Adult Specialists Research Articles

Strategic directions for transition to adulthood for patients with spina bifida

Although 85% of children with spina bifida survive to adulthood, there is little information and few proven service practices to guide their healthcare transition (HCT) to adult care. Our objective was to deepen our understanding of the factors that facilitate the HCT experience of these patients. Individual interviews with patients with spina bifida (n = 15) and their parents (n = 14) were performed to investigate levels of HCT readiness, attitudes, and practices. Data were analyzed for themes that mapped to theory-based constructs and synthesized as strategic directions for tailoring services. Patient age averaged 18.0 ± 2.8 yr (range 14-28 yr). Factors common to youth who were progressing toward HCT included individual factors: higher cog- nitive functioning, strong interest in being independent from parents; family factors: exposure to a parenting style that fostered independence; service factors: success negotiating primary care responsibilities with familiar adult healthcare providers. Factors common to youth who were not progressing towards HCT included individual factors: lower cognitive ability, impaired physical ability; family factors: lack of parent awareness of medical transition needs, and, service factors: strong dependence on pediatric providers for care coordination, and negative experiences with adult specialists perceived as not anticipating their needs. Tai- loring HCT for individuals with spina bifida may be best done in conjunction with HCT readiness assessments conducted at intervals throughout the HCT period. These assessments should include current and projected cognitive functioning; dyadic support to align patients and parents around HCT goals and care coordination tasks; and methods to familiarize patients and families with adult providers.

Peer-mediated check-in/check-out for students at-risk for internalizing disorders.

The present study investigated the effectiveness of peer-mediated check-in/check-out (CICO) on the internalizing behaviors of elementary school students. A nonconcurrent multiple-baseline design across participants was utilized to evaluate the intervention's effectiveness for 3 students in 1st and 2nd grade. Two 5th grade students were trained to implement CICO under the supervision of an adult intervention specialist. The peer-mediated CICO procedure was effective for 2 of the 3 participants as evidenced by moderate to large effect sizes; however, all 3 participants were identified as "at-risk" on a universal screener for internalizing problems. The results suggest peer-mediated CICO may be a resource-efficient Tier II strategy to meet the needs of students engaging in internalizing behavior within a multitiered framework of service delivery.

PTU-084 Long term outcomes after transition to adult services in paediatric-onset inflammatory bowel disease patients treated with anti-tnf

Introduction Anti-TNF therapy use in paediatric IBD (PIBD) is increasing worldwide with evidence of short-term effectiveness and safety. Longer term outcomes are less clear due to lack of follow-up (FU) of young people after transition to adult services. We aimed to assess effectiveness and safety of anti-TNF therapy in PIBD post-transition to adult care. Method A retrospective case review of PIBD patients treated with anti-TNF (Infliximab (IFX) or Adalimumab (ADA)) in the SE Scotland regional PIBD unit at RHSC, Edinburgh and then transitioned to the regional adult specialist IBD centre at WGH, Edinburgh, during 01/01/00–30/09/13. Data (including outcome and duration of anti-TNF therapy, dose escalation, adverse events and discontinuation/re-start of therapy) were collected prior to, at the time of transition from PIBD services, and to study end point (transfer out of region, loss to FU, death or ongoing adult care at 31/07/2014), a minimum 10 months FU. Results 34 children (30 Crohn’s disease (CD), 4 ulcerative colitis (UC)) had anti-TNF exposure in PIBD services then a median (range) duration of FU post-transition of 2.9 (0.7–9.3) years. At transition, 19/34 were still on anti-TNF (12 IFX and 7 ADA). 10/12 IFX were in steroid-free remission (SFR) and 8/10 remained in SFR at last FU; 2 discontinued IFX due to loss of response (LoR), both then had ADA with 1 ADA LoR and 1 SFR on ADA at last FU. 1/12 IFX patient with moderate disease at transition then achieved remission, had planned drug withdrawal (PDW) then relapsed, restarted IFX and had mild disease at last FU. 1/12 IFX patients had response with mild disease post-induction IFX but transitioned and had primary non-response (PNR) by 6 doses IFX, and switched to ADA with moderate disease activity at last FU. 3/7 ADA patients at transition were in SFR; 1 stopped as PDW in prolonged remission but 2 stopped due to adverse events. 2/7 ADA patients with mild disease at transition then achieved sustained remission up to last FU. 2/7 ADA patients had moderate disease at transition; one had ADA LoR and moderate disease at last FU, the other gained remission so had PDW, relapsed but was in remission at last FU. There were no deaths or malignancies associated with anti-TNF use. Conclusion Anti-TNF therapy post-transition is effective at maintaining remission in those with remission prior to transition, although some may require a 2nd anti-TNF agent to maintain remission. Those previously not in remission can achieve sustained remission, usually if just starting anti-TNF maintenance at transition; others do not and have a more complicated disease course. Loss of response remains a key reason for stopping anti-TNF therapy. Disclosure of interest None Declared.

