Hemophilia Experiences, Results And Opportunities Research Articles

Sexual issues in people with haemophilia: Awareness and strategies for overcoming communication barriers.

IntroductionThe Haemophilia Experiences, Results and Opportunities (HERO) Study identified sexual health as an important psychosocial issue affecting people with haemophilia (PWH) worldwide. However, sexual health is inadequately addressed at haemophilia treatment centres (HTCs), because PWH and healthcare professionals (HCPs) experience barriers to broaching the subject. There is a clear need for HCP training to support communication in this area and improve comprehensive care.AimThe Sexual Health: Strategies for Effective Communication pilot programme was trialled in Canada to assess HCP readiness and ability to discuss sexual health issues with PWH and test communication tools to facilitate these conversations.MethodsThe pilot programme consisted of two 3‐h sessions attended by seven HCPs from Calgary's Alberta Children's and Foothills Hospitals. The sessions included lectures and case scenarios and explained the check‐in–affirm–clarify–answer and head–heart–body tools designed by the Centre for Sexuality to aid communication. The pilot was evaluated through discussions and an online questionnaire.ResultsThe pilot was well received by all HCP participants. Questionnaire data showed improvements in participants’ knowledge, skills and comfort level in conducting sexual health discussions. Greatest improvements were noted in knowledge (100% ‘good’ or ‘excellent’ after the pilot, compared with 29% beforehand). Importantly, 86% felt that the material presented would be applicable in clinical practice.ConclusionThe Canadian pilot demonstrated the effectiveness of the proposed educational programme. The underlying principles could be adapted to similar programmes for other HTCs to facilitate sexual health discussions.

Hemophilia and sexual health: results from the HERO and B-HERO-S studies.

BackgroundSexual health plays a primary role in quality of life (QoL) for many people, including those with hemophilia; however, there is little information available about sexual relationships and satisfaction in patients with hemophilia.MethodsTo address this issue, the Hemophilia Experiences, Results and Opportunities (HERO) and the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) studies included questions from the Male Sexual Health Questionnaire (MSHQ).ResultsAlthough these data were not statistically analyzed for comparisons between the 3 populations (HERO, HERO US only, and B-HERO-S), in general, participants in the HERO survey appeared to be more satisfied with their sexual relationship than participants in the B-HERO-S survey. In addition, many patients, especially those outside the United States, reported that they had not discussed sexual health with their doctor or other members of the hemophilia treatment center team. While the topic of sexual health has been infrequently explored in men with hemophilia, this is the first time it has been investigated in women with hemophilia.ConclusionThe results of these studies demonstrate that the impact of hemophilia extends to intimacy and suggest the need for large-scale studies in additional countries to explore further the factors associated with sexual health issues in people with hemophilia.

Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers.

The international Haemophilia Experiences, Results and Opportunities (HERO) study assessed the psychosocial aspects of life for people with haemophilia (PWH) and their caregivers in several countries. Brazil was not included in this initiative. An observational, multicentre, cross-sectional study was performed involving PWH (moderate-to-severe haemophilia) and their caregivers, from November 2014 to July 2015. The primary objective was to quantify the extent of the primary psychosocial factors affecting PWH in their everyday life. Descriptive statistics and comparisons between Brazilian and global respondents are presented. A total of 100 adult male PWH and 100 caregivers (responding on behalf of their oldest affected child aged <18years) completed the survey. Sixty-eight per cent of the PWH had haemophilia A without inhibitors. Chronic pain and hepatitis C were the most common conditions related to haemophilia. On the EQ-5D assessment, 64% of PWH reported extreme/moderate pain. Treatment for depression or anxiety was reported by 18% of PWH and by 29% of caregivers. There was a lower employment rate for PWH in Brazil, compared to the countries included in the original HERO survey (51% vs 60%); 71% of PWH stated that haemophilia has a negative impact on their work. Over the previous 5years, 58% of PWH and 68% of caregivers did not have difficulties in obtaining the concentrated factor for treatment. Our study presents an overview of the psychosocial aspects of life with haemophilia in Brazil, providing a basis for health policy decisions and may further improve comprehensive care for PWH.

