Détresse psychologique chez les personnes atteintes du VIH à Montréal

Le présent article décrit les préoccupations psychologiques reliées au VIH dans un échantillon montréalais de 128 personnes atteintes du virus, qui ont participé à une enquête nationale plus large sur les besoins et les services en santé mentale en rapport avec cette infection au Canada. Nous avons examiné les problèmes psychologiques causés par le VIH à Montréal, en comparaison d'autres villes du Canada, et dans divers sous-groupes définis selon le sexe, l'âge, le diagnostic et le facteur de risque. Les résultats montrent que même si l'infection au VIH a de fortes et profondes incidences sur la santé mentale, il existe des différences dans les genres de préoccupations et de problèmes qui affligent des groupes particuliers de répondants montréalais. L'incertitude de l'avenir et l'incapacité de réaliser ses buts dans la vie, ainsi que des sentiments d'impuissance et de peur face aux conséquences neurologiques virtuelles du VIH, étaient des sources majeures de détresse psychologique. Les sentiments de dépression, d'anxiété et de colère, de même que les inquiétudes soulevées par une détérioration physique croissante, la douleur, le danger d'infecter autrui, la confidentialité et la situation financière, étaient des sujets d'angoisse prédominants parmi les sous-groupes étudiés. Les différences entre les répondants en termes de sources de revenu, d'âge et de sexe et, dans une moindre mesure, de diagnostic et de facteur de risque, étaient associées à des niveaux variables de détresse psychologique. Bien que les répondants de Montréal (et de Vancouver) étaient moins angoissés que ceux de Toronto et de Halifax, cette divergence semblait tenir principalement à des différences d'âge et de revenu. Les données de l'enquête pourront servir aux décideurs et aux planificateurs du domaine de la santé à mettre au point les services nécessaires pour répondre aux besoins psychologiques des adultes atteints du VIH.This paper describes the HIV-related mental health concerns of a sample of 128 persons with HIV infection in Montréal who participated in a larger national survey of HIV-related mental health needs and services in Canada. We examined mental health distress in persons with HIV infection in Montréal compared to other cities in Canada, and in subgroups of HIV-infected Montrealers defined on the basis of sex, age, diagnosis, and risk factor status. Results demonstrate that although HIV infection has a strong and far reaching impact on mental health, there are differences in the types of concerns and issues that are distressing to specific groups of Montréal respondents. Uncertainty about the future and not being able to realize life goals, as well as feelings of helplessness and fears about potential adverse neurological consequences of HIV disease, were major sources of psychological distress. Feelings of depression, anxiety, and anger, as well as concerns about increasing physical disability, pain, infecting others, confidentiality, and finances were predominant concerns among specific subgroups. Differences between respondents in terms of source of income, age, and sex, and to a lesser extent diagnosis and risk factor status, were associated with varying levels of mental health distress. Although respondents in Montréal (and Vancouver) were more distressed than respondents in Toronto and Halifax, these differences appear to be due primarily to differences in age and source of income. Findings from this study will be useful to policy makers and health planners in developing services to meet the mental health needs of HIV infected adults

Intervention psychosociale auprès des personnes infectées par le VIH

Nous décrivons ici un programme d'intervention psychosociale conçu pour mieux traiter le stress associé à l'infection du VIH. Le programme d'intervention NUCARE se fonde sur six composantes : restructuration cognitive, résolution de problèmes, relaxation, détermination d'objectifs, soutien social et utilisation de ressources et de services. Nous décrivons ici la logique et le développement de l'intervention, et présentons des exemples concrets pour illustrer les avantages de chacune de ses composantes.We describe a psychosocial intervention program designed to enhance coping with the stress associated with HIV infection. The NUCARE intervention program is based on six components of coping including: cognitive refraining, problem-solving, relaxation, goal setting, social support and use of resources and services. The rationale and development of the intervention is discussed and practical case examples illustrating the benefits of each component are presented

Using mixed methods to select optimal mode of administration for a patient-reported outcome instrument for people with pressure ulcers.

