Health-Related Quality of Life and Psychological Aspects of Adults With Hemophilia in Iran (original) (raw)
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Adult Hemophiliacs in Pakistan: Health-Related Quality of Life and Psychological Aspects
Journal of Rawalpindi Medical College (Print), 2023
Objective: The goal of this investigation is to assess how psychological factors and pain affect adult hemophiliac patients' well-being. Materials and Methods: On 102 hemophiliacs, a cross-sectional study was done. Data were gathered using visual analog scales for pain, depression anxiety stress assessments, and quality of life questionnaires specific to hemophilia. Regression analysis, analysis of covariance, and correlation coefficients were used to analyze the data. Results: According to the findings, 70.8% of hemophiliac patients felt pain on the research day. Patients with hemophilia had an average HRQoL score of 50.08 (standard deviation: 18.49). Additionally, stress, worry, and mild to serious depression were present in 45.7 %, 63.5%, and 58.3% of the patients, respectively. Additionally, a substantial correlation between HRQoL and sadness, anxiety, and pain intensity was found. The study variables were able to explain 47% of changes in HRQOL in the regression model, with depression and pain intensity serving as important predictors. Conclusion: To enhance the psychosocial health and quality of life of patients, emphasis should be given to these factors.
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...
European journal of haematology, 2018
Pain, functional impairment, anxiety, and depression associated with joint disease may affect health-related quality of life (HRQoL) in people with hemophilia. To report detailed patient-reported outcomes (PRO) assessments related to HRQoL in participants in the Pain, Functional Impairment, and Quality of Life (P-FiQ) study. Pain and HRQoL were assessed via PRO instruments in US adult males with hemophilia A or B and a history of joint pain or bleeding. PRO instruments included EQ-5D-5L with visual analog scale, Brief Pain Inventory v2 Short Form, SF-36v2, and Hemophilia Activities List. Instrument domain and item responses were described. Responses were collected from 381 adult males with a median age of 34 years. Pain was observed across instruments and affected daily activities and quality of life. Respondents reported functional impairment that limited the kind of work and activities they participated in, with activities involving the lower extremities being most affected. A hig...
Health-related quality of life in Iranian adult men with severe hemophilia
Blood Coagulation & Fibrinolysis, 2017
Health-related quality of life (HRQOL) assessment should be part of the regular clinical assessment of persons with hemophilia. This study assessed quality of life of severe hemophilia patients (Type A) in Tehran comprehensive hemophilia care center. This cross-sectional study was done in 2016 and 84 men aged over 20 years with severe hemophilia (Type A) were assessed. All patients have been treated over 10 years at the comprehensive hemophilia care center, Iran. The HRQOL assessment includes the A36 Hemophilia-QOL questionnaire, sociodemographical and clinical characteristics. The overall HRQOL mean (WSD) in the present sample was 69.1 W 26.0 (A36Hemofilia-QoL Global Index). The mean (WSD) scores according the domains were: physical health (15.0 W 5.7), daily activities (6.7 W 3.8), joint damage (4.2 W 2.9), pain (3.0 W 1.9), social activities and relationships (10.7 W 5.8) and emotional function (9.2 W 5.0) classified moderate-to-poor state. In contrast with treatment satisfaction (4.8 W 1.6), treatment difficulties (9.5 W 3.4) and mental health (6.2 W 3.3), those were all in moderate-to-good state. Patients with higher education levels had better quality of life in the area of anxiety (P U 0.034), mental health (P U 0.007), social activities and personal relationships (P U 0.002). In general, poor quality of life of patients was 13.1%, 42.9% weak-tomoderate, 38.1% moderate-to-good and 6% good. It was shown that over 50% of patients had low-to-moderate HRQOL in the domains, such as physical health, daily activities, joint damage, pain, social activities and personal relationships. Efforts are necessary to improve their HRQOL.
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...
European journal of haematology, 2018
Health-related quality of life (HRQoL) is impaired in patients with hemophilia, however the impact in mild/moderate hemophilia B and affected women is not well characterized. To evaluate factors that affect HRQoL in adults with hemophilia B and caregivers of affected children. US adult patients and caregivers of affected children completed distinct ~1-hour online surveys including patient-reported outcome instruments. In total, 299 adult patients and 150 caregivers participated. Adults with moderate hemophilia reported poorer health status (median EQ-5D-5L index score, 0.63) than those with mild (0.73) or severe (0.74) hemophilia. Women reported greater pain severity than men on the Brief Pain Inventory v2 Short Form (median, 7.00 vs 5.00). Based on the Patient Health Questionnaire, mild or worse depression was observed in >50% of adult respondents, and depression was reported more often in those with moderate and severe hemophilia vs those with mild hemophilia. Most caregivers r...
