Models Of Care For Adults Research Articles

Evaluation of an Australian community‐based model of care for adults with intellectual and developmental disabilities undergoing procedures under sedation

AbstractBackgroundAdults with intellectual and developmental disabilities (IDDs) have higher healthcare needs, but experience difficulties accessing preventative healthcare. Despite this inequity, models of care that address barriers and provide customized treatment are limited, exacerbating vulnerabilities and poorer health outcomes. This study describes the development of a procedural model of care (PMOC) for adults with intellectual and developmental disabilities, and evaluates the sedation tier, exploring procedure and sedation outcomes.MethodsDevelopment of the PMOC was informed by current evidence and themes identified in stakeholder consultation and literature. A retrospective cohort study evaluated the sedation option within the model, conducted at a community‐based disability service in Melbourne, Australia. All records over a 14‐month period were included. Descriptive statistics and univariate logistic regression analysis were used to analyze data.ResultsThe PMOC includes assessment, intervention, and evaluation tiers. Intervention options range from least to most invasive, culminating in the sedation level (mild; oral psychoactive, moderate; midazolam and nitrous oxide, high; general anesthetic). A total of 127 adults with IDDs received procedures under sedation; median age was 26 years, 61% lived with family, and 81% had multiple disabilities. A total of 197 procedures were referred to CDDH, including immunization (61%) and oral health reviews (23%), and resulted in 98% completion rate. Mild (n = 36) and moderate (n = 95) sedation were used for 67% of procedures. The PMOC correctly predicted 91% of sedation requirements. Living with family (OR 2.211, 95% CI 1.001–4.885, p = 0.05); immunization (OR 7.935, 95% CI 4.025–15.644, p <0.001); and multiple disabilities (OR 3.064, 95% CI 1.123–8.362, p = 0.029) were associated with mild, moderate and high sedation options, respectively.ConclusionsModels of care offering individualized interventions can support adults with IDDs to receive preventative procedures. Demographic variables may be able to predict sedation requirements. Wider application of this model may reduce health inequity within this vulnerable population.

Healthcare transition in pediatric neurosurgery: lessons learned from a pilot program for patients with hydrocephalus and spina bifida.

The pediatric neurosurgical community has increasingly recognized the importance of healthcare transition, the process of moving a patient from a pediatric to an adult model of care. However, surveys of pediatric neurosurgeons have revealed that few institutions have formal transition programs. Here, the authors share their preliminary experience with the development of a formal transition pilot program for patients with spina bifida and/or hydrocephalus. Patients 18 years of age or older with a diagnosis of spina bifida and/or hydrocephalus who were followed by a pediatric neurosurgeon at Connecticut Children's from January 2017 to December 2023 and were recommended to transition to an adult neurosurgeon were retrospectively reviewed. Patients in the informal transition program (ITP) cohort (i.e., the recommendation to transition was made before the formal transition program [FTP] was developed in early 2020) were compared with those in the FTP cohort. Twenty-two patients met inclusion criteria with 7 (31.8%) in the ITP cohort and 15 (68.2%) in the FTP cohort. The median age at the time of the recommendation to transition was similar in both ITP and FTP cohorts (24 [IQR 20-35] years vs 25 [IQR 24-27] years, respectively). Four (57.1%) patients in the ITP cohort had a confirmed visit with an adult neurosurgeon, compared with 13 (86.7%) patients in the FTP cohort (p = 0.274). One patient in the ITP cohort with a failed transition returned to pediatric neurosurgical care, and 1 patient in the FTP cohort required a shunt revision by an adult neurosurgeon within 1 year of the recommendation to transition. Healthcare transition is recognized as a priority within pediatric neurosurgery, but structured, formal transition programs remain underdeveloped. The authors' preliminary experience with a pilot transition program demonstrated that patients who underwent a formal transition were more likely to successfully establish care with an adult neurosurgeon and trended toward less resource utilization.