The demographics, treatment characteristics and quality of life of adult people with haemophilia in China - results from the HERO study.

Haemophilia management in China needs to be further developed. To further improve the quality of life (QoL) of people with haemophilia (PWH) in China, it is important to investigate the peculiarities of China as compared to other countries. The primary objective of the Haemophilia Experiences, Results and Opportunities (HERO) project was to quantify the impact of key psychosocial factors affecting PWH. This article presents the demographics, treatment characteristics, and QoL of adult PWH in China as compared with the results of the other nine countries participating in the HERO study. This was a web- (except in Algeria) and questionnaire-based survey conducted in 10 countries. A total of 110 adult PWH from China and 565 from other countries completed the questionnaire. Compared with other countries, respondents in China reported: lower rate of employment (45.6% vs. 63.1%); lower percentages of being treated by prophylaxis (4.1% vs. 36.8%), being treated always at home (27.8% vs. 54.3%) and following treatment recommendation as instructed (6.2% vs. 40.5%); greater difficulty in obtaining replacement factor products (97.3% vs. 29.6%) and visiting their treatment centre (60.9% vs. 26.4%); more annual bleeds requiring treatment (mean: 29.4/year vs. 15.4/year); lower mean self-evaluated disease control score (5.5 vs. 7.7), EQ-5D index (0.71 vs. 0.75) and visual analogue scale (7.1 vs. 7.5) scores. Employed PWH in China had a better self-reported generic QoL than those unemployed. The study suggests that there is a major need for further improvement of both medical care and ongoing psychosocial support for PWH in China.

Challenges in transition to adulthood for young adult patients with hemophilia: Quantifying the psychosocial issues and developing solutions.

Challenges in transition to adulthood for young adult patients with hemophilia: Quantifying the psychosocial issues and developing solutions.

Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18-30 years) with hemophilia.

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 activities in the past 4 weeks, although a majority reported participating in lower-risk activities and approximately half in intermediate-risk activities. Most young adults were very or quite satisfied with the support of partners/spouses, family, and friends, although roughly one-third reported that hemophilia affected their ability to develop close relationships with a partner. A majority of young adults reported that hemophilia has had a negative impact on employment, and 62% of global respondents and 78% of US respondents were employed at least part-time. Together these data highlight the psychosocial issues experienced by young adults with hemophilia and suggest that increased focus on these issues may improve comprehensive care during the transition to adulthood.

Haemophilia Experiences, Results and Opportunities (HERO) study: treatment-related characteristics of the population.

The HERO (Haemophilia Experiences, Results and Opportunities) quantitative surveys collected information on characteristics and perceptions of adult persons with haemophilia (PWH) and parents of children with haemophilia. The aim of this article is to describe the perceptions of PWH and parents on psychosocial aspects related to treatment. Two online surveys (one for PWH, one for parents) were conducted in 10 countries. Among 675 PWH respondents, 77% reported having responsibility for their own care; 72% of 561 parent respondents had the main responsibility for their son. PWH were most commonly treated on demand (45% of 648 adults using factor concentrate), with 32% on regular prophylaxis and 23% treated on demand with short-term prophylaxis (e.g. for sports/physiotherapy). Children were most often treated with prophylaxis (65% of 549 children using factor concentrate), with 26% treated on demand and 8% treated on demand with short-term prophylaxis. Factor was generally used as instructed at home. Some respondents (41% PWH; 30% parents) had difficulties/concerns with factor availability/affordability. PWH reported more bleeds in the last 12 months than parents reporting their son's bleeds (mean 17.8 vs. 8.7). Both PWH and parents generally perceived that overall, their (their son's) haemophilia was well controlled. Results differed by country. The HERO study captured new, patient-based data regarding many facets of life relevant to PWH, including treatment. The information conveyed in this article largely represents new insights regarding perceptions of treatment and provides initial benchmark statistics for further research.

