Hemophilia and sexual health: results from the HERO and B-HERO-S studies (original) (raw)
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A first Tunisian pilot study investigating sexual dysfunctions in patients with hemophilia
F1000Research
Background: Little data is actually available on sexual health problems with sexual activity, and intimacy (sexual difficulty) in patients with hemophilia (PWH). We conducted this study to determine the prevalence of sexual difficulty in PWH and to determine factors associated with erectile dysfunction (ED). Methods: Based on The International Index of Erectile Function 15 (IIEF-15) questionnaire, we evaluated ED and other sexual problems in PWH. Results: Forty-Three (43) PWH were included in our study. The mean age was 33 years. Fourteen (32.6%) respondents were identified as having severe disease. The majority (93%) suffered from erectile dysfunction. Lack of desire and orgasm was observed in 76.7% of cases each. Lack of sexual satisfaction and global satisfaction were noted in 83.7% of cases and 88.4% of cases, respectively. Among PWH, older age was associated with ED. Conclusion: Our study illustrates the need for programs to assess and improve the sexual health of PWH in compre...
American journal of hematology, 2015
The Hemophilia Experiences, Results and Opportunities (HERO) initiative assessed psychosocial issues reported by people with moderate to severe hemophilia and was led by a multidisciplinary international advisory board. This analysis reports data from young adult respondents (aged 18-30 years), including both US and overall global (including US respondents) results, and investigates treatment outcomes, quality of life, and impacts of hemophilia on relationships. More young adults in HERO received prophylaxis than on-demand treatment, although a majority reported not using factor products exactly as prescribed, and 50% of global respondents and 26% of US respondents reported issues with access to factor replacement therapy in the previous 5 years. Many young adults with hemophilia reported comorbidities, including bone/skeletal arthritis, chronic pain, and viral infections, and nearly half of young adults reported anxiety/depression. Most reported pain interference with daily activit...
European journal of haematology, 2017
The Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) initiative was launched in an effort to address specific gaps in the understanding of the psychosocial impact of mild-moderate-severe hemophilia B. The original Hemophilia Experiences, Results and Opportunities (HERO) qualitative study evaluated the needs of people with hemophilia A or B in multiple countries; however, a majority of participants had the more common moderate-severe hemophilia A. The B-HERO-S study was designed in collaboration with the hemophilia community to evaluate the needs of adults with hemophilia B and caregivers of children with hemophilia B, including affected women and caregivers of girls with hemophilia. The report presented here describes participant demographics and comorbidities, as well as treatment regimens and access to treatment. Bleeding symptoms were reported by 27% of mothers of children with hemophilia B who participated. Women were more likely than men to...
Health-related quality of life of partners of adults with haemophilia
The Journal of Haemophilia Practice, 2015
Assessment of health-related quality of life (HRQoL) in haemophilia is important in order to provide information for clinical decision-making and to verify the impact of haemophilia on patients and their partners. A crosssectional single-centre study was performed to assess the health-related quality of life (HRQoL) and burden of the disease on partners of adult patients with haemophilia. Self-reported outcomes were completed by partners and patients (SF-36, VAS of Interference); partners also completed the Caregivers' Burden Scale. A total of 108 of 150 eligible partners of adults with haemophilia (72%) participated. Mean age for partners was 44.7 years (range 20-79) and for patients 47.1 years (range 20-81). The majority of couples were married (65.7%). Couples reported being together a mean of 19.8 years and had, on average, 1.7 children. Partners of haemophilia patients across all severities reported lower HRQoL in the 'emotional role' domain of SF-36 (P=<0.041), with highest impairments observed among partners of moderately affected patients. Partners reported significantly less interference with daily life compared to patients (P<0.001). In general, partners reported low burden of haemophilia in the Caregivers' Burden Scale; 'emotional involvement' was the greatest burden in the mild and moderate group; while in the severe group 'general strain' was the greatest burden. Partners of severe haemophilia patients on prophylaxis reported, in general, good HRQoL and low burden of the disease. Partners of moderate patients reported decreased HRQoL and higher burden. Our findings may be of importance for the care of the ageing person with haemophilia (PWH).
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...
