of social preference weights or utilities makes any real difference when calculating scores for the Euroqol (EQ5-D) questionnaire, a HRQOL preference-based measure. METHODS: Responses to the EQ5-D of a sample of 10,972 patients from 10 countries enrolled in an observational study of the treatment of schizophrenia in Europe were used for this purpose. Two different methods of scoring the EQ-5D where compared: 'weighting the items' of the questionnaire through the UK official weight coefficients, and 'non-weighting the items'. Pearson's, Spearman's, and two-way mixed parametric intraclass correlation coefficients were used to estimate the association of the scores obtained in both ways. RESULTS: The association between weighted and unweighted Euroqol scores was extremely high (Pearson's r = 0.91), as was the association between their ranks (Spearman's ρ = 0.93). The intraclass correlation coefficient obtained (0.89) also suggested that the concordance between the score distributions was prominent. CONCLUSIONS: A non-weighted approach to score the EQ5-D is enough to explain a high proportion of variance in scores obtained through the use of utilities. The differential contribution of weights based on population preference values is therefore minimal and, in our opinion, negligible

Health Related Quality of Life among Patients with Tuberculosis and HIV in Thailand

INTRODUCTION: Health utilities of tuberculosis (TB) patients may be diminished by side effects from medication, prolonged treatment duration, physical effects of the disease itself, and social stigma attached to the disease. METHODS: We collected health utility data from Thai patients who were on TB treatment or had been successfully treated for TB for the purpose of economic modeling. Structured questionnaire and EuroQol (EQ-5D) and EuroQol visual analog scale (EQ-VAS) instruments were used as data collection tools. We compared utility of patients with two co-morbidities calculated using multiplicative model (U(CAL)) with the direct measures and fitted Tobit regression models to examine factors predictive of health utility and to assess difference in health utilities of patients in various medical conditions. RESULTS: Of 222 patients analyzed, 138 (62%) were male; median age at enrollment was 40 years (interquartile range [IQR], 35-47). Median monthly household income was 6,000 Baht (187 US$; IQR, 4,000-15,000 Baht [125-469 US$]). Concordance correlation coefficient between utilities measured using EQ-5D and EQ-VAS (U(EQ-5D) and U(VAS), respectively) was 0.6. U(CAL) for HIV-infected TB patients was statistically different from the measured U(EQ-5D) (p-value<0.01) and U(VAS) (p-value<0.01). In tobit regression analysis, factors independently predictive of U(EQ-5D) included age and monthly household income. Patients aged ≥40 years old rated U(EQ-5D) significantly lower than younger persons. Higher U(EQ-5D) was significantly associated with higher monthly household income in a dose response fashion. The median U(EQ-5D) was highest among patients who had been successfully treated for TB and lowest among multi-drug resistant TB (MDR-TB) patients who were on treatment. CONCLUSIONS: U(CAL) of patients with two co-morbidities overestimated the measured utilities, warranting further research of how best to estimate utilities of patients with such conditions. TB and MDR-TB treatments impacted on patients' self perceived health status. This effect diminished after successful treatment

Evaluating the discriminatory power of EQ-5D, HUI2 and HUI3 in a US general population survey using Shannon’s indices

OBJECTIVES: To compare quantitatively the discriminatory power of the EQ-5D, HUI2 and HUI3 in terms of absolute and relative informativity, using Shannon's indices. METHODS: EQ-5D and HUI2/3 data completed by a sample of the general adult US population (N = 3,691) were used. Five dimensions allowed head-to-head comparison of informativity: Mobility/Ambulation; Anxiety/Depression/Emotion; Pain/Discomfort (EQ-5D; HUI2; HUI3); Self-Care (EQ-5D; HUI2); and Cognition (HUI2; HUI3). Shannon's index and Shannon's Evenness index were used to assess absolute and relative informativity, both by dimension and by instrument as a whole. RESULTS: Absolute informativity was highest for HUI3, with the largest differences in Pain/Discomfort and Cognition. Relative informativity was highest for EQ-5D, with the largest differences in Mobility/Ambulation and Anxiety/Depression/Emotion. Absolute informativity by instrument was consistently highest for HUI3 and lowest for EQ-5D, and relative informativity was highest for EQ-5D and lowest for HUI3. DISCUSSION: Performance in terms of absolute and relative informativity of the common dimensions of the three instruments varies over dimensions. Several dimensions are suboptimal: Pain/Discomfort (EQ-5D) seems too crude with only 3 levels, and the level descriptions of Ambulation (HUI3) and Self-Care (HUI2) could be improved. In absence of a formal measure, Shannon's indices provide useful measures for assessing discriminatory power of utility instrument