Adult provider role in transition of care for young adult pediatric recipients of liver transplant: An expert position statement.

Health care transition (HCT) is the process of changing from a pediatric to an adult model of care. Young adult pediatric recipients of liver transplant transferring from pediatric to adult health care services are highly vulnerable and subject to poor long-term outcomes. Barriers to successful transition are multifaceted. A comprehensive HCT program should be initiated early in pediatrics and continued throughout young adulthood, even after transfer of care has been completed. It is critical that pediatric and adult liver transplant providers establish a partnership to optimize care for these patients. Adult providers must recognize the importance of HCT and the need to continue the transition process following transfer. While this continued focus on HCT is essential, current literature has primarily offered guidance for pediatric providers. This position paper outlines a framework with a sample set of tools for the implementation of a standardized, multidisciplinary approach to HCT for adult transplant providers utilizing "The Six Core Elements of HCT." To implement more effective strategies and work to improve long-term outcomes for young adult patients undergoing liver transplant, HCT must be mandated as a routine part of posttransplant care. Increased advocacy efforts with the additional backing and support of governing organizations are required to help facilitate these practices.

729 Enabling Children with Long Term Tracheostomies to Re-Enter the Water for Leisure or Therapeutic Purposes – the Potential to Adapt an Adult Care Model into the Paediatric Setting

729 Enabling Children with Long Term Tracheostomies to Re-Enter the Water for Leisure or Therapeutic Purposes – the Potential to Adapt an Adult Care Model into the Paediatric Setting

Improving Transition of Care for Pediatric Patients With Chronic Kidney Disease: A Pilot Project.

Introduction Transition is the process of preparing an adolescent or young adult for the adult model of care. Poor transitions have been linked to increased medical utilization and poorer kidney outcomes. There are limited studies evaluating predictors of transition readiness or interventions in pediatric patients with chronic kidney disease (CKD). Methods We enrolled 42 non-dialysis, non-transplant patients with CKD stage 2 or higher and 14 years and older receiving care in our pediatric nephrology clinic. Data collected included demographics, clinical information, and transition readiness as measured by the Transition Readiness Assessment Questionnaire (TRAQ). Patients were provided with a structured, remote curriculum with resources that addressed areas of need. Patients were followed every three to six months. Repeat TRAQ questionnaires were administered six months after enrollment. Results Our study found that younger age and male gender were risk factors for poor transition. Age was consistently a positive predictor of higher TRAQ scores in the medication, appointment, and total score domains (p < 0.05). Male gender was a risk factor for lower TRAQ scores in the appointment and communication domains (p < 0.05). Additionally, our curriculum was effective at improving scores across all TRAQ domains, with an average increase of about 25% in six months. There was no difference in patients who had a three-month follow-up as compared to a six-month follow-up (p > 0.05). Conclusion Our study finds that younger age and male gender are risk factors for poor transition. Additionally, a structured, remote curriculum is effective at improving transition readiness.

Codevelopment of a model of care for adults living with cystic fibrosis-related diabetes.

Cystic fibrosis (CF) related diabetes affects up to half of all adults with CF and is associated with higher morbidity and mortality. Our aim is to codevelop an ideal model of care that integrates diabetes technology and better meets the needs of adults living with the condition to improve attendance, engagement, service satisfaction, and clinical outcomes. Using qualitative research methods, we evaluated disease perceptions, barriers, and enablers to optimal CF-related diabetes management and service delivery. Integration of continuous glucose monitoring (CGM) was also explored. An initial broad purposive consumer survey was followed by focus groups with end-users. Grounded theory approach was utilized with major problem areas identified then explored, coded, and grouped into requisites for an "ideal model of care"for adults living with CF-related diabetes. Two key themes emerged (i) an ideal model of care consisted of a dual-specialty service co-led by endocrinology and CF physicians and supported by diabetes educator and CF dietitian with a goal to provide consistent and personalized diabetes management and (ii) CGM was acceptable for use in adults with CF-related diabetes with many perceived benefits and should be integrated into the model of care. Barriers to optimizing glycemic control included diet, finger-prick testing, reduced access to CGM, and pulmonary exacerbations. End-user feedback on CGM was overwhelmingly positive with regard to operability. CGM was also identified as a tool that could be used to engage, educate, and empower adults living with CF-related diabetes and facilitate constructive and personalized clinical decision-making by healthcare providers. For adults living with CF, a diagnosis of diabetes is associated with increased treatment burden. Our findings suggest an "ideal model of care"for CF-related diabetes would be co-led by endocrinology services integrated within a pre-existing CF service, incorporating CGM.