Pain, 2009
Many people with hemophilia are affected by chronic arthritic joint pain as well as acute bleeding pain. In this cross-sectional study, 209 men with hemophilia A or B completed the Hemophilia Pain Coping Questionnaire (HPCQ), the Chronic Pain Acceptance Questionnaire (CPAQ), and the RAND 36-item Health Survey (SF-36), a measure of health-related quality of life. Multiple regression was used to test the influence of active pain coping, passive adherence coping, and negative thoughts about pain (HPCQ scales), and activity engagement and pain willingness (CPAQ scales), on physical and mental components of quality of life (SF-36 PCS and MCS scales), taking account of age, hemophilia severity, use of clotting factor, and pain intensity. Pain intensity had the main influence on physical quality of life and negative thoughts had the main influence on mental quality of life. Activity engagement and pain willingness had small but significant influences on physical and mental quality of life. Pain willingness also moderated and partly mediated the influence of pain intensity on physical quality of life, and activity engagement and pain willingness mediated the influence of negative thoughts on mental quality of life. Negative thoughts moderated and partly mediated the influence of pain intensity on mental quality of life. There was no evidence that active pain coping influenced quality of life. The findings suggest that quality of life in hemophilia could potentially be improved by interventions to increase pain acceptance and reduce negative thoughts about pain.
Background: Hemophilia is a rare inherited disorder associated with abnormal repeated bleeding and debilitating joint pain due to deficiency in coagulating factors VIII and IX. This study aimed to provide an updated account on the health-related quality of life (HRQoL) in children with hemophilia in Afghanistan. Methods: This cross-sectional study included 65 randomly selected hemophiliacs out of 350 children registered with the Afghanistan Hemophilia Patient Association (AHPA). The patients were 8-16 years old and voluntarily entered the study. Data were collected through a demographic questionnaire and a Persian version of Haemo-QoL Questionnaire (short version) for children aged 8-16 years. Results: The patients' age averaged 12.9 ± 3.9 years with a mean QoL score of 75.9 ± 17.4. The patients were suffering from hemophilia A, mostly the severe type (80%). They were born to low income families (95 %) with high illiteracy rates (>50%) and hemophilia family history (90%). Spearman test showed a significant correlation between age and QoL scores (r = 0.8, P = 0.02). One-way ANOVA indicated no significant difference between QoL scores of patients categorized based on hemophilia severity (P = 0.2, F = 1.3), family incomes (P = 0.9, F = 0.01) and parents' levels of education (P = 0.2-0.4, F = 0.82-1.3). The Cronbach alpha for the instrument was 0.82. Conclusion: Regardless of hemophilia severity, Family and Sports were the most impaired domains of QoL. Herein, we have presented the first reliable and updated data on hemophiliacs' demographic characteristics and their quality of life in Kabul.
Prevalence of Depression in Hemophilia Patients: A Cross-Sectional Study
Journal of Social Behavior and Community Health, 2024
Background: Chronic and debilitating diseases induce several psychiatric consequences. The current research determines the prevalence of depression in hemophilia patients. Methods: This is a cross-sectional study of 80 hemophilia patients referred to Mohammad Kermanshahi Hospital in Iran in 2020. The subjects were selected using the sampling method. The data collection tool includes a demographic information checklist, clinical and medical records, and Beck Depression Inventory-Second Edition (BDI-II). Data analysis was performed using frequency, percentage, and Chi-square tests. Results: The results demonstrated that the prevalence of depression in hemophilia patients was 57.5%. Furthermore, the prevalence of depression was not associated with age, education, occupation, marital status, type of hemophilia, disease severity, age of onset (i.e., disease diagnosis age), orthopedic complications, and monthly bleeding episodes (P-Values > 0.05). However, among the patients who consumed narcotics, only 25.8% were not depressed; on the other hand, 53.1% of those who did not consume narcotics were. A clear statistically significant correlation between narcotics use and the prevalence of depression was presented (P-Value < 0.01). Conclusions: The present study reveals a significant prevalence of depression among hemophilia patients, with a notable correlation observed between depression rates and the use of narcotics drugs.
2016
Background: Pain, as a crucial subsequence of joint hemorrhages in hemophilia patients, is chronic, debilitating, and distracting. This study aimed to describe and interpret pain experiences of hemophilia patients in their lives. Methods: This qualitative study with hermeneutic phenomenological approach was conducted on fourteen hemophilia patients who had been referred to a hemophilia center affiliated to Shiraz University of Medical Sciences, Shiraz, Iran. The study question was "what is the meaning of pain in hemophilia patients' lives? The data were collected through semi-structured interviews and field notes through purposeful sampling. Then, thematic analysis with van Manen's six-step methodological framework was used. MAX.QDA qualitative software package, 2010, was used to analyze the data. Results: The three main themes that emerged in this study were "alteration in physical health", "engagement in psychological problems", and "impairmen...