Opportunities and Challenges in Establishing a Cohort Study: An Example From Cleft Lip/Palate Research in the United Kingdom.

BACKGROUND: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders. OBJECTIVE: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate. RESULTS: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families. CONCLUSIONS: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.

Delivery of child development services by videoconferencing: a review of four years' experience in Queensland.

In 2001 the Child Development Unit (CDU) in Brisbane piloted a series of monthly multidisciplinary case discussions via videoconference in the area of child development. During 2001 two sessions were provided; during 2004 there were 40. The substantial growth in 2004 was due to the expansion of child development services to include special interest group meetings and multipoint case conference meetings. In 2004, a total of 49 h of videoconferencing was conducted. The average session length was 75 min. Education and training sessions were delivered to 32 hospitals and health centres in Queensland and northern New South Wales. The maximum number of sites involved during a single videoconference was 25. The average number of attendees for each videoconference was five per site, including allied health staff, nurses and paediatricians. The delivery of child development services via videoconference has been shown to be useful in Queensland, especially for allied health staff working in regional and remote areas. The growth of the programme indicates its acceptance as a mainstream child development service in Queensland.

Treatment of visual neglect in elderly patients with stroke: a single-subject series using either a scanning and cueing strategy or a left-limb activation strategy.

BACKGROUND AND PURPOSE: The presence of unilateral visual neglect (UVN) may adversely affect functional recovery, and rehabilitation strategies that are practical for use in clinical settings are needed. The purpose of this study was to evaluate the use of 2 approaches to reduce UVN in people who have had strokes. SUBJECTS: Seven elderly patients with stroke and severe left UVN, aged 60 to 85 years, were recruited from a stroke rehabilitation unit. METHODS: A nonconcurrent, multiple-baselines-across-subjects approach, with an A-B-A treatment-withdrawal single-subject experimental design, was used. Five subjects received a scanning and cueing approach, and 2 subjects received a contralesional limb activation approach, for 10 one-hour sessions. In the former approach, active scanning to the left was encouraged by the therapist, using visual and verbal cues and a mental imagery technique, during reading and copying tasks and simple board games. In the latter approach, functional and goal-oriented left upper-limb activities in neglected hemispace were encouraged. Unilateral visual neglect was examined by a masked (blinded) examiner throughout all phases using the Star Cancellation Test, the Line Bisection Test, and the Baking Tray Task. Data were analyzed using visual and inferential statistical techniques. RESULTS: Both subjects who received limb activation and 3 of the 5 subjects who received scanning and cueing showed a reduction in UVN in one or more tests. This improvement was maintained during the withdrawal phase. DISCUSSION AND CONCLUSION: Both approaches had a positive effect of reducing aspects of UVN in some subjects relative to no-treatment baselines. However, causality cannot be assured in the absence of controls. The approaches are practical for use in rehabilitation settings. These procedures warrant further replication across subjects, settings, and therapists.

Child development services: a multidisciplinary approach to professional education via videoconference.

We have piloted a monthly series of multidisciplinary case discussions via videoconference in the area of child development. The project provided a forum for clinical discussion of complex cases, peer review, professional development and networking for allied health professionals and paediatricians. Six sites in Queensland participated in the project; each site presented at least one case for discussion. The videoconferences ran for 90 min each and were attended by an average of 26 health professionals. The response rate for a questionnaire survey was 71%. The respondents rated the effectiveness of case summaries and the follow-up newsletter very positively. Despite some early difficulties with the technical aspects of videoconferencing, the evaluation demonstrated the participants' satisfaction with the project and its relevance to their everyday practice.

Evaluation of a test battery for hemineglect in elderly stroke patients for use by therapists in clinical practice.

Hemineglect is not a single entity, and the syndrome has a number of sensory and motor manifestations. The purpose of this study was a) to measure performance of healthy elderly subjects on a battery of validated tests for hemineglect in order to establish appropriate cut-off scores and b) to assess performance of a large sample of elderly stroke patients in a rehabilitation unit, using the same battery. Tests were selected to identify rate of occurrence of hemineglect in visuo-spatial, representational, pre-motor and personal modalities. The battery was administered to 107 patients with right or left sided brain damage and 43 age-matched controls. Results showed that 39.2% right-sided brain damage), were 'neglecters', scoring below cut-off in one or more tests. Star Cancellation and Line Bisection showed the highest relative sensitivity for visuo-spatial neglect (76.4%) 'Baking Tray Task', the 'Exploratory Motor Task', and utilisation of common objects test for personal neglect are additionally suggested for use in the clinical situation. 'Copying a Daisy' and clock-drawing are not recommended due to low sensitivity and subjectivity in scoring respectively.