Multivariate analysis of factors influencing quality of life and utility in patients with hemophilia (original) (raw)
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Health Related Quality of Life (HRQoL) in patients with Hemophilia
2019
Background:Besides striving to achieve greater strides in treating Hemophilia, the importance of assessing patient’s perspective with Hemophilia is the need of the hour. Aim:A study to assess the Health Related Quality of Lifeamong patients with Hemophilia in the Hematology Outpatient Department of Christian Medical College, Vellore Methodology: A Non experimental descriptive design was undertaken. A total of 120 subjects with Hemophilia aged between 18-59 years were selected based on total enumeration sampling technique. The HRQoL was assessed using ‘A36 Hemophilia-QoL’questionnaire. Descriptive and inferential non parametric statistics such as frequency distributions, mean, standard deviation, ANOVA, Independent‘t’ test were used in this study Results: 83.3% of the population had Hemophilia ‘A’. 87.5% had severe Hemophilia. 87.5% of the population had joint bleed. 74.2% had knee as a target joint. Range of motion was predominantly impaired in knee(75.8%) and elbow(60.8%) joints. A...
Haemophilia, 2005
Summary. Although there is a worldwide interest in the assessment of health-related quality-of-life (HRQoL) in haemophilia patients, no non-disease specific instruments (for adults) are readily available. In this paper, a haemophilia-specific quality-of-life assessment measure for adults (the Hemofilia-QoL questionnaire) has been developed and tested for psychometric properties in 121 adults with haemophilia living in Spain. The Hemofilia-QoL questionnaire is a self-report modular instrument that assesses nine relevant HRQoL domains for patients with haemophilia (e.g. physical health, daily activities, joint damage, pain, treatment satisfaction, treatment difficulties, emotional functioning, mental health, relationships and social activity). Psychometric examination involved the assessment of data quality, scaling assumptions, reliability (internal consistency and test–retest) and validity (concurrent; external clinical criterion and sensitivity). The Hemofilia-QoL 36-item version questionnaire had acceptable internal consistency and retest reliability values. The questionnaire shows excellent concurrent validity (with the SF-36 Health Survey) and external clinical criterion validity (haemophilia clinical status) and sensitivity (health status changes) as well. The Hemofilia-QoL is now available for adult assessment and is ready for use in clinical research in Spain.
Health status and health‐related quality of life associated with hemophilia
American Journal of Hematology, 2002
The hemophilias are a group of disorders associated with a chronic burden of morbidity and early mortality. Improvements in these adverse features have been achieved by the use of clotting factor concentrates within comprehensive centers of specialized care providing home infusion programs. Offsetting effects from transfusion-transmitted hepatitis and HIV infection are in recent decline. The net impact of these changes merits assessment. To test the a priori hypotheses that increasing severity of factor VIII deficiency would be associated with an increasing burden or morbidity and that hepatitis and HIV positivity would impair health status further, a cross-sectional study of a populationbased cohort was undertaken in a regional hemophilia program in Ontario, Canada. A survey was made of mild, moderate, and severe hemophiliacs over 13 years of age who self-reported their health status using a standard 15-item questionnaire. The responses were converted to levels in the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems to form multi-element vectors from which singleattribute morbidity and overall health-related quality of life utility scores were determined. The burden of morbidity was greater in hemophiliacs than in the general population and correlated with the category of disease (mild < moderate < severe). Hepatitis and HIV positivity conferred additional burdens of morbidity, which were mainly in the attributes of mobility (HUI2), ambulation (HUI3), and pain (HUI2/3), all of these differences reaching levels of statistical significance. Despite demonstrable improvements in the safety, effectiveness, and utilization of clotting factor concentrates, hemophiliacs continue to experience an important burden of morbidity. Measurement of this burden, as reported here, provides a basis for future economic evaluation of the costs and consequences of health care interventions provided to this population. Am.
