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There is a lack of information on the health care of familial hypercholesterolemia (FH). The objective of this study was to compare the health care of FH in countries of the Asia-Pacific region and Southern Hemisphere. A series of questionnaires were completed by key opinion leaders from selected specialist centers in 12 countries concerning aspects of the care of FH, including screening, diagnosis, risk assessment, treatment, teaching/training, and research; the United Kingdom (UK) was used as the international benchmark. The estimated percentage of patients diagnosed with the condition was low (overall <3%) in all countries, compared with ∼15% in the UK. Underdetection of FH was associated with government expenditure on health care (ϰ = 0.667, P <.05). Opportunistic and systematic screening methods, and the Dutch Lipid Clinic Network criteria were most commonly used to detect FH; genetic testing was infrequently used. Noninvasive imaging of coronary calcium and/or carotid plaques was underutilized in risk assessment. Patients with FH were generally not adequately treated, with <30% of patients achieving guideline recommended low-density lipoprotein cholesterol targets on conventional therapies. Treatment gaps included suboptimal availability and use of lipoprotein apheresis and proprotein convertase subtilsin-kexin type 9 inhibitors. A deficit of FH registries, training programs, and publications were identified in less economically developed countries. The demonstration of cost-effectiveness for cascade screening, genetic testing, and specialized treatments were significantly associated with the availability of subsidies from the health care system (ϰ = 0.571–0.800, P <.05). We identified important gaps across the continuum of care for FH, particularly in less economically developed countries. Wider implementation of primary and pediatric care, telehealth services, patient support groups, education/training programs, research activities, and health technology assessments are needed to improve the care of patients with FH in these countries. • We identified important gaps across the continuum of care for familial hypercholesterolemia (FH) in 12 countries. • Estimated percentage of patients diagnosed with FH was low (overall <3%). • Diagnosis of FH was associated with government expenditure on health care. • Use of lipoprotein apheresis and PCSK9 inhibitors were limited in most countries. • Availability of subsidy from the health care system is important for the care of FH. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To identify the involvement and opinions of hospital medical staff in supporting medication access for paediatric home-patients. We define a home-patient as a patient not in hospital and largely cared for by primary care services where prescribing responsibility remains with the GP. METHODS: Descriptive, cross-sectional survey using an electronic questionnaire constructed and piloted with the support of hospital doctors, using LimeSurvey software (version 1.71) and sent via hospital email addresses to all medical staff (n=340) at Birmingham Children''s Hospital. The survey was tokenised to ensure that one invitation elicited one response only and sent commencing January 2010 with two reminders if necessary. The 30 point questionnaire included: demographics; frequency of prescribing; reasons for medication access problems; interaction with community pharmacists; and improving current arrangements. Responses were entered into MS Excel 2003 and SPSS v16 for analysis. Service costs are based on a fee of £26 per telephone consultations: confirmed as appropriate by the Department of Health (Commissioning Department Birmingham Children''s Hospital to D Terry, personal communication). RESULTS: Response rate of 48.5% (n=165) from 24 paediatric specialties. Nearly half of respondents (n=81) wrote urgent prescriptions for home-patients in a 3 month period. Respondents providing this service describe the clinical risk to patients if they did not provide this service as: small 9.2% (n=7); moderate 46.1% (n=35); high 35.5% (n=27); very high 9.2% (n=7). Respondents were asked to identify the most likely reason for medication access problems from a list of possible reasons with the following results: GP issue 44.5% (n=65); Communication issue 17.1% (n=25); Carer issue 13.0% (n=19); Pharmacy issue 6.2% (n=9); Formulation issue 1.4% (n=2). Respondents were asked to assess the likelihood (very unlikely, quite unlikely, sometimes, quite likely, very likely) of a list of possible reasons why GPs may decline to provide repeat prescriptions for children with the following results for very likely or quite likely: clinical concerns 56% (n=84); communication issues 52% (n=78); PCT influence 47.3% (n=71). Annual service costs for this institution are estimated as £120 000. CONCLUSION: Hospital doctors act frequently to assist paediatric patients outside hospital who are largely cared for by primary care services (home-patients) to obtain the medicines they need. This activity is not covered by existing contractual arrangements between the hospital and PCTs. The most common reason for this activity cited by respondents is GP issues, prompted by clinical concerns. Require GPs to prescribe all continuing medicines was considered to be a high or very high benefit by over 60% of respondents: a view similar to that of hospital nurses.1Hospital and community pharmacists will benefit from being aware of this activity, perceived clinical importance and service costs. [ABSTRACT FROM AUTHOR]