Key issues in inhibitor management in patients with haemophilia.
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ABSTRACT:
SUBMITTER: Gomez K
PROVIDER: S-EPMC3934290 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description: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.
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Project description:BackgroundHaemophilia care is commonly provided via multidisciplinary specialized management. To date, there has been no systematic assessment of the impact of haemophilia care delivery models on patient-important outcomes.ObjectiveTo conduct a systematic review of published studies assessing the effects of the integrated care model for persons with haemophilia (PWH).Search methodsWe searched MEDLINE, EMBASE and CINAHL up to April 22, 2015, contacted experts in the field, and reviewed reference lists.Selection criteriaRandomized and non-randomized studies of PWH or carriers, focusing mainly on the assessment of care models on delivery.Data collection and analysisTwo investigators independently screened title, abstract, and full text of retrieved articles for inclusion. Risk of bias and overall quality of evidence was assessed using Cochrane's ACROBAT-NRSI tool and GRADE respectively. Relative risks, mean differences, proportions, and means and their variability were calculated as appropriate.Results27 non-randomized studies were included: eight comparative and 19 non-comparative studies. We found low- to very low-quality evidence that in comparison to other models of care, integrated care may reduce mortality, hospitalizations and emergency room visits, may lead to fewer missed days of school and work, and may increase knowledge seeking.ConclusionOur comprehensive review found low- to very low-quality evidence from a limited number of non-randomized studies assessing the impact of haemophilia care models on some patient-important outcomes. While the available evidence suggests that adoption of the integrated care model may provide benefit to PWH, further high-quality research in the field is needed.
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