A93 AN ANALYSIS OF POST-ENDOSCOPY EXPERIENCES WITHIN AN EARLY ADULT IBD PATIENT POPULATION AT A NATIONAL IBD CENTRE

Abstract Background Up to 25% of IBD patients are diagnosed before the age of 18, necessitating a process of transition from pediatric to early adult care. Poor endoscopy experiences have been described to jeopardize the overall patient experience with the healthcare system. There is a paucity of literature evaluating the endoscopy experiences of IBD patients during this pivotal point in their disease management. Aims The aim of this study is to describe the reported post-endoscopy experiences of early adult IBD patients (18 to 25 years old) compared to those in an adult model of care (26 years old, or above). Methods A retrospective analysis of patients with IBD treated at Mount Sinai Hospital from January 1st, 2017 to December 31st, 2021 who underwent an outpatient colonoscopy was performed. Qualitative and quantitative data were longitudinally collected from endoscopy records. The first phase of the study consisted of a comparison of outcomes between early adults (18 to 25 years) and adults (26 years, or above). The second phase consisted of a comparison of outcomes between sedation types (deep versus conscious). T-test was used to compare differences for continuous variables and Fisher exact test was used for categorical variables. Results In this initial pilot study of 171 patients, 12.9% of early adults underwent deep sedation compared to 11.4% of adults. Patients who underwent deep sedation were more likely to have Crohn’s disease compared to Ulcerative Colitis (95.2%, 57.7%, pampersand:003C0.01). There were no differences in mean procedure lengths in minutes (18.3, 18.6, p=0.80). Early adults who underwent conscious sedation required additional sedative medications during the procedure in 48.9% of cases compared to 32.3% in the adult cohort (p=0.04), however the mean total of conscious sedation medication used had no differences between the two groups (p=0.59). Nursing post-procedure subjective scoring measuring pain and nausea showed no significant difference (p=0.29). Physician narrative note descriptions of subjective procedural tolerance also showed no significant differences (p=0.78). Conclusions Patients with Crohn’s disease are more likely to require deep sedation for their adult colonoscopies compared to patients with Ulcerative Colitis. Gastroenterologists are not adequately prepared to gauge the amount of conscious sedation an early adult patient will require, necessitating top-up amounts peri-procedure more frequently. Current tools in the forms of subjective scoring and narrative documentation utilized by healthcare providers to measure procedural experience and tolerance are poor markers of actual patient experience. Future efforts should be focused on better understanding the endoscopic experience of the early adult IBD patient population and utilizing an innovative and collaborative approach. Funding Agencies Division of Gastroenterology, University of Toronto Faculty of Medicine Resident Research Grant

Core competencies for first contact physiotherapists in a direct access model of care for adults with musculoskeletal disorders: A scoping review.

