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This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

Daily calcitriol therapy has been reported to improve linear growth in children with renal bone disease, and 1,25-dihydroxyvitamin D is a key regultor of chondrocyte proliferation and differentiation. Whereas large intermittent doses of calcitriol can lower serum parathyroid hormone (PTH) levels and reverse the skeletal changes of secondary hyperparathyroidism, the impact of intermittent calcitriol therapy on linear growth in children is not known. Thus, we studied 16 pre-pubertal patients with bone biopsy-proven secondary hyperparathyroidism who completed a 12-month prospective clinical trial of intermittent calcitriol therapy. Biochemical results and growth data obtained during intermittent calcitriol therapy were compared to values determined during the preceding 12 months of daily calcitriol therapy in each study subject; changes in bone histology were assessed after one year of intermittent calcitriol therapy. Z-scores for height did not change during 12 months of daily calcitriol therapy. Although the skeletal lesions of secondary hyperparathyroidism improved in most patients, Z-scores for height decreased from -1.8 +/- 0.32 to -2.0 +/- 0.33, P < 0.01, during intermittent calcitriol therapy. The largest reductions were seen in patients who developed adynamic bone lesions after 12 months of treatment. Delta Z-scores for height correlated with serum PTH, r = 0.71, P < 0.01, and alkaline phosphatase levels, r = 0.67, P < 0.01, during intermittent calcitriol therapy but not during daily calcitriol therapy. The data suggest that high dose intermittent calcitriol therapy adversely affects linear growth, particularly in patients with the adynamic lesion. The higher doses of calcitriol or the intermittent schedule of calcitriol administration may directly inhibit chondrocyte activity within growth plate cartilage of children with end-stage renal disease.

Psoriasis needs to be recognized and managed as a complex long-term condition with emotional and social needs that are addressed alongside appropriate diagnosis and regular reviews of treatments which may involve referrals to specialist care.

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AimsThis article reports a randomized controlled trial of lay-facilitated angina management (registered trial acronym: LAMP).BackgroundPreviously, a nurse-facilitated angina programme was shown to reduce angina while increasing physical activity, however most people with angina do not receive a cardiac rehabilitation or self-management programme. Lay people are increasingly being trained to facilitate self-management programmes.DesignA randomized controlled trial comparing a lay-facilitated angina management programme with routine care from an angina nurse specialist.MethodsParticipants with new stable angina were randomized to the angina management programme (intervention: 70 participants) or advice from an angina nurse specialist (control: 72 participants). Primary outcome was angina frequency at 6 months; secondary outcomes at 3 and 6 months included: risk factors, physical functioning, anxiety, depression, angina misconceptions and cost utility. Follow-up was complete in March 2009. Analysis was by intention-to-treat; blind to group allocation.ResultsThere was no important difference in angina frequency at 6 months. Secondary outcomes, assessed by either linear or logistic regression models, demonstrated important differences favouring the intervention group, at 3 months for: Anxiety, angina misconceptions and for exercise report; and at 6 months for: Anxiety; Depression; and angina misconceptions. The intervention was considered cost-effective.ConclusionThe angina management programme produced some superior benefits when compared to advice from a specialist nurse.

BackgroundPsoriasis is a chronic, inflammatory skin disease affecting approximately 2% of the UK population and is currently incurable. It produces profound effects on psychological wellbeing and social functioning and has significant associated co-morbidities. The majority of patients with psoriasis are managed in primary care, however in-depth patient and GP perspectives about psoriasis management in this setting are absent from the literature. This article reports an in-depth study which compares and contrasts the perspectives of people with psoriasis and of GPs on the challenges of managing psoriasis in primary care.MethodsIn-depth, qualitative semi-structured interviews were conducted with a diverse sample of 29 people with psoriasis and 14 GPs. Interviews were coded using principles of Framework Analysis to enable a comparison of patient and practitioner perspectives on key issues and concepts arising from the data.ResultsPatients perceived GPs to be lacking in confidence in the assessment and management of psoriasis and both groups felt lacking in knowledge and understanding about the condition. While practitioners recognised that psoriasis has physical, emotional and social impact, they assumed patients had expertise in the condition and may not address these issues in consultations. This resulted in patient dissatisfaction and sub-optimal assessment of severity and impact of psoriasis by GPs. Patients and GPs recognised that psoriasis was not being managed as a complex long-term condition, however this appeared less problematic for GPs than for patients who desired a shared management with their GP incorporating appropriate monitoring and timely reviews.ConclusionsThe research suggests that current routine practice for psoriasis management in primary care is mismatched with the expressed needs of patients. To address these needs, psoriasis must be recognised as a complex long-term condition involving exacting physical, psychological and social demands, co-morbidity and the development of new treatments.General practitioners need to improve both their knowledge and skills in the assessment and management of psoriasis. This in turn will facilitate management of the condition in partnership with patients. Commissioning multi-disciplinary services, which focus on long-term impacts on wellbeing and quality of life, might address current deficits in care.

Aims To assess whether the Expert Patient Programme (EPP), adapted for people with Type 2 diabetes, can be used to promote healthy eating to improve glycaemic control.Methods Adults with Type 2 diabetes (n = 317) were randomized to receive either a diabetes-specific EPP (n = 162) or individual one-off appointments with a dietitian (control group) (n = 155). The diabetes-specific EPP followed the standard National Health Service programme although all participants in the group had diabetes only, rather than a mix of chronic conditions. Participants attended a group session for 2 h once per week for 6 weeks. In addition, a final seventh-week 2-h session was included that was specific to issues concerning diabetes. Outcomes were assessed at baseline, 6 and 12 months.Results There were no statistically significant differences between the control and the intervention group in any of the clinical outcomes measured. There was no significant difference between the groups in any dietary outcome. There was a higher starch intake in the EPP group, although this did not reach statistical significance (effect size for starch adjusted for baseline values 8.8 g; 95% CI )1.3 to 18.9). There was some loss of participants between baseline measurement and randomization, although this did not appear to have had an important impact on baseline balance.