Regional Specialist Services Research Articles

Thyrotropin Receptor Autoantibody Assessment in Thyroid Eye Disease: Does the Assay Type Matter?

Thyroid receptor antibodies can quantify thyroid eye disease activity, predict outcomes and aid timing of interventions. The type and generation of assay is frequently unspecified, complicating meta-analyses. To determine the clinical and biochemical relationships between a second-generation thyrotropin receptor-binding inhibition antibody (TRAb) immunoassay, detecting stimulatory and blocking antibodies, with the thyroid stimulating immunoglobulin (TSI) bridging immunoassay detecting the stimulatory component only. Retrospective review of 100 consecutive patients attending a regional specialist service. For each patient and visit, both a TRAb and TSI were performed, and a clinical activity score (CAS) recorded. A significant positive correlation between TRAb and TSI (rho = 0.828, p < 0.01) but a weaker correlation between the assays and CAS (TRAb: rho = 0.439, p < 0.01; TSI: r = 0.357, p < 0.01) were found. In 10% of the episodic data, patients had a TRAb level that was disproportionately high (39.41 ± 52.84 IU/L), compared to their TSI levels (9.53 ± 12.10 IU/L) with a higher-than-average CAS (2.47 ± 1.78; range, 0-5). Within 12 months of diagnosis, a significant positive correlation between CAS and TRAb (rho = 0.503, p < 0.01) as well as between CAS and TSI (rho = 0.329, p < 0.01) were found. In patients with a diagnosis over 12 months, the correlation with CAS for both TSI and TRAb were Spearman rank correlation coefficient of 0.347 (p < 0.01) and 0.327 (p < 0.01), respectively. TRAb and TSI correlate strongly and to a lesser extent with the CAS. For most patients, TRAb can be replaced with the more economical TSI. TRAb also correlates better with newly diagnosed, more active patients than TSI. In a subset of patients, blocking antibodies may play a significant pathogenic role, requiring different treatment and monitoring. Further studies are required to investigate this relationship.

Clinical characteristics and unlicensed applications of licensed psychotropic drugs within a regional tertiary service for patients with affective disorders.

Background:Referral to tertiary services is recommended when patients with mood and anxiety disorders have not responded to multiple treatments in primary or secondary care. Within specialist services, some patients undergo treatment with licensed psychotropic medications outside the narrow terms of their market authorization (‘unlicensed applications’). We examined the demographic and clinical characteristics of patients referred to a regional specialist service to determine the extent of and factors associated with recommendations for unlicensed (‘off label’) prescriptions.Methods:Retrospective examination of demographic and clinical characteristics and treatment recommendations in patients seen within a 5-year period. Patients were allocated to three broad diagnostic clusters (unipolar depressive disorders, bipolar disorder, anxiety disorders), and two groups (with or without comorbid disorders). We compared patients in whom all treatment recommendations were for licensed applications with patients in whom at least one treatment was for an unlicensed application, across a range of variables reflecting illness ‘burden’ (duration, inpatient treatment, electroconvulsive therapy, nonfatal self-harm, psychosis).Results:From 177 new referrals, 148 patients (91 females, 57 males) could be placed within one of the three clusters. Many patients with bipolar disorder had not undergone treatment with lithium or formal psychological interventions in secondary care. Treatment recommendations involving unlicensed applications of medications were common (approximately 50%) in all clusters, but there were no significant differences in measures of illness burden between groups of patients, categorized according to licensed or unlicensed prescriptions.Limitations:Retrospective examination of notes recorded for other purposes, within a single service, in which treatment recommendations might reflect idiosyncratic practice is a limitation of our findings. Also, examined variables could not provide a comprehensive indication of illness severity or functional impairment.Conclusion:Our findings confirm that ‘off label’ prescribing is common in psychiatric practice. Treatment decisions relating to unlicensed applications appear to be influenced by factors other than overall illness burden.

Seeking normality: Parents' experiences of childhood stroke.

Incidence of paediatric stroke has been estimated to range from 1.2 to 13 per 100,000 children under 18years of age. It is a significant cause of long-term morbidity in children with long-term impacts on physical, cognitive, psychological, and social outcomes. However, little is known about the experiences of parents caring for a child with stroke. Such information is needed to inform the development of child- and family-centred care. We conducted in-depth interviews with parents of children with stroke. Participants were purposively sampled from three regional specialist services in England, based on the age of the child at stroke onset and time since first stroke. Interviews used a topic guide and were audio recorded and transcribed in full. Thematic analysis was conducted to develop an account that reflected patients' experiences from their own perspectives. Twelve parents participated with five children classified as having no to mild deficits and seven with moderate to severe deficits. Parents were concerned about the effects of stroke on the child's psychological, cognitive, and social well-being. Significant impacts on parents own well-being and on the family were reported. Although most experienced good quality acute care, meeting the child's needs after hospital discharge was problematic, with low levels of awareness of paediatric stroke among professionals and difficulties accessing relevant information and services. Meeting special education needs was variable. Parents were proactive in seeking to establish a sense of normality for the child and themselves. The findings illuminate a wider picture of paediatric stroke than indicated by clinical outcomes alone. Parents' experiences varied according to the child's needs but also family's situation and geographical location. Particular attention should be paid to co-ordinating services to meet multiple needs after discharge from hospital.