To optimise the management of Musculoskeletal disorders (MSKDs), many countries have implemented direct access to physiotherapy; however, the core competencies required for first contact physiotherapists (PTs) have not been precisely defined. The aim of this scoping review is to identify and describe the core competencies required for first contact PTs treating adults with MSKDs. We conducted a scoping review of the literature by searching eight databases and grey literature up to July 2023. We performed a thematic analysis of the competencies identified based on predefined themes relevant to first contact physiotherapy in direct access models in primary or emergency care settings. Sixty-five articles were included. Seventeen core competencies were identified and grouped into 5 themes: (1) Assessment and examination; (2) Management and interventions; (3) Communication; (4) Cooperation and collaboration; and (5) Professionalism and leadership. Our findings provide an international perspective on the core competencies required for first contact PTs.

A model of care for attention deficit and hyperactivity disorder among adults in the community.

To describe the process of collaborative, contextualised development and implementation of a model of care for adults with symptoms suggestive of attention deficit and hyperactivity disorder in an Aboriginal community-controlled health service. The current article describes an attempt to reduce unmet mental health needs through a systemic approach within a well-established Indigenous community-controlled organisation.

Rethinking Care Models for Young Adults With Sickle Cell Disease

This Viewpoint discusses developing new sickle cell disease adult care models to support specialized health care homes that are patient-focused and antiracist, rather than an approach focused mainly on financial incentives.

Transition of Care to Adult Neuroimmunology

A structured health care transition is essential for adolescents with chronic disease to ensure continuity of care without treatment lapse. Though rare, multiple sclerosis is diagnosed in children and adolescents and these patients will eventually require transition to adult care in late adolescence and early adulthood. Some barriers to transition include limited independence of the adolescent, fear of an unknown adult care model, and difficulty ending close relationships with longstanding pediatric providers. For optimal success, transition planning should be started in the early teenage years, and graduated independence and self-management skills should be fostered over time. Providers should also be aware of the developmental evolution of adolescents when assessing transition readiness and should screen for barriers during routine clinic visits to ensure that these are addressed prior to the time of transfer.

Outcomes following a multi-disciplinary pediatric-to-adult transition and transfer clinic at a level four epilepsy center.

Transition and transfer from the pediatric to adult care model is crucial to the continued long-term health and well-being of patients impacted by life-long diseases. This project explores the impact of a novel epilepsy transition collaboration between Nationwide Children's Hospital (NCH) and Ohio State University (OSU) Wexner Medical Center. We retrospectively analyzed the characteristics and outcomes of 56 consecutive patients transferred to an adult health care system. These patients were divided into two groups. A cohort of 23 patients transferred in 2019 prior to clinic implementation were compared to a cohort of 33 consecutive patients transferred in 2019 and early 2020 using the epilepsy transition and transfer clinic model. Data points of interest included demographic information, age at transfer, epilepsy diagnosis, pharmacoresistance of epilepsy, surgical history and compliance with follow-up. Patients transferred to OSU through the transition clinic were statistically more likely to be followed at OSU (p = .037) within 6 months (p = .013). Additionally, there was improved patient retention at OSU following transition clinic implementation (p = .037). Data demonstrating statistically significant improvement in care has not been reported for an epilepsy transition clinic. This study establishes that our novelapproach improves continuity of care in this at-risk population. Our clinic model also successfully transitioned and transferred medically complex patients, including those with pharmacoresistant and/or genetically mediated epilepsy. Additionally, this work suggests that this clinic structure has potential to foster the growth of associated adult epilepsy subspecialty practices. These findings are encouraging as they offer potential for improved health care in the youth and young adult epilepsy population.

Ideal models of good inpatient care for adults with intellectual disability: Lessons from England.