Haemophilia Experiences, Results and Opportunities (HERO) Study: influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia.

Evidence delineating the effects of haemophilia on interpersonal relationships is sparse and largely outdated, failing to reflect the impact of current treatment strategies. HERO (Haemophilia Experiences, Results and Opportunities) was commenced to garner a more comprehensive understanding of psychosocial issues facing persons with haemophilia (PWH). This article describes the findings of the quantitative HERO survey relating to the influence of haemophilia on interpersonal relationships of adult PWH, and parents/caregivers of children with haemophilia. Separate questionnaires were completed by adult PWH and parents of minor children from 10 countries, including satisfaction with support from partners, family, friends and other social contacts; disclosure of haemophilia and carrier status and family dynamics. A total of 675 PWH and 561 parents completed the survey. Over half of PWH (57%) and parents (84%) were married. Most PWH were satisfied with support from partners (94%), family (90%) and friends (85%), with lower percentages reported among those with inhibitors. Most parents were likewise satisfied with support from partners (88%) and family (83%). Whereas PWH were reticent to disclose their diagnosis beyond family and friends, parents were more likely to share their son's diagnosis, and most were satisfied with the support from their son's peers (74%), teachers (83%) and other adults in supervisory roles (85%). PWH and parents surveyed were satisfied overall with the support they received from partners, family, friends and social contacts. Relationships are affected by haemophilia in various ways, and particularly affected in terms of disease burden, age and social life.

Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics

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, relationships, 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.

PSY86 - Associations between inhibitors, treatment regimen, and bleed frequency and health care practitioner utilisation in the haemophilia treatment centre (HTC): Global results from the haemophilia experiences, results and opportunities (HERO) study

PSY86 - Associations between inhibitors, treatment regimen, and bleed frequency and health care practitioner utilisation in the haemophilia treatment centre (HTC): Global results from the haemophilia experiences, results and opportunities (HERO) study

PSY87 - Associations between negative impact on employment or relationships and haemophilia treatment centre (HTC) and health care practioner utilisation: Global results from the haemophilia experiences, results and opportunities (HERO) study

PSY87 - Associations between negative impact on employment or relationships and haemophilia treatment centre (HTC) and health care practioner utilisation: Global results from the haemophilia experiences, results and opportunities (HERO) study

Hemophilia Experiences, Results and Opportunities (HERO) Study: US Respondent Demographics and Impact of Diagnosis On Career and Lifestyle Decisions and Quality of Life

