Cleft Palate Outcomes and Prognostic Impact of Palatal Fistula on Subsequent Velopharyngeal Function—A Retrospective Cohort Study

Objective: To assess outcomes from cleft palate repair and define the level of impact of palatal fistula on subsequent velopharyngeal function. Design: A retrospective cohort study. Setting: A regional specialist cleft lip and palate centre within UK. Patients, Participants: Non-syndromic infants born between 2002 and 2009 undergoing cleft palate primary surgery by a single surgeon with audited outcomes at 5 years of age. Four hundred and ten infants underwent cleft palate surgery within this period and 271 infants met the inclusion criteria. Interventions: Cleft palate repair including levator palati muscle repositioning with or without lateral palatal release. Main Outcome Measures: Postoperative fistula development and velopharyngeal function at 5 years of age. Results: Lateral palatal incisions were required in 57% (156/271) of all cases. The fistula rate was 10.3% (28/271). Adequate palatal function with no significant velopharyngeal insufficiency (VPI) was achieved in 79% of patients (213/271) after primary surgery only. Palatal fistula was significantly associated with subsequent VPI (risk ratio = 3.03, 95% confidence interval: [1.95, 4.69], p-value < 0.001). The rate of VPI increased from 18% to 54% when healing was complicated by fistula. BCLP repair complicated by fistula had the highest incidence of VPI (71%). Conclusions: Cleft palate repair with levator muscle repositioning is an effective procedure with good outcomes. The prognostic impact of palatal fistula on subsequent velopharyngeal function is defined with a highly significant three-fold increase in VPI. Early repair of palatal fistula should be considered, particularly for large fistula and in BCLP cases

Centre-level variation in treatment and outcomes and predictors of outcomes in 5-year-old children with non-syndromic unilateral cleft lip treated within a centralized service:the Cleft Care UK study. Part 6: summary and implications

Objectives: To summarize and discuss centre-level variation across a range of treatment and outcome measures and examine individual and ecological determinants of outcome in children in Cleft Care UK (CCUK). Setting and sample population: Two hundred and sixty-eight 5-year-old British children with non-syndromic unilateral cleft lip and palate (UCLP) recruited to CCUK and treated within a centralized service. Materials and Methods: Children had a range of treatment and outcome measures collected at a 5-year audit clinic. These outcomes included dento-alveolar arch relationships from study models, measures of facial appearance from cropped photographs, hearing loss from audiological assessment, speech from speech recordings, self-confidence and strengths and difficulties from parental self-report. Data were collected on educational attainment at age 7 using record linkage. Centre variation was examined using hierarchical regression and associations between variables were examined using logistic or poisson regression. Results: There was centre-level variation for some treatments (early grommet placement, fitting of hearing aids, fluoride treatment, secondary speech surgery and treatment for cleft speech characteristics) and for some outcomes (intelligibility of speech). Hearing loss was associated with a higher risk of poor speech while speech therapy was associated with a lower risk of poor speech. Children had high levels of caries but levels of preventative treatment (fluoride varnish and tablets) were low. Conclusions: Further improvements to and monitoring of the current centralized model of care are required to ensure the best outcomes for all children with cleft lip and palate

Life on a slippery slope: perceptions of health in adults with cystic fibrosis

This paper focuses on how adults with cystic fibrosis (CF) attending a specialist CF centre in the UK perceive their health. In common with many other genetic diseases, CF is traditionally conceptualised as a fatal childhood disease, yet the average survival age for those with CF has been steadily rising over the past half century. Thus it is now predicted that those born in 1990 will live on average for 40 years. To date, however, most sociological work has focused on children or adolescents affected by CF rather than on adults between the ages of 18 and 40, the focus of the study reported here. The paper shows that these adults' varying perceptions of health are related to the effects of CF, its treatment, and the context in which adults are placed. Four concepts of health are identified (health as 'normal', controllable, distressing and a release) along with certain styles, ways of coping and related strategies. Through these analytic distinctions the paper aims to make a contribution to the sociological understanding of lay concepts of health in adults with childhood or genetic disease

Biopsychosocial management of chronic low back pain patients with psychological assessment and management tools

The volume of evidence questioning the efficacy of traditional treatment methods for chronic low back pain sufferers is equalled only by that condoning a more biopsychosocial approach to assessment and treatment. Unfortunately literature on this subject is often academic and does little to offer practical advice to clinicians on how they can apply psychosocial principles to practice. This paper briefly explores the reasons behind the increasing number of chronic back pain patients, reviews the psychological models relevant to understanding this client group, and offers basic practical advice on psychosocial assessment and treatment methods

Design considerations in a clinical trial of a cognitive behavioural intervention for the management of low back pain in primary care : Back Skills Training Trial

Background Low back pain (LBP) is a major public health problem. Risk factors for the development and persistence of LBP include physical and psychological factors. However, most research activity has focused on physical solutions including manipulation, exercise training and activity promotion. Methods/Design This randomised controlled trial will establish the clinical and cost-effectiveness of a group programme, based on cognitive behavioural principles, for the management of sub-acute and chronic LBP in primary care. Our primary outcomes are disease specific measures of pain and function. Secondary outcomes include back beliefs, generic health related quality of life and resource use. All outcomes are measured over 12 months. Participants randomised to the intervention arm are invited to attend up to six weekly sessions each of 90 minutes; each group has 6–8 participants. A parallel qualitative study will aid the evaluation of the intervention. Discussion In this paper we describe the rationale and design of a randomised evaluation of a group based cognitive behavioural intervention for low back pain