BACKGROUND: When developing new measuring instruments or deciding upon one for research, consideration of the 'best' method of administration for the target population should be made. Current evidence is inconsistent in differentiating superiority of any one method in terms of quantity and quality of response. We trialed a novel mixed methods approach in early scale development to determine the best administration method for a new patient-reported outcome instrument for people with pressure ulcers (the PU-QOL). METHODS: Cognitive interviews were undertaken with 35 people with pressure ulcers to determine appropriateness of a self-completed version of the PU-QOL instrument. Quantitative analysis, including Rasch analysis, was carried out on PU-QOL data from 70 patients with pressure ulcers, randomised to self-completed or interview-administered groups, to examine data quality and differential item functioning (DIF). RESULTS: Cognitive interviews identified issues with PU-QOL self-completion. Quantitative analysis supported these findings with a large proportion of self-completed PU-QOLs returned with missing data. DIF analysis indicated administration methods did not impact the way patients from community care settings responded, supporting the equivalence of both administration versions. CONCLUSIONS: Obtaining the best possible health outcomes data requires use of appropriate methods to ensure high quality data with minimal bias. Mixed methods, with the inclusion of Rasch, provided valuable evidence to support selection of the 'best' administration method for people with PUs during early PRO instrument development. We consider our approach to be generic and widely applicable to other elderly or chronically ill populations or suitable for use in limited samples where recruitment to large field tests is often difficult

Psychometric properties of the Stroke and Aphasia Quality of Life Scale (SAQOL-39) in a generic stroke population

Background: We previously developed the Stroke and Aphasia Quality of Life scale (SAQOL-39) and tested it with people with chronic aphasia. A scale allowing comparisons of quality of life between people with versus without aphasia post-stroke would be of value to clinicians. Objectives: To evaluate the psychometrics of the SAQOL-39 in a generic stroke sample. Should this process result in a generic-stroke version of the scale (SAQOL-39g), a further aim is to compare the latter and the SAQOL-39 as tested in chronic aphasia. Design and subjects: Repeated measures psychometric study, evaluating internal consistency, test—retest reliability, construct validity and responsiveness to change. People admitted to hospital with a first stroke were assessed two weeks, three months and six months post stroke. Measures: SAQOL-39, National Institutes of Health Stroke Scale, Barthel, Frenchay Aphasia Screening Test, General Health Questionnaire-12 and Frenchay Activities Index. Results: Of 126 eligible participants, 96 (76%) participated and 87 (69%) were able to self-report and are presented here. Testing the SAQOL-39 in generic stroke resulted in the SAQOL-39g, which has the same items as the SAQOL-39 but three domains: physical, psychosocial, communication. The SAQOL-39g showed good internal consistency (α = 0.95 overall score, 0.92—0.95 domains), test—retest reliability (interclass correlation (ICC) = 0.96 overall, 0.92—0.98 domains), convergent (r = 0.36—0.70 overall, 0.47—0.78 domains) and discriminant validity (r = 0.26 overall, 0.03—0.40 domains). It differentiated people by stroke severity and visual analogue scale (VAS)-defined quality of life. Moderate changes (d = 0.35—0.49; standardized response mean (SRM) = 0.29—0.53) from two weeks to six months supported responsiveness. Conclusions: The SAQOL-39g demonstrated good reliability, validity and responsiveness to change. It can be used to evaluate quality of life in people with and without aphasia post stroke

Responsiveness of the coronary revascularisation outcome questionnaire compared with the SF-36 and Seattle Angina Questionnaire.