Overcoming challenges of implementation of FBT at the Regional Eating Disorders Service (REDS) in Auckland, New Zealand

In 2010 the New Zealand Ministry of Health made a decision to roll out training in FBT across New Zealand for clinicians working with eating disorders. The expectation was that the three regional specialist services in New Zealand would subsequently provide a lead to ensure implementation of FBT across their Region. This presentation will describe the process of change to achieve uptake of FBT as a new treatment model by the existing adolescent team of the Regional Eating Disorder Service in Auckland (REDS). The steps taken to overcome the significant initial challenges and the strategies and the resources required to achieve a sustainable model of provision of FBT at REDS will be discussed as well as its implications for regional training and supervision of CAMHS clinicians across the Northern and Midland Regions of New Zealand. The positive impact of these changes on outcome data is described in more detail in the presentation What difference does FBT make? Results of a service audit following the implementation of FBT. This abstract was presented in the Service Initiatives: Child and Adolescent Refeeding and FBT stream of the 2014 ANZAED Conference.

Cleft Lip and Palate: Effects on Neonatal Care

This article reviews clefts involving the lip with or without the palate (CLP±P) and isolated clefts of the palate (CP) from genetic and epidemiologic perspectives. Particular attention is given to management strategies to address issues arising in the neonatal period before the deformity is treated. The multidisciplinary team is especially important in tailoring care to the needs of the child. Regional specialist services are recommended during early childhood for infants who have CLP±P or CP.

Do older adults have equitable access to specialist epilepsy services?

The number of older patients with epilepsy has been increasing steadily. We assessed whether older adults with epilepsy have equitable access to our regional specialist service, designed to serve all patients regardless of age or their ability to pay. We examined the records of 846 adults under the current care of our epilepsy service and used data from a previous epidemiologic study to estimate the proportion of local patients accessing our service in different age groups. Whereas 43.7% of adults younger than age 20 were using the specialist service, only 2.3% of people with epilepsy who were 85 and older had been referred. The results raise the possibility of inadvertent age discrimination, putting older adults with seizures at greater risk for misdiagnoses and suboptimal management.

Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy

Objective:To investigate factors associated with school attendance and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).Design:Cross-sectional study.Setting:Regional specialist CFS/ME service.Patients:Children and young people aged under 18 years.Outcome measures:Self-reported school...

Commissioning regional specialist services—HIV and AIDS. Experiences of a consortium arrangement in the North East of England

The introduction of effective double combination therapy for HIV disease in 1996 and triple therapy in 1997 had cost implications for both purchasers and providers of regional specialist services. There is evidence that more patients presented for treatment. A consortium purchasing approach was undertaken in the North East of England to manage the introduction of combination therapy, to ensure that therapy was available for those who could benefit and to minimise the financial risk for individual health districts. The strengths and weaknesses of such an approach are discussed as well as the potential application to commissioning other specialist services. Public Health (2000) 114 , 398–401

Commissioning regional specialist services—HIV and AIDS. Experiences of a consortium arrangement in the North East of England

The introduction of effective double combination therapy for HIV disease in 1996 and triple therapy in 1997 had cost implications for both purchasers and providers of regional specialist services. There is evidence that more patients presented for treatment. A consortium purchasing approach was undertaken in the North East of England to manage the introduction of combination therapy, to ensure that therapy was available for those who could benefit and to minimise the financial risk for individual health districts. The strengths and weaknesses of such an approach are discussed as well as the potential application to commissioning other specialist services. Public Health (2000) 114, 398–401