Haemophilia, 2014
Psychosocial factors have a significant impact on the quality of life of persons with haemophilia (PWH). The Haemophilia Experiences, Results and Opportunities (HERO) initiative was developed to provide a greater understanding of the psychological components which influence the lives of PWH. This article describes the HERO methodology and the characteristics of respondents. Two online surveys (one for adult PWH ≥18 years and one for parents of children <18 years with haemophilia) were developed by an international advisory board and conducted in 10 countries. The surveys included demographic and treatment characteristics, relation-ships, sexual intimacy, quality of life, barriers to treatment and sources of information. A total of 675 PWH [age, median (range) 36 (18-86 years)] and 561 parents [39 (23-68 years)] completed the survey. PWH/parents reported haemophilia A (74%/76%), B (13%/16%) or with inhibitors (13%/8%). Spontaneous joint bleeding was reported in 76%/52% of PWH/children with haemophilia A, 67%/47% with haemophilia B and 93%/76% with inhibitors. Median number of bleeds (interquartile range) was 7 (2-20) for PWH and 4 (2-10) for children in the past year. Most PWH and children were treated with factor concentrate. PWH reported arthritis (49%) and HIV/HCV infections (18%/43%) related to haemophilia. Most PWH and parent respondents had received formal education (85%/89%) and were employed full-or part-time (60%/72%). HERO is one of the largest multinational studies focused on psychosocial issues in haemophilia, including historical and treatment information that will allow for multivariate analyses of determinants of health in haemophilia.
Health-related quality of life of partners of adult haemophilia patients
The Journal of Haemophilia Practice, 2014
Assessment of health-related quality of life (HRQoL) in haemophilia is important in order to provide information for clinical decision-making and to verify the impact of haemophilia on patients and their partners. A crosssectional single-centre study was performed to assess the health-related quality of life (HRQoL) and burden of the disease on partners of adult patients with haemophilia. Self-reported outcomes were completed by partners and patients (SF-36, VAS of Interference); partners also completed the Caregivers' Burden Scale. A total of 108 of 150 eligible partners of adults with haemophilia (72%) participated. Mean age for partners was 44.7 years (range 20-79) and for patients 47.1 years (range 20-81). The majority of couples were married (65.7%). Couples reported being together a mean of 19.8 years and had, on average, 1.7 children. Partners of haemophilia patients across all severities reported lower HRQoL in the 'emotional role' domain of SF-36 (P=<0.041), with highest impairments observed among partners of moderately affected patients. Partners reported significantly less interference with daily life compared to patients (P<0.001). In general, partners reported low burden of haemophilia in the Caregivers' Burden Scale; 'emotional involvement' was the greatest burden in the mild and moderate group; while in the severe group 'general strain' was the greatest burden. Partners of severe haemophilia patients on prophylaxis reported, in general, good HRQoL and low burden of the disease. Partners of moderate patients reported decreased HRQoL and higher burden. Our findings may be of importance for the care of the ageing person with haemophilia (PWH).
TH Open, 2018
Hemophilia is a rare genetic bleeding disorder associated with pain, impaired functionality, and decreased quality of life (QoL). Several studies have focused on patient-reported outcomes of people with hemophilia (PWH) worldwide, but no such data are available for Portugal. This survey aimed to describe sociodemographic, clinical, and psychosocial characteristics of PWH of all ages in Portugal. Questionnaires were answered by self-report or by parents of children with hemophilia (proxy version). Variables assessed were sociodemographic and clinical, physical activity patterns, pain, functionality (HAL/PedHAL), QoL (A36 Hemofilia-QoL/CHO-KLAT), anxiety and depression (PROMIS), and illness perceptions (IPQ-R). One-hundred and forty-six PWH answered the survey: 106 adults, 21 children/teenagers between 10 and 17 years, 11 children between 6 and 9 years, and 8 children between 1 and 5 years. Most participants had severe hemophilia (60.3%) and type A was most commonly reported (86.3%). ...
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...
Health-Related Quality of Life and Psychological Aspects of Adults With Hemophilia in Iran
Clinical and Applied Thrombosis-Hemostasis, 2018
Hemophilia causes bleeding that may affect patients' psychological aspects and quality of life. This study aims to evaluate the impact of psychological aspects and pain on health-related quality of life (HRQoL) in adult patients with hemophilia. This cross-sectional study was conducted on 103 patients with hemophilia. Data were collected using hemophilia-specific quality of life, Depression Anxiety Stress Scales, and pain visual analogue scales. Data were analyzed using correlation coefficients, analysis of covariance, and regression analysis. The results showed that 71.7% of patients with hemophilia experienced pain on the study day. The mean score of HRQoL of patients with hemophilia was 51.09 (standard deviation ¼ 19.37). Moreover, 57.4%, 64.6%, and 44.6% of the patients had mild to severe depression, anxiety, and stress, respectively. In addition, a significant association was observed between HRQoL and depression, anxiety, and severity of pain. In the regression model, 48% of changes in HRQOL were explained by the study variables, with the severity of pain and depression being significant predictors. Therefore, attention should be paid to these aspects to improve patients' quality of life and psychosocial health.