In recent years, a significant proportion of inpatient facilities for people with intellectual disabilities and/or autism has been de-commissioned in England, This has resulted in individuals with intellectual disabilities being sent to distant hospitals far away from their families and carers leading to challenges in follow-up, community care and interventions. The impact of de-institutionalisation, has often caused patient trauma, family distress and subsequent discharge difficulties. Not every individual with intellectual disabilities and/or autism requires inpatient care but inpatient care when needed has to be local, adequate and appropriate. To evaluate current evidence of utility of inpatient models for people with intellectual disabilities and outline best clinical practice. PubMed, CINAHL, EMBASE, Cochrane Library, Scopus, Web of Science were searched with key search terms. The search was conducted by the information specialist and identified abstracts screened further for inclusion criteria, methodological issues, and other appropriate characteristics. Twenty-three papers were included in the rapid review. Papers shortlisted had the inclusion criteria applied against the full text version independently by two reviewers. Disagreements regarding eligibility of studies was resolved by discussion and consensus within the project team. Key data related to in-patient models of care was extracted from the included papers, which included year of study, design, study objectives, target population, method/s tested, outcomes reported, country of study/studies, and results. Data extraction was performed by two reviewers and reviewed by the project team. From the review of services for people with intellectual disabilities, we came across four broad models/frameworks/approaches. Evidence on what worked for inpatient service provision tended to be based on models developed and implemented locally. We make recommendations for the best clinical practice and standards. Both clinical service providers and policymakers need to be aware of specific needs of individuals with intellectual disability and/or autism.

Novel Electronic Consultation for Sickle Cell Disease Inpatient Management

Sickle cell disease (SCD) is an inherited blood disorder that affects 100,000 persons in the US. Despite affecting a small percentage of the US population, health care costs for SCD are approximately 1.7 million for total lifetime cost mostly due to high healthcare utilization. Though outpatient comprehensive SCD centers reduce healthcare costs by decreasing acute visits, there has been little in the literature on optimizing inpatient SCD care and facilitating a successful transition back to outpatient care. Improving the transition between inpatient care and the outpatient provider may also reduce health care expenses. Current inpatient models of care for adults with SCD vary among hospital centers, but are generally a combination of hematology and oncology providers, internists, and/or SCD specialists. Similar to most hospital systems, our internal medicine resident teams and hospitalists provide most of the care for adults with SCD. The hematology consult team is only consulted for a small number of adults with SCD who have severe complications due to limited capacity. Prior to 2020, the discharge planning, transfusion guidance, and pain management for adults with SCD in the hospital was highly variable. To improve continuity of care, we developed a new inpatient model of care using electronic communication (e-consult) notes that encompass the important aspects of management (i.e. individualized care plan, etc.) for every patient admitted with SCD. At the time of admission, the SCD team receives an EMR-alert to initiate the consultation and does not require an order from the inpatient team. This inpatient model of care was also helpful during the COVID-19 pandemic when the hospital experienced a shortage of staff making it more difficult for the hematology consult services to participate in SCD care. We hypothesized that the e-consult service would increase the inpatient medical teams’ satisfaction level with care and improve discharge planning for adults admitted with SCD. Methods: We analyzed 1,282 inpatient visits during January 2019 to July 2021. The e-consult notes, written by a SCD specialist, provided recommendations on the following: electronic medical record review (hospital course, vital signs, and laboratories), outpatient treatment plans, best-practices from the national SCD guidelines, and discharge planning. E-consult notes were written beginning in April 2020. Inpatient provider teams were asked to complete surveys measuring satisfaction of the SCD management before (Jan 2019-Mar 2020) and after (Apr 2020-Jul 2021) the implementation of e-consults. Time to first discharge appointment, length of stay, and hospital readmission were obtained using the electronic medical record. We used ANOVA test to compare mean values between the two time periods. Results: There were a total of 106 providers who participated in the satisfaction survey, but three entries were incomplete. The majority of inpatient provider teams who responded were internal medicine (76%; 80/106). Only 61% (62/103) of the providers were familiar with the e-consult service. Among those familiar with the e-consult service, 79.6% (45/62) of the providers followed the recommendations of the e-consult service. Over 80% of the providers reported that e-consults were valuable to SCD care, promoted good quality of care, and resulted in an overall improvement in the care of SCD. Furthermore, provider satisfaction were significantly improved. The mean number of days between hospital discharge and outpatient follow up were also significantly lower than before the implementation of this service. The length of hospital stay was statistically higher for the post implementation period, however remained under the national average of hospitalizations for SCD. The hospital readmission rate was unchanged. Limitations: We are unable to capture hospital follow up that occurred at another institution due to patients being under another provider's care. Conclusion: Improving inpatient care for people with SCD is important. Due to insufficient SCD staff, new models of inpatient care are needed. The e-consult program initiated at UAB can significantly improve inpatient team satisfaction, inpatient SCD guidance, and facilitate timely discharge with an outpatient SCD provider. E-consult notes can be an acceptable tool to help optimize inpatient care when a formal inpatient SCD service does not exist due to limited SCD staff. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

