Common themes and challenges in hemophilia care: a multinational perspective.

OBJECTIVE: To identify ways that provision of hemophilia care can be maximized at the local level, irrespective of available resources or cultural or geographic challenges. METHODS: The SHIELD group used its multinational experience to share examples of local initiatives that have been employed to deliver optimal hemophilia care. RESULTS: The examples were reviewed and categorized into four key themes: guidelines and algorithms for delivery of care; collaboration with patients and allied groups for care and education; registries for the monitoring of treatment and outcomes and health care planning and delivery; and opportunities for personalization of care. These themes were then incorporated into a road map for collaborative care in hemophilia that reflected the contribution of best practice. DISCUSSION: Differing healthcare reimbursement systems, budgetary constraints, and geographical and cultural factors make it difficult for any country to fully deliver ideal care for people with hemophilia. The SHIELD approach for collaborative care provides illustrative examples of how four key themes can be used to optimize hemophilia care in any setting. ABBREVIATIONS: AHCDC: Association of Hemophilia Clinic Directors of Canada; AICE: Italian Association of Hemophilia Centres; ATHN: American Thrombosis and Hemostasis Network; EAHAD: European Association for Haemophilia and Allied Disorders; EHC: European Hemophilia Consortium; FIX: Coagulation Factor IX; FVIII: Coagulation Factor VIII; HAL: Haemophilia Activity List; HJHS: Haemophilia Joint Health Score; HTC: Hemophilia Treatment Centre; HTCCNC: Hemophilia Treatment Centre Collaborative Network of China; MASAC: Medical and Scientific Advisory Council; MDT: Multidisciplinary team; NHD: National Haemophilia Database; NHF: National Hemophilia Foundation; PK: Pharmacokinetics; POCUS: Point of care ultrasound; PWH: People with haemophilia; SHIELD: Supporting Hemophilia through International Education, Learning and Development; WFH: World Federation of Hemophilia.

Supply and demand for hemophilia treatments-Systems-based approaches to mitigate the risk.

Treatment of hemophilia consists of replacement of the missing coagulation factor, either prophylactically or at the time of injury or bleeding. Because of the high cost of these products, which can present a barrier to care, different procurement strategies have been developed at national and regional levels. The emergence of novel therapeutic agents adds complexity to these strategies. This paper examines the benefits and challenges of these strategies, with primary reference to the Canadian context and a consideration of the concepts of value-based care.

Penny wise, pound foolish: an assessment of Canadian Hemophilia/inherited bleeding disorder comprehensive care program services and resources.

INTRODUCTION: A network of 25 haemophilia/inherited bleeding disorder comprehensive care centres was established in Canada in the 1970s and 1980s. In 2007, standards of care, focused on the structural and resource requirements necessary to effectively provide optimal care, were adopted. AIM: Assess how human and physical resources affect centres' capacity to attain standards of care. METHODS: The Canadian Hemophilia Society (CHS), with the support of the Association of Hemophilia Clinic Directors of Canada (AHCDC), undertook the assessment. Health care providers were interviewed in person by lay CHS volunteers and staff. A comprehensive patient satisfaction survey was mailed to a representative cross-section of patients/caregivers. RESULTS: The CHS observed that, despite competent and dedicated staff, many of the programmes are experiencing serious resource deficiencies. Twenty-three of the 25 programmes lack resources in one or more of the following disciplines: haematology, nursing, physiotherapy, social work and clerical/data entry. In nine of the 25 programmes, no resources are allocated to certain core disciplines, notably physiotherapy and social work. Key standards of care, including regular health assessments and close monitoring of home infusion with factor concentrates, are not always respected. Nevertheless, a high level of satisfaction was observed among patients and their caregivers. The study also discovered that clotting factor concentrates constitute 90-95% of the total cost of care while all other aspects of care delivery represent only 5-10%. CONCLUSIONS: Under-funding of programmes and suboptimal monitoring of valuable clotting factor concentrate utilization and reporting are both 'penny-wise' and 'pound-foolish'. A formal accreditation process is needed.

Head injuries related to the use of baby walkers.

To determine what proportion of head injuries in children under 24 months of age who presented to an emergency department were related to the use of baby walkers, we reviewed the charts of 52 such children. Walkers were involved in 42% of the head injuries in the children under 12 months of age and in none of those in the children aged 12 to 24 months. All walker-related injuries, including skull fractures in three children, involved stairs (p less than 0.001). Questionnaires were also sent to all families with children aged 3 to 18 months attending a private pediatric practice to determine the prevalence of falls involving baby walkers among these children and the factors associated with such falls. Of the 152 responding families 82% reported using or having used a walker. Thirty-six percent of the families reported that their child had a fall while in a walker, with 8.8% of the falls resulting in contact with a doctor. Walker-related falls were directly associated with time spent in the walker (p less than 0.001) and with a previous fall from the walker by an older sibling (p less than 0.03). Since there is no demonstrated benefit of walkers, their use should not be encouraged, and parents should be advised of their potential danger.

The susceptibility of adolescent girls to rubella. Observations on 297 girls in Toronto.

Since serum rubella H-I antibody titers of 297 adolescent girls showed 25.3 per cent to be susceptible, we support the recommendation that all susceptible girls be immunized, provided of course that after individual evaluation there is no risk of pregnancy at the time of immunization or in the ensuing two months.