We describe a comparison of the responsiveness of three validated instruments when used with patients undergoing coronary bypass surgery (CABG) and angioplasty (PTCA). Patients were randomly selected to receive the Coronary Revascularisation Outcome Questionnaire (CROQ), and either the Seattle Angina Questionnaire (SAQ), or the SF-36 before and 3 months after coronary revascularisation. At total of 199 patients (127 CABG, 72 PTCA) completed the CROQ; 55/72 CABG and 34/38 PTCA patients also completed the SAQ or SF-36, respectively. Effect sizes and standardised response means were calculated as change over the 3-month period for scales measuring similar constructs on each instrument. We used bootstrap estimation to derive 95% confidence intervals for differences in the responsiveness indices. For CABG, the CROQ demonstrated significantly greater change in psychosocial functioning than the SF-36, but less than the SAQ. For PTCA, the CROQ showed greater change for symptoms than the SAQ, but the SAQ was more responsive in terms of physical functioning; and the CROQ showed significantly greater change than the SF-36 for psychosocial functioning. There were no other significant differences between similar scales on the three instruments. In conclusion, the CROQ was as responsive as the disease-specific SAQ and more responsive than the generic SF-36

Evaluation of outcomes in chronic venous disorders of the leg: development of a scientifically rigorous, patient-reported measure of symptoms and quality of life.

OBJECTIVE: The purpose of this study was to develop a practical and scientifically rigorous, patient-reported outcome measure to evaluate quality of life and symptoms across the range of conditions (eg, telangiectasias, varicose veins, edema, skin changes, leg ulcers) in chronic venous disorders of the leg (CVDL). METHODS: This study was a psychometric study within the VEnous INsufficiency Epidemiological and Economic Study (VEINES), an international, prospective cohort study to evaluate clinical outcomes, quality of life, costs, and use of health services in CVDL. The study was set in the 166 general practices and 116 specialist clinics in Belgium, France, Italy, and Canada (Quebec) that participated in the VEINES study plus in additional specialist clinics in Ottawa and Montreal. Field testing was carried out in three samples of patients in four countries (Belgium, France, Italy, Canada), including participants in the VEINES study (n dagger 1531) and patients recruited in additional samples of 88 English-speaking patients (Canada) and 53 French-speaking patients (Belgium, France). The reliability and validity sample (n = 615) included 527 VEINES patients and 88 patients from the supplementary English-speaking sample. The test-retest sample (n = 135) included 53 French-speaking and 82 English-speaking patients from the supplementary samples. The responsiveness sample included 1516 VEINES patients. The 26-item VEINES-QOL/Sym is a new, patient-reported questionnaire to evaluate symptoms and quality of life and is available in four language versions (English, French, Italian, French Canadian). RESULTS: Standard psychometric tests confirmed the acceptability (missing data, item endorsement frequencies, floor and ceiling effects), reliability (internal consistency, item-total, inter-item correlations) and validity (content, construct, convergent, discriminant, known groups) of the four language versions of the VEINES-QOL/Sym and the test-retest reliability of the English and French versions and provided preliminary evidence of responsiveness in a pooled language sample. CONCLUSION: The VEINES-QOL/Sym is a practical and scientifically sound, patient-reported measure of outcomes in CVDL that has been developed with rigorous methods. As the only fully validated measure of quality of life and symptoms that is appropriate for use across the full spectrum of CVDL-related conditions, that is quick and easy to administer, and that is available in four languages, the VEINES-QOL/Sym provides a rigorous tool for improving the evaluation of outcomes in clinical trials, epidemiologic studies, and audit

The community-acquired pneumonia symptom questionnaire: a new, patient-based outcome measure to evaluate symptoms in patients with community-acquired pneumonia.