Adolescent and Adult Outcomes in Women Following Childhood Vaginal Reconstruction for Cloacal Anomaly

We examined outcomes in female adolescents and women who underwent vaginoplasty in childhood during genitourinary reconstruction for cloacal anomalies. We retrospectively reviewed the medical notes on girls and women attending an adult specialist center for genitourinary anomalies. Data were collected on vaginal reconstruction, menstruation, sexual and reproductive function, and urological and gastroenterological outcomes. We identified 19 patients with a mean age of 22 years (range 13 to 35), of whom 16 (84%) underwent vaginoplasty in the first year of life. Nine of these 16 patients (56%) had required 1 (7) or 2 (2) further vaginal reconstructions to facilitate menstruation or sexual activity. The remaining 7 patients (44%) required no further vaginal reconstruction. Nine of the 19 patients (47%) had associated müllerian anomalies, obstructed menstruation developed in 5 (26%) and 1 required hemihysterectomy. Eight patients were sexually active, of whom 1 experienced difficult penetration. Three patients attempted to conceive, including 1 with a complex preterm delivery and 2 undergoing fertility treatment. Of the patients 74% underwent further reconstruction of the renal tract and 36% had an enteric stoma. This study confirms the complexity of vaginal reconstruction in this group with a notable vaginoplasty revision rate. Müllerian anomalies were identified in almost half of the patients, a higher incidence than previously reported, and in a quarter obstructed menstruation developed in puberty. A specialist team with gynecologic input should treat patients with cloacal anomalies. Outcome data are sparse. There remains a need for well planned, prospective cohort studies that include assessments of psychological, sexual and reproductive outcomes.

Robotic Surgery may Not "Make the Cut" in Pediatrics.

Since the introduction of robotic surgery in children in 2001, it has been employed by select pediatric laparoscopic surgeons, but not to the degree of adult surgical specialists. It has been suggested that the technical capabilities of the robot may be ideal for complex pediatric surgical cases that require intricate dissection. However, due to the size constraints of the robot for small pediatric patients, the tight financial margins that pediatric hospitals face, and the lack of high level data displaying patient benefit when compared to conventional laparoscopic surgery, it may be some time before the robotic surgical platform is widely embraced in pediatric surgical practice.

Transition from pediatric to adult surgery care for patients with disorders of sexual development

Disorders of sexual development (DSDs) are relatively rare congenital conditions in which the development of the chromosomal, gonadal, or anatomic sex is atypical. Some conditions may not manifest until puberty or adulthood. The examination and workup of either an infant or an older patient with suspected DSD should be directed and performed systematically by a multidisciplinary team. Ideally, the team will include those with not only an interest in DSD but also experience with this group of patients. This article will briefly orient the reader to the conditions and decisions that may have been made during infancy, childhood, and adolescence and then focus on the challenges that may accompany transitioning the care of DSD patients from pediatric to adult surgeons and specialists to enable appropriate decisions and care. The actual transition will optimally involve a well-developed action plan that will take place gradually over a number of years as the person becomes educated about their condition and empowered to participate knowingly and actively in their own care.

