Adult Team Research Articles

La transition de la pédiatrie à l’âge adulte : recommandations de prise en charge de la filière des maladies auto-immunes et auto-inflammatoires rares FAI2R

Autoimmune and autoinflammatory diseases (AIDs) are a heterogeneous group of diseases. They can occur in childhood and account for significant morbidity and mortality. Transitioning from pediatric to adult healthcare can be difficult for patients and their families. It can interfere with patient follow-up and management, and eventually lead to complications. Although recommendations exist for the successful transition of patients with chronic diseases, few are specifically adapted to children and adults with AIDs (Suris et al., 2015–Solau-Gervais, 2012). The French working group on transition of the rare autoimmune and autoinflammatory diseases presents its reflections and recommendations for a successful transition. Preparation for transition should start early. Its goals are to empower adolescents by providing them with the knowledge to manage their own care, respond appropriately to changes in their condition, and evolve within the adult healthcare system. This requires the active participation of the patient, his or her family, as well as the pediatric and adult medical teams. The transition process involves multidisciplinary care and dedicated therapeutic education programs. Finally, the identification of medical specialists by region, trained in rare AIDs and accompanied by expert patients, may improve the management of patients with rare AIDs from adolescence to adulthood.

Remembering Friends: Exploring the Bereavement Support Needs of Teenagers and Young Adults Experiencing the Death of a Friend in the Cancer Setting.

Introduction: Bereavement is often difficult for adolescents to cope with particularly when the death experienced is a friend due to cancer, while the young person is undergoing their own cancer treatment. There is limited research on this specific type of bereavement. The Teenage & Young Adult (TYA) team at The Christie in Manchester recognized the complicated nature of bereavement in this cohort and identified the need to research this area further. Methods: A mixed method research strategy was used to explore bereavement experiences of young people, gathering qualitative and quantitative data from a TYA bereavement advisory group and an online survey. Inductive thematic analysis was used to establish themes from the qualitative data. Results: Data from the advisory group and survey elicited four main themes: prevalence and emotional impact; maintaining and valuing friendships; communication and conversations; and support and space to grieve. Young people experienced multiple exposures to death, long-term emotional reactions, reflections on mortality, and fears of making new friendships. How a death was communicated was difficult, and bereavement support was lacking. Young people want a formalized bereavement service, provided by specially trained staff, and their own "space" to grieve. Conclusion: Young people in this study highlight the complicated nature of bereavement when their friend dies, while undergoing their own cancer treatment. Bereavement support is essential at the time of a death. TYA services bring young people together for peer support so more emphasis needs to be focused on providing bereavement support to reduce the risk of young people experiencing long-term psychological difficulties and negative outcomes later in life.

Factors predicting staff interest in conducting research in learning disability teams

Research in learning disability teams is crucial to ensure effective and high-quality care. This article details a service evaluation that aimed to assess the relationship between staff interest and staff involvement in research. It also aimed to investigate whether staff interest can be predicted by three other factors that affect engagement in research – support, confidence and time. A ten-item survey about research attitudes was distributed to 154 staff members in five adult learning disability teams based in the community in one NHS trust, and 80 of these staff members responded. An exploratory groupwise t-test found that staff interest in conducting research is significantly related to staff involvement in research, with those involved reporting more interest. Regression modelling found that confidence was the sole predictor of interest in research; therefore, future studies could examine the role of staff confidence in developing interest in research. Further studies are required to understand how to increase research activity in learning disability services.

An audit to review the extent to which appropriate preconception advice is given to women being discharged from mental health wards on psychotropic medication, in line with NICE guidelines