Haemophilia, 2004
A haemophilia-specific health-related quality-of-life questionnaire (named ÔHemofilia-QoLÕ) was developed to assess quality-of-life in adults with haemophilia, and was psychometrically tested. Seventy-three interviews with haemophilia patients and health care professionals were used to generate the items included in the questionnaire, and expert ratings on the items formulated were used to screen them for potential omission. This was followed by psychometric testing in a sample of 35 patients. Preliminary psychometric testing of the revised questionnaire version, which contains 10 domains (physical health, physical role, joint damage, pain, treatment satisfaction, emotional role, mental health, social support), showed acceptable reliability (a ¼ 0.94 for the Hemofilia-QoL total score) and validity, and this will be examined in a subsequent study with a larger patient sample.
Pediatric Hematology and Oncology, 2010
The aim of this study is to describe the health status, health care received, and their impact on the quality of life in patients with hemophilia. Patients with severe factor VIII or IX deficiency without inhibitors or other chronic disease were enrolled. Turkish version of the Hemophilia-Specific Quality of Life Index (Haemo-QoL) questionnaire was administered to the pediatric patients aged 4 to 16 years and Haem-A-QoL to the adult patients. Joints were evaluated according to the World Federation of Hemophilia (WFH) orthopedic joint scores.Thirty-nine children/adolescents and 31 adult patients were enrolled. Mean Haemo-QoL scores were 39.6 ± 15.0 for the children and mean Haem-A-QoL 47.4 ± 14.1 for the adult patients, respectively. Internal consistency reliability was generally sufficient. Total Cronbach's alpha coefficient was >.70 (range .77-.96) in all the age groups. Mean total WFH orthopedic joint scores were 1.83 ± 2.7, 4.9 ± 4.96, and 6.94 ± 6.15 in 4-7, 8-12, and 13-16-year-old groups, respectively. They were more impaired in the adult patients (16.23 ±14.12). These results show that the Turkish version of the Haemo-QoL and Haem-A-QoL are reliable instruments to measure the quality of life in the pediatric and adult patients with
Background and Objectives. Health Related Quality of Life (HRQoL) is an important health outcome measure in haemophilia. The aim of this study was to assess the psychometric properties of the Greek version of Haem-A-QoL, a disease-specific questionnaire for haemophiliacs. Methods. Haem-A-QoL and SF-36 were administered to 118 adult haemophilia patients. Hypothesized scale structure, internal consistency (Cronbach's), and test-retest reliability, as well as various types of construct validity were evaluated. Results. Scale structure of Haem-A-QoL was confirmed, with good item convergence (87%) and discrimination (80.6%) rates. Cronbach's was >0.70 for all but one dimension (dealing) and test-retest reliability was significantly high. The strength of Spearman's correlations between Haem-A-QoL and SF-36 scales ranged from 0.25 to 0.75 (< 0.01). Multiple stepwise linear regression analysis revealed that all but one Haem-A-QoL dimensions were important predictors of SF-36 scales. Known-groups comparisons yielded consistent support of the instruments' construct validity and significant relationships were identified for age, educational level, haemophilia type, disease severity, and viral infections. Conclusion. Overall, the psychometric properties of the Greek version of Haem-A-QoL, resulting from this first time administration of the instrument to Greek adult haemophiliacs, confirmed it as a reliable and valid questionnaire for assessing haemophilia-specific HRQoL in Greece.
2021
Background: Hemophilia affects the patients′ life in many aspects. The major concerns are restriction on physical activities, life-threatening bleeding, arthropathy, etc., and worsening mental issues like anxiety. This study aimed to evaluate the health-related quality of life in hemophilia patients.Methods: In this cross-sectional study, 147 patients with hemophilia had been referred to special patients′ clinic at Kermanshah province (IRAN) for comprehensive medical care services. The patients who met the criteria of this study were selected using counting sampling method and were assessed with the quality of life in hemophilia patients′ questionnaire (A36 Hemofilia-QoL® questionnaire).Results: Out of 147 patients with hemophilia, 139 were male and 8 were female. The mean age of the subjects was 25.85±15.54 years. The results demonstrate that the total score of 65 patients (44.2%) had poor quality, 60 patients (40.8%) had moderate quality and 22 patients (15.0%) had good quality of...