Therapeutic drug monitoring: Perspectives of psychiatrists in Turkey

Objectives. Although the medical and economic implications of therapeutic drug monitoring have been intensely discussed over the past years, little is known about the experiences and attitudes of psychiatrists in their clinical practice. The aim of this study was to investigate psychiatrists’ daily practice with therapeutic drug monitoring in Turkey. Methods. A nation-wide cross-sectional survey among adult and child psychiatry specialist psychiatrists in Turkey was conducted. Results. We found that 98.4% (n = 380) of the study participants used TDM in clinical practice and 1.6% (n = 6) did not. However, TDM use is limited to mood stabilizers (lithium 96.3%, valproate 97.6%) to a great extent. Only a small number of psychiatrists perform TDM for other psychotropic drugs, e.g., clozapine 2.4%, tricyclic antidepressants 1.3%, benzodiazepines 1.1%, and selective serotonin reuptake inhibitors 0,8%. Conclusions. Most of the psychiatrists in Turkey have a positive attitude toward use of therapeutic drug monitoring although there is also a considerable difficulty to reach services for the therapeutic drug monitoring of psychotropics other than mood stabilizers.

Transition of Care Under One Roof at the Mcmaster Hemoglobinopathy Clinic

Transition from pediatric to adult care is a well-recognized challenge for adolescents and young adults (AYA) with sickle cell disease (SCD) and thalassemia. Transition of care for AYAs is a multi-layered process, involving the patient, their family, and healthcare providers, with an end goal of ensuring that transition is as smooth as possible for all parties involved. In 2013, McMaster University launched a comprehensive care clinic for patients with SCD and thalassemia where a pediatric hematologist and an adult hematologist work side-by-side, along with a shared team of allied health care providers. One goal of this clinic is to facilitate fluid transition, by maintaining continuity in the patient’s medical care and providing a familiar environment for AYA patients. The aim of this study was to assess baseline level of understanding about transition from pediatric patients and their parents, expectations for transition, and recommendations for a smooth transition. In addition, opinions and experiences from young adult patients who had experienced transition of care under a variety of models were collected in order to identify key elements of how to optimally facilitate transition of care.After an informed consent process, 17 participants were interviewed regarding their, or their child’s, transition of care. Interviews were conducted with 5 pediatric patients, 5 parents, and 7 young adults. One-on-one semi-structured interviews were conducted with questions ranging from types of medical visits, knowledge of transition, experiences with transition, and recommendations. Saturation was reached and data was analyzed using an inductive-iterative approach.Eight SCD patients and 4 thalassemia major patients participated in the study. Themes that emerged included: apprehension from pediatric patients about leaving a supportive care environment; desire for a patient orientation with both their pediatric and adult specialists prior to transition; desire for a peer support group from pediatric patients, young adult patients and families; and need for a well established transition education piece for patients and families. Young adult patient experiences were diverse, as most had experienced SCD or thalassemia care at different hospitals. Patients who had transitioned in the McMaster clinic were pleased with the opportunity to participate in clinic visits attended jointly by their pediatric and adult hematologists prior to transition of care. Patients were appreciative of the continuous involvement of other clinic staff.The baseline responses obtained from this study can guide policies in a combined pediatric-adult model Hemoglobinopathy Clinic. Completing transition of care “under one roof” has potential to provide a uniquely supportive environment for AYA patients. An overlap in clinic staff for pediatric and adult patients can facilitate a strong patient rapport with a consistent set of healthcare providers, and can help to ensure consistency of care and collaboration between providers as patients transition through the AYA stages of life. Steps can be put in place to ensure that transition is as undisruptive as possible and to eliminate patients feeling uncertain about their care process. DisclosuresNo relevant conflicts of interest to declare.