AbstractAbstract 4244 Objectives:The HERO initiative was developed to increase understanding of the psychosocial issues impacting people with moderate-severe hemophilia (PWH). Methods:Following ethics review and informed consent, 675 adult PWH (≥ 18) and 561 parents of children with hemophilia (CWH) in 10 countries completed ∼45 min psychosocial assessment including EQ-5D, a health-related visual analog scale (0–100, coded as an eleven-point categorical response), and a 7 point scale assessing pessimistic (1) to optimistic (7) outlook on the next 5 years. US participants were recruited through National Hemophilia Foundation’s eNote distribution and Facebook. Results:The 189 US PWH had a median (range) age of 35(18–74). The 190 US parents of CWH had a median (range) age of 37(23–59) years; mean age of oldest son <18 was 8.6. Most PWH/parents reported hemophilia A (111/126, 59%/66%) with 45/18 (24%/9%) reporting inhibitors. Most parent respondents were female (79%) and responsible for their son’s care (75%). PWH reported bone/arthritis (48%), pain (39%), HCV 34%, HIV 16%, and psychological (35%) comorbidities related to hemophilia; 40% reported cardiovascular conditions. PWH/parents completed full time education (84%/88%) or were in school (12%/6%). Most PWH/parents were employed full- or part-time (72%/72%). Of PWH, 13% reported long-term disability and 24% disability-related benefits. Many PWH/parents (44%/30%) reported their selection of a job took into account caring for their/their son’s hemophilia; few reported no impact on choice of job (25%/22%) or working life (17%/33%). Most PWH/parents reported office-based jobs (57%/47%) or light-to-moderate manual labor (23%/44%). Many felt current treatment allowed them to work in most situations (36%/43%). Negative impacts included voluntarily leaving a job (30%/19%), not being hired (21%/7%), not being promoted (17%/12%) or losing a job (16%/11%). Adult PWH tended to have a lower risk profile for current activities/sports than CWH (low/medium/high risk: PWH 81%/49%/17% vs. CWH 67%/66%/40%). Common activities for PWH/CWH included: swimming (28%/46%), fishing (38%/34%), walking (33%/24%), golf (29%/19%), cycling (22%/29%), gym (23%/11%), and Frisbee (17%/22%). The mean (SD) EQ-5D index of PWH was 0.763 (0.195), median 0.800. While fewer older patients were surveyed, they had lower EQ-5D indexes:<3535–4445–5455–6465–74EQ-5D Index0.770 (0.181)0.806 (0.173)0.699 (0.243)0.600 (0.219)0.651 (0.268)Overall, 42% rated their health 80–100 (see figure). The percent rating 80–100 was lower for older PWH (<30, 53%; 31–40, 45%; 41+, 24%), those with inhibitors (24% vs. 48%), spontaneous bleeds in the past 12 months (39% vs. 61%), musculoskeletal comorbidities (36% vs. 78%) and those unemployed (20% vs. 47%). [Display omitted] On the EQ-5D components, 71% reported moderate or extreme pain or discomfort. Within the prior 4 weeks, 92% reported pain interfered with their daily life (54% moderate-extreme pain). Moderate-extreme interference was more common in PWH aged 41+ (76% vs. 46%), and with inhibitors (62% vs. 51%) or musculoskeletal complications (65% vs. 7%). Of the 92% reporting pain interfering with functioning, 43% reported only bleed-related pain, 17% continuous pain, and 36% continuous pain worsened by bleeds. The mean/median outlook on the next five years was optimistic for PWH (5.32/6) and parents (5.82/6) and didn’t vary by age group. Mean ratings were lower for PWH with inhibitors (4.73 vs. 5.51) and not working (4.81 vs. 5.49). PWH/parents with inhibitors (56%/56%) more than those without inhibitors (46%/35%) agreed, “My whole life revolves around [my/my son’s] hemophilia”. Conclusions:HERO provides a unique database with demographic and medical/treatment data collected to facilitate in-depth study of psychosocial issues. Despite physical disability and challenges of caring, adult PWH and parents of CWH respectively overcome significant barriers to maintain employment. Adult PWH actively participate in low-medium risk activities, while CWH participate more fully. Using generic tools to allow comparability, impairment of QoL was consistent with other hemophilia studies, lower than in the general population and similar to normative data in elderly populations with chronic/disabling conditions. This was reflected in often constant pain impacting daily life. Adult PWH and parents of CWH were none-the-less generally optimistic about the future. Disclosures:Nugent:Novo Nordisk: Membership on an entity's Board of Directors or advisory committees. Guelcher:Novo Nordisk: Membership on an entity's Board of Directors or advisory committees. Forsyth:Novo Nordisk: Consultancy, Membership on an entity's Board of Directors or advisory committees. Frick:National Hemophilia Foundation: Employment. Rice:National Hemophilia Foundation: Employment. Iorio:Pfizer: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; NovoNordisk: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Baxter: Membership on an entity's Board of Directors or advisory committees; Bayer: Research Funding; BioGen Idec: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau. Wisniewski:Novo Nordisk Inc.: Employment. Cooper:Novo Nordisk Inc.: Employment.