STUDY OBJECTIVE: s: To develop and validate a patient-based outcome measure to evaluate symptoms in patients with community-acquired pneumonia (CAP). DESIGN: A psychometric study within an international, prospective, randomized, double-blind study. The CAP-symptom questionnaire (CAP-Sym) is a new, 18-item, patient-reported outcome measure that evaluates the bothersomeness of CAP-related symptoms during the past 24 h using a 6-point Likert scale. We used "gold standard" psychometric methods to comprehensively evaluate the acceptability, reliability, validity, and responsiveness of the CAP-Sym. SETTING: Sixty-four centers in 13 countries (France, Germany, Hungary, Israel, Italy, Norway, Poland, Portugal, South Africa, Spain, Sweden, Switzerland, United Kingdom). PATIENTS: Five hundred fifty-six patients with CAP, recruited from outpatient clinics, general practice, and hospital centers. INTERVENTIONS: Randomization 1:1 to moxifloxacin (400 mg once daily), oral or standard oral treatment (amoxicillin, 1 g tid, or clarithromycin, 500 mg bid), alone or in combination, for up to 14 days. RESULTS: Standard psychometric tests confirmed the acceptability (item nonresponse, item-endorsement frequencies, item/scale floor and ceiling effects), reliability (internal consistency, item-total and inter-item correlations, test-retest reliability), validity (content, construct, convergent, discriminant, known groups), and responsiveness of the CAP-Sym. CONCLUSIONS: The CAP-Sym is a practical and scientifically sound patient-based outcome measure of CAP-related symptoms that has been developed using "gold standard" methods. As the only fully validated measure of symptoms in patients with CAP, which is quick and easy to administer and is more responsive than the generic Medical Outcomes Study 36-Item Short-Form Health Survey, the CAP-Sym provides a practical and rigorous method for improving the evaluation of outcomes in clinical trials and audit

Costs of dialysis for elderly people in the UK.

BACKGROUND: Growing acceptance rates of elderly patients for dialysis requires a careful planning of renal services expansion. As little is known about the actual resource use in patients 70 years and over, we evaluated the entire range of costs related to treatment, hospitalization, medication and other health and social service use, and assessed the impact of socio-demographic and clinical factors on costs. METHODS: Service use and costs were assessed in a 12-month prospective cohort study of 171 dialysis patients, 70 years of age and over, from four hospital-based renal units in London, UK. RESULTS: Total costs ranged between 14,940 pounds and 58,250 pounds per annum. The average annual cost was 22,740 pounds [95% confidence interval (CI), 21,470-24,020 pounds]. The majority of costs were allocated to dialysis treatment and transport (70%), hospitalizations (12%) and medication (12%). Other health and social services accounted for only 6% of total costs. Dialysis and hospitalization costs were pound 68.4 per day on average. Univariate subgroup analyses showed no significant difference between patients on peritoneal dialysis (64.5 pounds) and haemodialysis (71.5 pounds, P = 0.13). Age 80 years and over and presence of peripheral vascular disease (PVD) were associated with higher daily costs of 73.3 pounds compared with 63.2 pounds in the 70-74 age group (P = 0.033) and 76.9 pounds vs 63.8 pounds in patients without PVD (P = 0.022), respectively. Proximity to death was associated with a nearly pound 40 increase in daily costs (96.8 vs 59.7 pounds; P < 0.001). Multiple linear regression analyses confirmed these findings and showed that age 80 years and over and presence of peripheral and cerebrovascular disease were significant predictors of costs. There was a large but marginally significant difference in costs in patients with cancer. We found no evidence that diabetes was associated with higher dialysis and hospitalization costs. CONCLUSIONS: The costs of providing dialysis for patients 70 years and over are largely shaped by the treatment costs rather than by use of community health and social services. Though age above 80 and co-morbidity are associated with increased resource use, average treatment costs are not higher than estimates for dialysis patients in general. This suggests that there is no case for providing treatment to younger patients and denying it to elderly patients on grounds of cost

Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39): evaluation of acceptability, reliability, and validity.

BACKGROUND AND PURPOSE: Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. METHODS: We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. RESULTS: A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy). The SAQOL-39 demonstrated good acceptability, internal consistency (Cronbach's alpha=0.74 to 0.94), test-retest reliability (intraclass correlation coefficient=0.89 to 0.98), and construct validity (corrected domain-total correlations, r=0.38 to 0.58; convergent, r=0.55 to 0.67; discriminant, r=0.02 to 0.27 validity). CONCLUSIONS: The SAQOL-39 is an acceptable, reliable, and valid measure of HRQL in people with long-term aphasia. Further testing is needed to evaluate the responsiveness of the SAQOL-39 and to investigate its usefulness in evaluative research and routine clinical practice