UTILIZATION OF CONDITION SPECIFIC LONG TERM CARE PLANS TO FACILITATE TRANSITION TO THE ADULT HEALTHCARE SYSTEM (ON TRAC)

UTILIZATION OF CONDITION SPECIFIC LONG TERM CARE PLANS TO FACILITATE TRANSITION TO THE ADULT HEALTHCARE SYSTEM (ON TRAC)

Transforming Pedagogy and Experience through e-Learning in Teacher Education

AbstractThis paper provides a case study and discussion of a curriculum design model using technology in the Initial Teacher Training context. It describes the transformation in design thinking which took the Adult Literacy Subject Specialist teacher training programme from a fully taught face-to-face model to one where technology acts as the ‘delivery mechanism’ and a space for problem-based learning.TThree discrete, but connected, themes are discussed here, which marked significant successes in the course, but which also raised issues for teacher educators and students. Firstly, an example is given of a shift in curriculum design thinking, incorporating the flipped classroom model in the delivery of a key ‘threshold concept’. Secondly, a case is made for a ‘persistent curriculum’; one which ensures students endure and succeed through the technologies used. Finally, a critical analysis of the success and issues around the use of blogs as the principal tool for reflective practice and formative assessment...

EAACI food allergy and anaphylaxis guidelines: diagnosis and management of food allergy.

Food allergy can result in considerable morbidity, impact negatively on quality of life, and prove costly in terms of medical care. These guidelines have been prepared by the European Academy of Allergy and Clinical Immunology's (EAACI) Guidelines for Food Allergy and Anaphylaxis Group, building on previous EAACI position papers on adverse reaction to foods and three recent systematic reviews on the epidemiology, diagnosis, and management of food allergy, and provide evidence-based recommendations for the diagnosis and management of food allergy. While the primary audience is allergists, this document is relevant for all other healthcare professionals, including primary care physicians, and pediatric and adult specialists, dieticians, pharmacists and paramedics. Our current understanding of the manifestations of food allergy, the role of diagnostic tests, and the effective management of patients of all ages with food allergy is presented. The acute management of non-life-threatening reactions is covered in these guidelines, but for guidance on the emergency management of anaphylaxis, readers are referred to the related EAACI Anaphylaxis Guidelines.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis.

To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. Secondary analysis of data using a supra-analysis design to identify commonality of experiences. Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

Identifying the key elements of an education package to up-skill multidisciplinary adult specialist palliative care teams caring for young adults with life-limiting conditions: an online Delphi study

ObjectivesTo collect the views of experts to inform the development of an education package for multidisciplinary adult specialist palliative care (SPC) teams caring for young people with life-limiting conditions.MethodsA modified...

Transitioning Youth with Rheumatic Conditions: Perspectives of Pediatric Rheumatology Providers in the United States and Canada

To assess North American pediatric rheumatology providers' perspectives on practices, barriers, and opportunities concerning the transition from pediatric-centered to adult-centered care. Childhood Arthritis and Rheumatology Research Alliance (CARRA) members completed a 25-item survey assessing current transition practices, transition policy awareness, and transitional care barriers and needs. Results were compared to the American Academy of Pediatrics (AAP) 2008 survey on transitional care. Over half (158/288, 55%) of CARRA members completed the survey. Fewer than 10% are very familiar with AAP guidelines about transition care for youth with special healthcare needs. Eight percent have a formal written transition policy, but 42% use an informal approach. Patient request (75%) most frequently initiates transfer to adult care. Two major barriers to transition are fragmented adult medical care and lack of sufficient time to provide services. Compared with AAP survey participants, pediatric rheumatology providers are significantly more likely to help youth find an adult specialist (63% vs 45%) and discuss confidentiality and consent before age 18 (45% vs 33%), but are less likely to help with medical summary creation (16% vs 27%) or find a primary care provider (25% vs 47%). Outcomes ranked as "very important" in defining a successful transition are survival (76%), seeing an adult rheumatologist within 6 months of final pediatric rheumatology visit (66%), and maintaining insurance coverage (57%). This comprehensive survey of North American pediatric rheumatology providers regarding transitional care practices demonstrates deficiencies in education, resources, and a formalized process. Respondents support development of standardized rheumatology-specific transition practices.