AimsThe release of the Cumberlege Report in 2020 served as a reminder of the importance of informed consent for women when they are started on treatment that may affect their fertility or future pregnancies.Our aim was to evaluate current performance with regards to advice given to women of childbearing age around contraception, impacts of psychotropic medication on fertility and future pregnancies, and availability of preconception counselling.MethodStandard identified as NICE Guideline 192 (Antenatal and Postnatal Mental Health), sections 1.2 and 1.4.60 female inpatients were selected by looking at the most recent discharges prior to 03/11/2020 from 3 local acute adult wards. All females aged between 18 and 48 years were included.Electronic notes were reviewed for each patient. The discharge summary and last four ward round entries were reviewed, then key-word search of the patients’ records was performed using the terms “pregnan*”, “conception”, “contraception”, and “fertility”.The following information for each patient was documented in a spreadsheet:Discharge medicationIs there any discussion or advice around contraception?Have women taking antipsychotic medication been given advice regarding the possible impact on fertility?Has the potential impact of psychotropic medication on a future pregnancy been discussed?Has advice been given about the availability of preconception counselling should they plan a pregnancy in future?ResultOn discharge, a total of 33 women were taking one or more antipsychotics and 14 were prescribed a benzodiazepine. 24 women were discharged with antidepressants and 10 women were using a mood stabilising agent. 8 women were discharged without any psychotropic medication.Overall, 4 women received advice about contraception, and a further 8 women were already using contraception. The impact of taking an antipsychotic on fertility was not discussed with any patient. No women were advised about pre-conception counselling. The impact of taking psychotropic medication on a future pregnancy was discussed with one woman.ConclusionCurrent practice falls well below the standard set by NICE. Opportunities to inform women are being missed, and this has implications for the wellbeing of the patient and, potentially, future children.Action plan;Present findings at teaching.Deliver local teaching covering preconception counselling and the role of adult mental health teams when managing women of childbearing age.Produce a poster for inpatients wards and an information leaflet for women of childbearing age to aid with discussions.Create a poster for doctors’ offices to remind about NICE standards and documentation.Re-audit in 6 months.

Service user experience of remote consultations during COVID-19 in an older adult community mental health setting

AimsThe COVID-19 pandemic has had a significant effect on our ability to communicate face-to-face with patients freely. Similar to other medical specialities and general practice (1), to continue providing a service for our service users, we employed other means of communication including telephone and video consultations (although face-to-face consultations were available for high clinical concern and/or identified risk). We set out to explore the acceptability of remote consultation for service users of an older adult (>65 years) Community Mental Health Team (CMHT).Reference: BMJ 2020;371:m3945MethodA total of 34 service users were selected randomly from the CMHT caseload (9% of total 372 caseload). 4 clinicians were involved in collecting data between July and October 2020. We used our trust's (East London Foundation Trust) standard questionnaire on patient satisfaction and contacted individuals by telephone to complete the survey.ResultFor both questions of ‘I felt listened to by the team’ and ‘I feel I have been given enough information regarding my care’ 17 (50%) responders ‘agreed’ with this statement and an additional 13 (38%) ‘strongly agreed’ (total of 88%). For the statement ‘I feel involved in decisions about my care’ 16 (47%) responders ‘agreed’ and a further 11 (32%) responders ‘strongly agreed’ with this statement. The statement ‘The professionals involved in my care talk to each other and we all work as a team’ had 15 (44%) responders ‘agree’ and 13 (38%) responders ‘strongly agree’. When asked ‘If you experienced telephone/video sessions, were these helpful?’ 31 responders said ‘yes’.ConclusionOverall most responders agreed or strongly agreed that they felt listened to, were given enough information about their care, felt involved in decisions about their care and that they worked as a team with the professionals involved in their care. 91% of responders felt that the video/telephone sessions had been helpful. These data have provided reassurance that telemedicine methods were a useful substitute for face-to-face consultations during the early stages of the pandemic. However this was a small scale study. This study cannot tell us about the experience after the initial 6 months of the pandemic, how often it would be optimal for people have face to face reviews, or whether satisfaction with telemedicine altered over a longer period. We were also not able to tell whether the experience varied for those who had less robust and longstanding relationships with their clinicians.

Characterising a cohort of patients referred to a liaison psychiatry service from the Intensive Care Unit

AimsThis is descriptive study of a cohort of patients referred to a liaison psychiatry service from the intensive care department of a major London teaching hospital and trauma centre. The objective was to characterise key patterns in reasons for referral, nature of input, and gain a general sense of the workload. The rationale for collating this information was the consideration to developing a specific intensive care liaison service given the increasing evidence about the cognitive and mental health impacts of post-intensive care syndrome and the need for a coordinated management approach between stakeholders.MethodA cohort of 80 patients referred to liaison psychiatry service over a 6-month period from May to October 2020 was used. Descriptive statistics were used to characterise the patient's age, referring ward, reason for admission and referral, nature of input, number of reviews, previous engagement with mental health services, whether substance abuse or self-harm were related to the admission, and the destination upon discharge.ResultThe age range of patients at point of referral was 25-80 years. For 25% of patients, this admission marked their first engagement with secondary mental health services and for around 50%, not only was a new diagnosis given during the admission, but there was no recorded history of any psychiatric diagnoses. Around 10% of patients were referred for management of delirium. Anxiety disorder accounted for the greatest proportion of diagnoses upon discharge, at 22%. There was much variability in the number of intensive care ward reviews carried out, ranging from one to over 10.In 24%, self-harm led to presentation and 18% had comorbid substance misuse. Medication review was the single most common reason for referral in 13%, whereas requests for talking therapy and capacity assessments were 5% and 2% respectively. The vast majority of patients required a level of ongoing psychiatric input warranting community involvement or admission.ConclusionThis cohort often required detailed work-ups, new diagnoses and a high level of subsequent psychiatric management following discharge from hospital. The wide age range of patients meant that both working age and older adult liaison teams were involved in assessing referrals. Consideration could be given to a specific intensive-care liaison service due to the workload and complexity of needs, as well as the increasing awareness of the need for family support and early inclusion both for their benefit and that of the patient, particularly when the proportion of new diagnoses in this cohort is considered.