Standards in neurological rehabilitation, June 1997

The European Federation of Neurological Societies (EFNS) Scientific Panel on Neurorehabilitation established a Task Force on standards in neurological rehabilitation in June 1996. The remit for the Task Force was to: (1) produce a report on the state of neurological rehabilitation across Europe; and (2) recommend standards for the provision of neurological services for disabled people. The main conclusions of the Task Force were as follows:(1) A questionnaire circulated to each European member country has indicated a significant lack of adequate neurological rehabilitation facilities across Europe. Very few countries have any established network of neurological rehabilitation centres. Few countries have adequately trained neurological rehabilitation physicians, therapists or nurses. Such poor facilities should be seen in the context of the large numbers and increasing prevalence of people with neurological disabilities.(2) The Task Force has summarized the significant benefits that can follow from the establishment of a dedicated and cost effective neurological rehabilitation service including functional improvement, reduction of unnecessary complications, better co‐ordination and use of limited resources, improved opportunities for education, training and research and a clear point of contact for the disabled person.(3) The Task Force recommends minimum standards for the prevention of neurological disability including access to health education, genetic counselling and emergency resources. The Task Force also encourages governments to invest in improved legislation for accident prevention.(4) The Task Force has outlined some minimum standards for the staffing of a neurological rehabilitation service including improved training both for neurologists and rehabilitation physicians. Such training could include a cross‐national training programme both for physicians and other health care staff.(5) The Task Force supports a two‐tier system of neurological services. We believe that disabled individuals should have access to a regional specialist service as well as a local community service. The regional specialist service would cater for people with more complicated and severe disabilities, including spinal injury and severe brain injury. The regional centres would provide specialist expertise for wheelchairs and special seating, orthotics, continence and urological services, aids and equipment including communication aids and environmental controls, prosthetics and driving assessment. The Task Force additionally endorses the development of local and community based rehabilitation teams with clear links to the regional centre.(6) The Task Force recognizes the limited amount of rehabilitation research and encourages individuals, universities and governments to invest more in rehabilitation research. Such investment should produce benefits for disabled people and their carers and in the long term benefits for the national economy.(7) The Task Force realizes that neurological rehabilitation is poorly developed both in Europe and the world as a whole. We firmly endorse international co‐operation in this field and are happy to co‐operate with any international organization in order to develop such links for clinical, educational or research initiatives.(8) The Task Force encourages individual countries to produce a document summarizing their own situation with regard to these standards and to produce a timetable for action to improve their situation. The EFNS Task Force would be pleased to assist in the publication of such deliberations or to act as a focus for international education and research or for sharing of examples of good practice.

Standards in Neurological Rehabilitation, June 1997

The European Federation of Neurological Societies (EFNS) Scientific Panel on Neurorehabilitation established a Task Force on standards in neurological rehabilitation in June 1996. The remit for the Task Force was to: (1) produce a report on the state of neurological rehabilitation across Europe; and (2) recommend standards for the provision of neurological services for disabled people. The main conclusions of the Task Force were as follows: (1) A questionnaire circulated to each European member country has indicated a significant lack of adequate neurological rehabilitation facilities across Europe. Very few countries have any established network of neurological rehabilitation centres. Few countries have adequately trained neurological rehabilitation physicians, therapists or nurses. Such poor facilities should be seen in the context of the large numbers and increasing prevalence of people with neurological disabilities. (2) The Task Force has summarized the significant benefits that can follow from the establishment of a dedicated and cost effective neurological rehabilitation service including functional improvement, reduction of unnecessary complications, better coordination and use of limited resources, improved opportunities for education, training and research and a clear point of contact for the disabled person. (3) The Task Force recommends minimum standards for the prevention of neurological disability including access to health education, genetic counselling and emergency resources. The Task Force also encourages governments to invest in improved legislation for accident prevention. (4) The Task Force has outlined some minimum standards for the staffing of a neurological rehabilitation service including improved training both for neurologists and rehabilitation physicians. Such training could include a cross-national training programme both for physicians and other health care staff. (5) The Task Force supports a two-tier system of neurological services. We believe that disabled individuals should have access to a regional specialist service as well as a local community service. The regional specialist service would cater for people with more complicated and severe disabilities, including spinal injury and severe brain injury. The regional centres would provide specialist expertise for wheelchairs and special seating, orthotics, continence and urological services, aids and equipment including communication aids and environmental controls, prosthetics and driving assessment. The Task Force additionally endorses the development of local and community based rehabilitation teams with clear links to the regional centre. (6) The Task Force recognizes the limited amount of rehabilitation research and encourages individuals, universities and governments to invest more in rehabilitation research. Such investment should produce benefits for disabled people and their carers and in the long term benefits for the national economy. (7) The Task Force realizes that neurological rehabilitation is poorly developed both in Europe and the world as a whole. We firmly endorse international co-operation in this field and are happy to co-operate with any international organization in order to develop such links for clinical, educational or research initiatives. (8) The Task Force encourages individual countries to produce a document summarizing their own situation with regard to these standards and to produce a timetable for action to improve their situation. The EFNS Task Force would be pleased to assist in the publication of such deliberations or to act as a focus for international education and research or for sharing of examples of good practice.