The impact of testosterone therapy on quality of life in adolescents with Duchenne muscular dystrophy.

Duchenne muscular dystrophy (DMD) is the most common muscular dystrophy in childhood. It is associated with progressive muscle function decline and premature death. Long-term oral glucocorticoid use slows muscle weakness but is associated with several side effects including delayed puberty. This study assessed the impact of a 2-year incremental intramuscular testosterone regimen on quality of life (QoL) in a cohort of 15 adolescents with DMD. The Pediatric Quality of Life Inventory (PedsQL) Neuromuscular module was used to assess QoL and was completed by parent-child dyads. Semi-structured interviews were carried out to understand patient views on testosterone therapy. QoL scores increased in 10 of the 15 participants during treatment, with a mean total PedsQL score of 74.6 pre-treatment v 80.2 post treatment (p = 0.04). This was supported by comments in the semi-structured interviews. Parent-reported PedsQL scores were lower than their child's post treatment (p = 0.007). Testosterone therapy for pubertal induction was associated with an improvement in QoL and the observed physical changes during puberty played an important role. Low self-esteem was also a prevailing theme. This data supports the inclusion of testosterone therapy for pubertal induction as a Standard of Care.

Assessment of the health status and risk factors of Kham Tibetan pastoralists in the alpine grasslands of the Tibetan plateau.

The health status of Tibetan herders in the Sanjiangyuan region of the Tibetan Plateau, in southwest Qinghai Province, is assessed in this paper. The field study was conducted in 2002 in the context of a broader community development and research framework, the ultimate goal of which is to achieve an effective region-specific programme of preventative health care and training for Tibetan pastoralists. Specifically, the authors analysed the impact of a number of potentially health-related environmental and lifestyle risk factors on self-reported health indicators, with a special emphasis on mother and child health. Several health status indicators were used, including a general morbidity index and a measurement of functional incapacity due to illness in the sample households. Maternal and child health findings were alarming with high rates of miscarriage and infant loss, with no traditional midwives to assist in pregnancy and delivery. Preventable childhood illnesses were also common. Other debilitating diseases included hepatitis, tuberculosis, arthritis (gout), gall bladder disease, peptic ulcers and back pain. Finally, binary logistic regression analysis showed a significant link between general morbidity and the time it takes to obtain water. The survey findings, validated by the focus groups, indicate a real need for increased accessibility and quality of health service provision to women and men and effective preventative health strategies.

An audit of waiting times in a haematology clinic before and after the introduction of point-of-care testing.

Haematology patients are frequent attenders at haematology clinics either as a result of their illness or their treatment. We identified that waiting times in the haematology clinic were an important quality indicator for patients within the haematology service. In this study we have surveyed 50 consecutive patients in order to establish maximum waiting times in the haematology clinic. We then prospectively audited waiting times against these standards. An evaluation of the introduction of an air-tube transport system for conveying samples to the laboratory combined with the electronic transfer of results back to the clinic in an attempt to reduce waiting times has been compared with the introduction of point-of-care testing in the clinic. Point-of-care testing was introduced by transporting our backup analyser from the haematology laboratory to the clinic on a weekly basis. The tests were performed by nurse specialists who were already in the clinic and had been trained in the use of the analyser. The patient survey resulted in the establishment of a maximum waiting time of 30 min with a longer term aim to reduce this to a maximum of 20 min. The introduction of an air-tube transport system linked to electronic transfer of results, despite repeated audits, could not achieve the waiting time standard. Once point-of-care testing had been introduced, the clinic waiting times consistently achieved the standard that had been set by patients.

Introduction of computer assisted control of oral anticoagulation in general practice.

The number of patients referred to hospital clinics for monitoring of oral anticoagulation continues to rise rapidly. Introduction of computer programs for the control of oral anticoagulation improves the quality of anticoagulant control in hospital clinics. This approach has now been extended to include patients managed in general practice. Results confirm that the quality of anticoagulation can also be improved in these patients. A standard approach to anticoagulation for hospital and community based patients has also facilitated the transfer of patients on warfarin from the hospital anticoagulant clinics to the community with no deterioration in the quality of anticoagulant control. As a result, the workload in the hospital anticoagulant clinic has fallen for the first time.