Transfer and transition referrals of patients with intellectual disability from children's services to adult community learning disability teams

AimsThe audit aimed to assess if patients under the care of children's services in Wessex were transferred at the appropriate age and whether transition referrals to Community Learning Disability teams (CTLD) occurred timely. It also aimed to look at how many patients underwent transitions in a three month period, and if their transition support plan (TSP) was completed. A transition support plan should include chronological information on psychopharmacology, psychotherapy, and social support measures. Patients should be referred between the ages of 17–19 but require a justification after 18 years of age.MethodThe BI team was contacted to provide all IDs for patients referred within a three month period between the ages of 17–19. The BI team provided 42 patients with their ID. Patients discharged from services within a short time span were excluded for the following reason: inappropriate referral (9pts), discharged after 1st assessment (6pts), internal discussion (6pts), only referred to Autism team (4pts), moved out of area (1pts). From the initial 42 patients, 16 patients were analysed using the collection tool.Result4/16 had a TSP, and only two had a complete TSP and transitioned in another trust and were inter-team referrals.CAMHS services referred 1/16 patients.Psychotropic medication was prescribed to 12/16 prior to or on time of referral, but only two patients had a complete psychotropic medication history.8/16 patients' referral was commenced prior to their 18th birthday, and no information was provided for delay in transfer.Health records did mention psychotherapy, but apart from 2/16 TSP records, no additional information was available on the modality.ConclusionPatients with Intellectual Disability face challenges when transferring from children to adult services. Insufficient referral information may have a detrimental impact on patients wellbeing and long-term care.Access to a patient's chronological journey through the different children's services allows Adult CTLD health professionals to provide effective care. Historical psycho-social and pharmacological interventions provide a reference point for future interventions.Concerns included: limited information on most TSP regarding psycho-social and psychotropic treatments, lack of access to CAMHS/CHYPS paperwork and ineffective inter-trust communication for transition patients.This project highlighted the average number of transition cases in 3 months. It led to changes to the transition pathway, as awareness was raised in trust and CCG meetings to improve patient outcome. CTLD created the new role of transition facilitators to support children's services. They sit in meetings before patients transition referrals.

A Pilot Project: Improving the Transition Care Process for Neurosurgical Adolescent Patients with Indwelling Shunts to Adult Care

BackgroundA formal transition program has not been described for neurosurgical adolescent patients with an indwelling shunt device. Transitioning from pediatric neurosurgical care to adult care without transition guidance has caused abrupt transfer of care at this institution. The goal of this pilot transition program was to help patients and caregivers feel informed and prepared for transition. MethodsThe Got Transition®, Six Core Elements of Transition, were used to create this program. Both a policy and a registry to track and monitor patients were created. A validated questionnaire for transition readiness was measured. Education was provided based on the results of the questionnaire to prepare the adolescent for transfer of care. A smartphone application was used to promote health care independence. Transfer to adult neurosurgical care included hand-off between the pediatric and adult teams, child life and social work involvement, and scheduled follow up with an adult neurosurgical provider. FindingsAll patients 14 to 18 years with indwelling shunts were enrolled in the pilot program. Eight patients completed a baseline transition readiness assessment, received education and anticipatory guidance, and downloaded the smartphone application. At the end of the six month pilot, three patients were successfully transferred to adult care. DiscussionThe integration of a transition readiness questionnaire and smart phone application during this pilot program was feasible and continues to be used at this institution. Adolescent patients with shunts require gradual and carefully planned transition services.

An Adapted Model for Transition to Adult Care in Young Adults with Prader-Willi Syndrome.