"Here's What I Wish You Knew": A Qualitative Narrative Analysis of the Adolescent Sickle Cell Pain Experience

Background Bias, stigmatizing language, and social isolation are significant barriers to the optimal care of pain for adolescents and young adults (AYA) with sickle cell disease (SCD). Qualitative studies that include first-person narratives of SCD pain are underrepresented in outcomes research but provide valuable information for clinical education and community care models. Here, we present the interim analysis of an ongoing thematic research study that analyzes narrative experiences of AYA patients with SCD and their journeys- both in and out of the healthcare system- with chronic pain. Methods In this IRB-approved study, a single semi-structured interview is administered to patients ages 13-21 with sickle cell disease (Hemoglobin SS, SC, and SBeta0Thal genotypes) living in a mid-sized metropolitan center and receiving care at an academic teaching hospital. Patients are offered the opportunity to participate from inpatient units, ambulatory continuity clinics, and community advocacy groups. Interviews are conducted either in-person or remotely, recorded, transcribed, and independently checked for accuracy. The interview includes questions about coping with pain in medical and non-medical settings, interactions with the healthcare team, impacts of pain on social and community life, and opportunities to describe what patients wish family members, teachers, friends, and healthcare providers understood about living with SCD pain. Transcripts are analyzed for thematic coding by 2 independent coders using a deductive approach with latent textual analysis (Braun & Clarke, 2013). Codes are translated into themes by key-words-in-context and indigenous categorization methods (Ryan, 2011). Thematic coders are not members of the patients' clinical care teams, and patients do not provide interviews during acute pain crises. Results At the time of submission, 8 interviews were completed and analyzed. The median patient age was 17 years. Concordant coding revealed five primary themes: the relationship between acute and chronic pain, coping with rituals and cycles of care, the unpredictable nature of pain, navigating a biased healthcare system, and social isolation. The majority of patients detailed their experiences with intense, coexistent physical and emotional pain (6/8) that creates a pervasive sense of uncertainty and foreboding (4/8) in their lives. They described navigating a healthcare system that is difficult to understand, while experiencing doubts and dismissals of their pain from healthcare providers, particularly when making the transition to adult care (4/8). Lack of education and awareness about SCD in academic settings (5/8) and "missing out" on social milestones and norms (6/8) were cited as sources of isolation and emotional fatigue. Having a family member or community-based care advocate was viewed as a critical source of support within both the health system and community (4/8). Discussion and Future Directions This ongoing qualitative research study in adolescent and young adults with SCD provides narrative data about the lived experience of sickle cell pain from the patient perspective. Interim analysis suggests several locations in the care trajectory where reports of pain may be particularly vulnerable to bias: in healthcare settings for management of acute-onset pain crisis, in schools and other academic support settings where knowledge of SCD may be incomplete, and in the transition of care from pediatric to adult care models. Particularly during acute pain management and transition care experiences, patients describe the use of stigmatizing language- in conversation and in the electronic health record- that contribute to feelings of isolation, frustration, and emotional suffering. Results of this study are being used to inform community, pastoral, and school-based sickle cell education programs as well as medical education curricula aimed at reducing stigmatizing language. Results are also being used to develop standard criteria for sickle cell patient advocates, and to improve infrastructure for the integration of patient advocates into sickle cell care teams. Future research will measure the impact of patient participation in narrative research on clinical outcomes and attitudes toward engaging the healthcare system, both for routine care and potential SCD clinical research. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Improving Transition Care: A Transition Toolkit Implementation Project

