Health of adults living with a clinically significant haemoglobinopathy in New South Wales, Australia.

AIM: To comprehensively review the health needs of patients living with clinically significant haemoglobinopathies (thalassaemia and sickle-cell disease (SCD)) in New South Wales, Australia. METHODS: A survey-based health needs assessment was undertaken in outpatients cared for at five tertiary institutions in metropolitan and regional centres. Sixty-three of 121 adults (approximately 80-90% of adult patients with transfusion-requiring haemoglobinopathies in New South Wales) completed an in-house and commercial health-related quality assessment survey (SF-36v2). RESULTS: Subjects came from more than eight world regions, with those with SCD being more likely to be born outside of Australia than subjects with thalassaemia (P < 0.001, likelihood ratio 20.64) as well as more likely to have been refugees (26% vs 2%). The population contained socially disadvantaged subjects with 13 subjects (20.6%) having incomes below the Australian poverty line. Complications of thalassaemia were comparable to previous international reports although our subjects had a high rate of secondary amenorrhea (>12 months = 27%) and surgical splenectomy (55.6%). Use of hydroxyurea in SCD was less than expected with only 46.6% of subjects having prior use. Lack of universal access to magnetic resonance imaging-guided chelation (international best practice) was evident, although 65.5% had been able to access magnetic resonance imaging through clinical trial, or self-funding. CONCLUSIONS: Patients with SCD and thalassaemia experience considerable morbidity and mortality and require complex, multidisciplinary care. This study revealed both variance from international best practice and between specialist units. The results of this research may provide the impetus for the development of clinical and research networks to enable the uniform delivery of health services benchmarked against international standards.

Survey of practices and policies relating to the use of complementary and alternative medicines and therapies in New South Wales cancer services.

AIMS: To examine policies and practices relating to the provision, prescription and monitoring of complementary and alternative medicine and therapies (CAM) in conventional cancer services in NSW. METHODS: Self-administered questionnaire sent to directors of all 65 eligible cancer services in NSW in 2009. RESULTS: Forty-three services responded to the survey (response rate 66%). Only six (14%) services reported having formal policies about CAM. Most (n = 33, 77%) expected that patients would be asked about CAM use during their initial assessment. Eight services (19%) provided and/or prescribed CAM for patients, and most of these (n = 7) recorded details of CAM use in patients' records. Only four (9%) services permitted CAM practitioners from the community to attend inpatients, whereas 24 (56%) permitted inpatients to bring in their own CAM. Most of these services (n = 17) required medical approval for the use of CAM. Of the latter, most (n = 13) recorded the use of approved CAM, but only seven recorded use of unapproved CAM and only three refused permission to continue use of unapproved CAM. CONCLUSION: Most cancer services in NSW recognise potential CAM use by patients and expect medical staff to ask patients about their use of CAM. While few cancer services provided or prescribed CAM, over half permitted inpatients to bring their own CAM into hospital. There was little control over the use of CAM, however, and monitoring was lax. Given the wide usage of CAM by patients with cancer, this lack of control may compromise clinical outcomes, with potentially dangerous consequences.

Bloodletting: the story of a therapeutic technique.

Bloodletting has been practised in most cultures for the past two millennia. Originally widely applied, it is now only indicated for a small number of specific medical conditions. Bloodletting declined in the 19th century at a time of revolution in medical thought, and examining its decline illustrates the forces that have shaped modern medicine.