Clinical research: making it work in the outpatient dialysis facility.

Performing clinical research in the outpatient dialysis facility can be very challenging. Research protocols define time-specific and detailed procedures to be performed. In dialysis units where staff members are responsible for the delivery of life-sustaining therapy to an aging end stage renal disease patient population with multiple co-morbidities, these requirements can easily be considered too burdensome to be implemented successfully. In the authors'facility, clinical research has been successfully implemented with a close team approach supported by a dedicated research group and unit staff

Parental experiences of the newborn hearing screening programme in Wales: a postal questionnaire survey.

OBJECTIVES: To evaluate parental experiences and satisfaction with Newborn Hearing Screening Wales, which was set up over 18 months in 2003-04 to provide an all-Wales neonatal hearing screening programme. METHODS: A postal questionnaire was developed and piloted, then distributed to mothers of babies who had recently been screened. RESULTS: General satisfaction levels were high. Women were less satisfied with the information provided than with staff or the test itself. Women whose babies had had no clear responses on initial screening were significantly more likely to feel that the test upset their baby (P<0.05) and that there were things they were unhappy with about the screening programme (P<0.01). These women also reported significantly more anxiety after screening than women whose babies had clear initial responses (P<0.01). CONCLUSIONS: The survey results provide a baseline against which future user satisfaction surveys of neonatal hearing screening programmes can be evaluated. They highlight significant differences in user satisfaction between those whose babies had clear responses on initial screening and those who did not, and point to areas where improvement may be possible.

Informed choice in screening programmes: do leaflets help? A critical literature review.

BACKGROUND: Screening programmes aim to maximise population benefit by maximizing uptake but must also allow informed choice about participation. Many programmes provide potential participants with information leaflets. This article reviews studies of the effectiveness of leaflets in promoting informed choice in screening. METHODS: I searched 15 electronic databases and the websites of UK screening programmes, searched the bibliographies of identified studies and contacted experts in the field. Randomized controlled trials (RCTs) and controlled clinical trials where an attempt had been made to determine the contribution of leaflets to the exercise of informed choice in screening decisions were included. RESULTS: I identified nine trials from various screening programmes. Outcome measures included knowledge, attitudes to screening, intention to be screened, uptake, anxiety, satisfaction with decision-making, discussions about screening with care providers and agreement that enough information had been provided to allow informed choice. Most studies demonstrated that providing written information increased knowledge, but evidence that this promoted informed choice was poor. CONCLUSIONS: Research into informed choice in screening is hampered by the lack of agreement about its definition and measurement. The most effective way for screening programmes to achieve informed choice is unclear. Programmes should not rely solely on providing written information but should explore additional ways to promote informed choice.