Background: Prader–Willi syndrome (PWS) is a rare, neurodevelopmental, genetic disease caused by the lack of expression of paternal genes in chromosome 15. The typical characteristics, including hyperphagia, muscular hypotonia, abnormal body composition, hormonal deficiencies, cognitive disabilities, and behavioral problems, appear or worsen in young adults, and the development of comorbidities increases. The transition of care of young adults with PWS is a challenge due to the complexity of the disease and the vulnerability of the patients. Multidisciplinary transition clinics are optimal but difficult to implement in clinics with few transitions. Methods: The description of transition care meetings was limited to the pediatric and adult endocrinologists and nurses. The presentation of our checklist was developed to optimize the organization of the transition of young adults with PWS. Results: Two to four patients with PWS are transferred to adult care every year in our hospital. Transition with the adapted program was more comfortable for patients and identification of the individual patient’s comorbidities and special needs could clearly be addressed. Conclusions: In smaller settings, an adapted model including a proper introduction and presentation of the adult team and clinic, careful information about comorbidities and special needs, together with a checklist can optimize the transition of care to adult care.

Stepping up: retention in HIV care within an integrated health care transition program

ABSTRACT Strategies are needed to optimize HIV health care transition (HCT). We describe HCT outcomes within the University of Maryland STEP Program, which is built upon integration of an adult HIV provider and navigator into the pediatric clinic, and coordinated collaboration between pediatric and adult HIV multi-disciplinary care teams. These outcomes were compared to a historical institutional HCT cohort (N = 50) which attempted transition in an earlier time period (2004–2012). Fifty-eight patients were enrolled during the study period, and 34 attempted HCT. In total, 84 patients underwent attempted HCT. In the STEP cohort, linkage to adult care was 94% and 12 month retention in adult care (95%) was statistically higher compared to the historical cohort. Rates of viral suppression did not differ pre- and post-HCT among STEP Program patients. These results support the concept of an integrated pediatric and adult HIV HCT model though the ability to achieve sustainable HCT success will require further study.

‘The silent intermediary’: a co-authored exploration of a client’s experience of art psychotherapy for C-PTSD

ABSTRACT Background This article presents a client’s (art therapee’s) conceptualisation of his experience of art psychotherapy for symptoms of complex post-traumatic stress disorder (C-PTSD). Context He was receiving treatment through a community adult mental health team within the UK National Health Service. Approach The art therapee wrote about his art psychotherapy experience, and then he and his art psychotherapist identified key themes. They related his account to art psychotherapy theory and evidence and drew out implications of his experience for art psychotherapy research. Outcomes/Conclusions The art therapee found that an art psychotherapy approach was helpful in these ways: having control; expressing without words; distancing from trauma; being creative and playful. He identified some aspects of the art psychotherapy which seem to be under-represented in art psychotherapy literature: the importance of the therapist’s acceptance of the client’s artwork for building trust; the way in which artmaking bypasses the fear of ‘telling’ about past abuse; and the therapeutic value of creativity and play for accessing positive aspects of the child self. Implications for research It would be valuable to gain information from other clients with C-PTSD about their experiences of art psychotherapy. Research into the identified under-explored aspects of art psychotherapy practice, the use of artmaking for C-PTSD symptom management and how artmaking can be integrated within other approaches to C-PTSD treatment would be useful. Plain-language summary This article describes how a client (art therapee) with symptoms of complex post-traumatic stress disorder (C-PTSD) experienced art psychotherapy. The art therapee received therapy through a UK National Health Service community adult mental health team. The therapy sessions were on a weekly basis over an 18-month period. The art therapee wrote about his art psychotherapy experience, and then he and his art psychotherapist identified some themes. They related his account to art psychotherapy theory and evidence and drew out implications of his experience for art psychotherapy research. The art therapee found that an art psychotherapy approach was helpful in four main ways. It helped him to feel in control of the therapeutic process, and enabled him to express experiences of past abuse without having to use words. It gave him a sense of distance from his traumatic experiences. Finally, it helped him to connect with his creativity. He identified some particular aspects of his experience which seem to be under-represented in art psychotherapy literature: the importance of the therapist’s acceptance of the client’s artwork for building trust; the way in which artmaking bypasses the fear of ‘telling’ about past abuse; and how creativity and playfulness in art psychotherapy sessions can enable a more positive view of oneself as a child. The authors consider that it would be valuable to gain information from other clients with C-PTSD about their experiences of art psychotherapy and to undertake research into those aspects of the client’s experience which appear not to have been explored significantly so far. Research into how artmaking can help relieve C-PTSD symptoms and how artmaking might be used within other approaches to C-PTSD treatment would also be useful.