This project involved developing an easy-to-use transition toolkit for clinics serving children and young adults with chronic illnesses who are transitioning from a pediatric model of care to an adult model of care. Got Transition’s 6 core elements served as a guiding framework for the toolkit, which was developed through an iterative process with substantial stakeholder input. The project was evaluated using a post–then survey and 3 open-ended questions. Large effect sizes (<0.8) were identified for all items evaluated. The transition toolkit was effective for implementing transition care in the participating clinics. Lessons learned through the implementation process are shared.

Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities.

Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed 'dual disability', is complex. It requires a family-centred approach, with collaboration among health, disability and social services and early planning. To describe carer perspectives of transition to adult care and the outcomes of a transition support intervention, Fearless, Tearless Transition, for adolescents with dual disabilities piloted at a tertiary children's hospital. Carers of adolescents with a dual disability were invited to complete a survey at the commencement of their participation in the Fearless, Tearless Transition model, and again at the conclusion of the project. Within this intervention, carers and adolescents were encouraged to attend dedicated transition clinics and participate in a shared care general practitioner (GP) and paediatrician process. One hundred and fifty-one carers of adolescents with dual disabilities were included in Fearless, Tearless Transition. Of this cohort, 138 adolescents and their carers received support in a dedicated transition clinic with 99 carers completing the initial survey at the commencement of the model. Eighty-two per cent of carers reported moderate to high levels of anxiety about transitioning from paediatric to adult care with 39% feeling 'unprepared' about transition. Eighty-one per cent reported having inadequate access to respite care with 47% reporting a lack of access to services in the community and 56% expressing dissatisfaction with their GPs. One hundred and two families participated in the shared care process with 80 GPs and 33 paediatricians. Twenty-two carers completed the second survey reporting a modest but significant improvement in preparedness for transition to adult care. This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early, centralized transition planning, consistent methods of assessing adolescent and carer needs and shared care.

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

Clinical profile and multidisciplinary needs of patients with neuromuscular disorders transitioning from paediatric to adult care

Transition in paediatric health care refers to the planned process of shifting to an adult model of care and is highly individualised, patient focussed and requires a coordinated effort from different health care professionals. Through this retrospective study, we describe the spectrum of neuromuscular diseases evaluated through a paediatric to adult neuromuscular transition program in a tertiary academic centre in Canada, and also the speciality supports needed for these patients. 126 patients were transitioned during the study period. The most common clinical diagnosis was muscle disease (44.4%), followed by neuropathy (27.8%), neuromuscular junction disorders (15.9%) and motor neuron disease (MND) (10.3%). The majority of cases were inherited neuromuscular disorders (66.6%); 58.3% had a genetically confirmed diagnosis. Cardiac and respiratory abnormalities were encountered in 8.7% and 27.7% and transitioning was required for 39.8% and 35.7% respectively. Scoliosis was seen in 30.2% of patients; 9.5% underwent spine surgery. Patients with MND had maximum requirements for self-care (46.2% of MND) and a mobility device for ambulation was required in 69.2% of MND. We observed a wide range of systemic issues requiring the services of endocrinology, gastroenterology, speech and language pathology and psychiatry. A multidisciplinary clinical care model may provide optimal care for patients transitioning from paediatric to adult care health systems.

Successful healthcare transition for youth with special healthcare needs is a team effort.

NPs care for persons across the age continuum and transitions commonly occur. Some are unexpected, like hospitalizations for acute illness or injury. Others are an expected consequence of growing up, like moving from pediatric to adult care models. Understanding the factors impacting healthcare transition is critical for successful outcomes.