Determinants of Quality of Life in Children and Adolescents With Hemophilia in Kabul, Afghanistan IRANIAN MEDICINE (original) (raw)
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Health-Related Quality of Life in Egyptian Children and Adolescents with Hemophilia A
Pediatric Hematology and Oncology, 2011
Quality of life (QoL) in hemophilia is an important area in hemophilia outcome assessment. The Haemo-QoL instrument is a set of questionnaires to measure QoL in those children. The objectives of this study was to assess health-related quality of life (HRQoL) in Egyptian hemophilic children and adolescents using an Arabic version of the Haemo-QoL questionnaire. Sixty patients with severe hemophilia A were recruited from 2 hemophilia treating centers in Egypt. Assessment of quality of life was done using the Haemo-QoL questionnaire. The scores of HRQoL were found to be for all dimensions widely above 50. It was highly significant in the 3 dimensions (physical health-family-treatment) in different age groups, but it was impaired in the dimension of "physical health" for 2 groups, and in the dimension of "family" for the oldest group, whereas the youngest group had highly impaired scores concerning the "treatment. " The HRQoL in this study was not affected by the presence of factor VIII (FVIII) inhibitors. The QoL in hemophilic patients in Egypt needs strenuous efforts from hemophilia care-integrated teams of pediatric hematologists and psychiatrists in order to properly assess and improve QoL.
Analysis of the Clinical Factors Affecting the Quality of Life in Children with Hemophilia A
International Journal Of Scientific Advances, 2022
Background: Utilization of a specified questionnaire to measure the Health-related quality of life (HRQoL) in children with hemophilia is unusual especially in a country with resources limited settings. The objective of this study is to analyze the quality of life (QoL) of children with hemophilia A and the clinical factors that affect them. Methods: A cross-sectional study was conducted in September 2021. The participants were children with hemophilia A who were registered at the Indonesian Hemophilia Society Association (IHSA) in Surabaya. Inpatients, children with cognitive impairment, mental health disorder, aged 8 to 16 years old and cannot read, and declined to participate are not included. The questionnaires are using Hemophilia-Specific Quality of Life (Haemo-QoL) which have been validated in Bahasa Indonesia. HRQoL was assessed for 3 age groups (I: 4 to 7; II: 8 to 12; and III: 13 to 16 years). Results: All participants (21 children) were male with a median age of 148 month...
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...
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...
Qualityof Life Determinationamong Hemophiliac Children
Objective: To identify the quality of life determination among hemophilic children at al -hakeem general hospital. To find out the relationship between hemophiliac children quality of life and their socio-demographic characteristic of age, gender, parents educational levels, family type and socio-economic status Methodology: A descriptive study designed to find the quality of life among hemophilic children. The study was carried out the period from March 6th to April 4th 2016.
Health status of persons with hemophilia: A pilot survey from a resource-constrained Country
Nigerian Medical Journal, 2019
IntroductIon Hemophilia is a lifelong bleeding disorder which is potentially disabling, depending on the bleeding phenotype of the person. It is classified as mild, moderate, or severe depending on the specific plasma factor levels. Persons with severe hemophilia are prone to repeated and spontaneous bleeds which may occur at an early age, whereas those with mild forms hardly bleed without significant trauma. 1,2 Symptoms manifest as bleeding into the muscles, joints, body cavity, as well as postsurgical bleeds. 3 Mucocutaneous and intracranial bleeds are not uncommon, in severe diseases. 4 These bleeding symptoms invariably determine the health status of persons with hemophilia (PWH). Other factors that may influence their health status include the availability and accessibility of factor replacement therapy, presence of complications of the disease and its treatment, access to care including specific and adjunct care, as well as how the PWH handles his/her condition. 5-7 The management of hemophilia involves the prophylactic or on-demand replacement of the deficient factors, factor (F) VIII in the case of hemophilia A and FIX in the case of hemophilia B, effective in reducing disease-related complications. 8 The hematologist, nurse, physiotherapist, laboratory scientist, and the mental health specialist form the core team of a hemophilia treatment center (HTC). With the inclusion of the dentist, gynecologist, geneticist, orthopedic surgeon, and chronic pain specialist, a comprehensive team is formed. 9,10 Managing a PWH is of high economic impact and not without its challenges. 11,12 It involves a degree of harmony between the team members of a HTC, PWH, as well as his/her family. A quality care when offered, for instance, Background: Most resource-poor countries are yet to develop standard hemophilia treatment center (HTC) despite improved outcome of health status of persons with hemophilia (PWH). Aim: This study aimed to evaluate the health status of PWH in Nigeria. Methodology: In this descriptive, cross-sectional study, modified prevalidated and pretested questionnaire (National health and Nutrition examination survey (NHANES) 2013 Health Status questionnaire (HSQ)) was consecutively administered to consenting PWH (pediatric and adult) attending the 2018 Annual General Meeting of the Haemophilia Foundation of Nigeria. The study's measurable outcome variables were calculated health status and its determinants. Association between the outcome variables and clinical characteristics of PWH was done using SPSS software version 22, and P < 0.05 was considered statistically significant. Results: Of the 36 PWH who participated in the survey, 50% had good health status, 38.9% had poor health status, while only 11.1% had excellent health status. A majority (88.9%) had access to HTC with <6 consultations in the past year. Nearly 47.2% were hospitalized for disease-related problem in the past year. There was nonsignificant difference between health status and disease type (P = 0.751) and severity (P = 0.086), treatment plan (0.496), type of treatment facility (P = 0.152), and access to a doctor (P = 0.67). Conclusion: Several PWH in resource-poor settings still suffer serious morbidity that impacts negatively on their health status. More robust (multicenter) research is needed to ascertain the true picture of health status of PWH in resource-poor countries.
Quality of life in haemophilia carriers - preliminary results of the ESCHQoL study
Haemophilia, 2008
The signature of the GAP agreement between the WFH and the Ministry of Health in Jordan represented a significant step forward for the Hemophilia community (patients, families, doctors and health care professionals) in the country. The GAP has provided Jordan with the experiences and the means to achieve remarkable improvements in hemophilia care. The main result was raising the number of identified patients. More than 230 patients with hemophilia have been identified and more than 300 patients and their families have received training and education. Other results include the creation of a national committee for supervising the national Hemophilia program as part of the health system, the establishment of a new national registry and the increasing of the government purchases of factor concentrates. Since the start of the GAP project in Jordan, the modality of treatment changed from mainly cryoprecipitate (for hemophilia A) and fresh frozen plasma (for hemophilia B), to factor concentrates. The factor concentrates usage per capita reached 0.4 compared to 0.12 at the start of GAP. The Jordan Hemophilia Society has been actively involved in all the action conducted under the GAP. In addition to organizing awareness activities and training workshops for the board members, the volunteers, patients, families, and youth and mothers groups, the JHS was involved in the organization of symposiums and workshops for educating and training clinicians, nurses, laboratory scientists, physiotherapists (physiotherapy clinic), and other healthcare professionals to ensure adequate expertise in diagnosis and treatment.
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
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.