“IT'S A MARATHON NOT A SPRINT” – SETTING THE PACE IN DEVELOPMENT OF A REGIONAL PALLIATIVE CARE RESEARCH SPECIALTY GROUP

BackgroundResearch in palliative care is imperative to improve the evidence base and maintain the best quality care for patients and families. In 2011, the Sussex Cancer Network (SCN) Palliative Care...

Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.

As new technologies enable the development of non-invasive prenatal diagnosis (NIPD) for cystic fibrosis (CF), research examining stakeholder views is essential for the preparation of implementation strategies. Here, we compare the views of potential service users with those of health professionals who provide counselling for prenatal tests. A questionnaire incorporating a discrete choice experiment examined preferences for key attributes of NIPD and explored views on NIPD for CF. Adult patients (n = 92) and carriers of CF (n = 50) were recruited from one children’s and one adult NHS specialist CF centre. Health professionals (n = 70) were recruited via an e-mail invitation to relevant professional bodies. The key attribute affecting service user testing preferences was no miscarriage risk, while for health professionals, accuracy and early testing were important. The uptake of NIPD by service users was predicted to be high and includes couples that would currently decline invasive testing. Many service users (47%) and health professionals (55.2%) thought the availability of NIPD for CF would increase the pressure to undergo prenatal testing. Most service users (68.5%) thought NIPD for CF should be offered to all pregnant women, whereas more health professionals (68.2%) thought NIPD should be reserved for known carrier couples. The implications for clinical practice are discussed.

Volunteers in Specialist Palliative Care: A Survey of Adult Services in the United Kingdom

Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care.

Indigenous Respiratory Outreach Care: the first 18 months of a specialist respiratory outreach service to rural and remote Indigenous communities in Queensland, Australia.

Respiratory diseases are a leading cause of morbidity and mortality in Indigenous Australians. However, there are limited approaches to specialist respiratory care in rural and remote communities that are culturally appropriate. A specialist Indigenous Respiratory Outreach Care (IROC) program, developed to address this gap, is described. The aim of the present study was to implement, pilot and evaluate multidisciplinary specialist respiratory outreach medical teams in rural and remote Indigenous communities in Queensland, Australia. Sites were identified based on a perception of unmet need, burden of respiratory disease and/or capacity to use the clinical service and capacity building for support offered. IROC commenced in March 2011 and, to date, has been implemented in 13 communities servicing a population of approximately 43000 Indigenous people. Clinical service delivery has been possible through community engagement and capacity building initiatives directed by community protocols. IROC is a culturally sensitive and sustainable model for adult and paediatric specialist outreach respiratory services that may be transferrable to Indigenous communities across Queensland and Australia.

Improving Outcomes for Teenagers and Young Adults (TYA) with Cancer

The management of TYA with cancer is characterized by biological features in comparison to children. Therefore specialized treatment units have been established within professional structures of care for this group, and a European multidisciplinary framework for the treatment of TYA with cancer was founded.Objectives are to promote interdisciplinary collaboration and provide strategic concepts to improve patient care centered to the special needs of this age group. Access to clinical trials for all TYA in the EU will be improved and research initiated, examining biology, epidemiology and health services.Special goals of the interprofessional cooperation are:Different measurements are discussed improving outcomes for TYA is proceeding at different speeds in different parts of the world. In some there are established teams, bringing together paediatric and adult specialists from many healthcare professions, reviewing and contributing to the optimal care of all TYA with cancer as part of national health policy.

Liver in congenital heart disease: Implications of the fontan procedure for pediatric and adult liver specialists.

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