A 'real puzzle': the views of patients with epilepsy about the organisation of care

BACKGROUND: Little is known about how individuals who have a diagnosis of epilepsy have experienced healthcare services or their views about how they should best be organised to meet their ongoing needs. METHODS: Focus group interviews. Individuals with epilepsy were identified in 5 practices in Wales: 90 were invited, 40 confirmed attendance and 19 individuals attended interviews in 5 groups of size 6, 5, 4, 3 and 1 (Table 2). Inclusion criteria: individuals with a confirmed diagnosis of epilepsy, aged between 18–65. The exclusion criteria were learning disability or an inability to travel to interview locations. RESULTS: The individuals in these group interviews were not 'epilepsy activists' yet they remained critical in extended discussions about the services encountered during their patient careers, wanting more information and advice about how to adapt to problems, particularly after initial diagnosis, more involvement in decision making, rapid access to expertise, preferably local, and improved communication between clinicians. A central concern was the tendency for concerns to be silenced, either overtly, or covertly by perceived haste, so that they felt marginalised, despite their own claims to own expert personal knowledge. CONCLUSIONS: Users of existing services for epilepsy are critical of current systems, especially the lack of attention given to providing information, psychosocial support and the wishes of patients to participate in decision making. Any reorganisation of services for individuals with epilepsy should take into account these perceived problems as well as try to reconcile the tension between the distant and difficult to access expertise of specialists and the local but unconfident support of generalists. The potential benefit of harnessing information technology to allow better liaison should be investigated

Does patient-physiotherapist agreement influence the outcome of low back pain? A prospective cohort study

BACKGROUND: Recent research suggests that agreement between patients' and health professionals' perceptions may influence the outcome of various painful conditions. This issue has received little attention in the context of low back pain and physiotherapy interventions. The current study aimed at exploring the relationship between patient-physiotherapist agreement on baseline low back pain intensity and related functional limitations, and changes in patient outcomes four weeks later. METHODS: Seventy-eight patient-physiotherapist dyads were included in the study. At baseline, patients and physiotherapists completed a Numerical Rating Scale and the Roland-Morris Disability Questionnaire. Patients' perceptions were reassessed over the phone at follow-up. RESULTS: Using multiple regression, baseline level of patient-physiotherapist agreement on pain intensity was associated with both outcome measures at follow-up. Agreement on functional limitations had no impact on outcomes. CONCLUSION: The results of this study indicate that patient-physiotherapist agreement has some impacts on the short-term outcomes of low back pain. Further research is needed to confirm these findings

Evaluation of a multi-disciplinary back pain rehabilitation programme—individual and group perspectives

To evaluate the impact of a multi-disciplinary back pain rehabilitation programme using a combination of individual and group change data. A total of 261 consecutive patients attending an assessment session for the back pain rehabilitation programme completed the SF-36 health survey questionnaire. The patients were requested to complete the questionnaires again at programme completion and at the 6-month follow-up. The Reliable Change Index was used to define 'clinical significance' in terms of the assessment of individual change. Half of those patients considered to be suitable for the programme subsequently completed it. In group terms, non-completers scored lower than completers on all SF-36 scales. Statistically significant improvements were evident for those completing the programme (all scales at P < 0.000), with improvement maintained at follow-up. In individual terms, 'clinical significance' was exceeded most frequently in the Physical Functioning and Role Physical scales. Whilst some participants lost previous improvements between completion and follow-up, others improved over this same time period. The majority of those completing the programme showed improvement in at least one scale. Adding assessment of individual change to traditional group change measures provides greater insight into the impact a rehabilitation programme has upon participants' quality of life. Whilst the programme is clearly effective for those who complete it, work is required to limit post-programme deterioration and improve uptak

Community psychiatric nurses and the care co-ordinator role: squeezed to provide ‘limited nursing’.

Background: The Care Programme Approach (CPA) is the key policy underpinning community-focused mental health services but has been unevenly implemented and is associated with increased inpatient bed use. The care co-ordinator role is central to the CPA and is most often held by Community Psychiatric Nurses (CPNs), but there has been little research into how this role is conducted or how it impacts on the work of CPNs and their ability to meet the needs of service users. Aim: The study aimed to identify and illuminate the factors that either facilitated or constrained the ability of CPNs, in their role as care co-ordinators, to meet service users’ and carers’ needs. Methods: A multiple case study of seven sectorised community mental health teams was employed over two years using predominantly qualitative methods of participant observation, semi-structured interviews and document review. Findings: Additional duties and responsibilities specifically associated with the care co-ordinator role and multidisciplinary working, combined with heavy workloads, combined to produce ‘limited nursing’, whereby CPNs are unable to provide evidence-based psychosocial interventions that are recognised to reduce relapse amongst people with severe mental illness. Conclusions: The role of the CPA care co-ordinator was not designed to support the provision of psychosocial interventions. Consequently, CPNs in the co-ordinator role faced with competing demands are unable to provide the range of structured, evidence-based interventions required. This may partially account for the increased inpatient bed use associated with the CPA