Diagnosing autistic spectrum disorder in adult community mental health teams

This paper describes the process of incorporating Autism Spectrum Disorder (ASD) diagnostic assessments within local community mental health teams as a response to the long waiting times for diagnostic assessment from specialist services. It reflects upon the feasibility, acceptability and potential therapeutic value of this initiative.

A98 DEFINING TRANSITION SUCCESS ACCORDING TO YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE

Abstract Background The incidence of childhood-onset inflammatory bowel disease (IBD) diagnoses is increasing in Canada; therefore, more patients will need to transition from pediatric into adult care. The literature on transition in IBD patients has focused mainly on preparation and while transition success is often referenced, it is not clearly defined. Prior research on IBD transition success has only focused on the perspectives of the health care providers. Taking into consideration that transition is a process that greatly relies on patient involvement, patient perspectives should be represented in defining its success. Aims The primary aim is to understand patients’ perspectives on the outcomes that characterize a successful transition from pediatric to adult care. Methods This study paired a theoretical position of naturalistic inquiry with the method of qualitative description. Purposive sampling was used to recruit patients from IBD clinics at the University of Alberta and the University of Calgary. Inclusion criteria included transition within the last two years, diagnoses with IBD for at least a year prior to transitioning, and absence of comorbidities. Virtual semi-structured interviews were conducted using an established interview guide. Interviews were transcribed verbatim and then analyzed concurrently with data collection by latent content analysis using NVivo computer software. Participant recruitment and data analysis continued until no further themes emerged from the data, which signaled that thematic saturation was achieved. Results Thematic saturation was achieved after 17 interviews. Among participants, 58.8% were female; 47% had a diagnosis of Crohn’s, 47% of ulcerative colitis, and one individual was diagnosed with both. The median age at diagnosis was 15 years (IQR, 3.5). The majority (94%) of participants viewed their transition as being successful. Overall, the major themes that emerged from the data were: 1. relationship with one’s adult care team, characterized predominantly as the patient being comfortable with their new team; 2. health outcomes, characterized by disease remaining stable, and medication adherence; 3. independence in one’s care, characterized by making and attending appointments on their own, asking questions and in general having an awareness about your health and disease; 4. care stability, characterized by no drop off in care, and regular contact and follow up by their provider. Conclusions Young adults with IBD define pediatric transition success in four themes: relationship with care team, health outcomes, independence in one’s care, and care stability. Through understanding what transition success looks like from the patients’ perspectives, health care providers can help patients achieve success as they define it. Funding Agencies None

Reflecting on transitions between Forensic CAMHS and the Adult Forensic Community Team

Reflecting on transitions between Forensic CAMHS and the Adult Forensic Community Team

COVID-19-related prescribing challenge in intellectual disability.

The COVID-19 pandemic and associated restrictions are expected to affect the mental health of the population, especially people with intellectual disability and/or autism spectrum disorder, because of a variety of biological and psychosocial reasons. This study aimed to estimate if COVID-19 restrictions are associated with a change in number of total consultations carried out by psychiatrists and prescription of psychotropic medication in people with intellectual disability and/or autism spectrum disorder, within a community intellectual disability service. A quantitative observational study was conducted, involving retrospective and prospective data collection before and during lockdown. Data was collected on a spreadsheet and emailed to all psychiatrists working within the Coventry and Warwickshire Partnership NHS Trust-wide community intellectual disability service. Variables included total consultations, medication interventions, types of medications used, multidisciplinary team input and clinical reasons for medication interventions. Data was analysed separately for child and adolescent mental health services (CAMHS) and adult intellectual disability teams, and for the whole service. During the lockdown period, total consultations in the community intellectual disability service increased by 19 per week and medication interventions increased by two per week. Multidisciplinary team input increased in CAMHS from 0.17 to 0.71 per week and in adult intellectual disability from 5.7 to 6.5 per week. Hypnotics and benzodiazepines were the most commonly prescribed psychotropic medications during the lockdown period. COVID-19-related lockdown resulted in an increase in medication interventions, total consultations and involvement of multidisciplinary teams to manage mental health and behavioural issues in people with intellectual disability and/or autism spectrum disorder.

The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study.

Autism is a developmental disability that affects how individuals experience the world. Each Autistic individual experiences Autism in their own way, meaning that the level and type of assistance in their everyday lives vary widely. A shortage of programs and services tailored to Autistic adults exists worldwide, and the current gap between needs and services is likely to worsen as the growing number of Autistic children being diagnosed reach adulthood. This research sought to determine priorities in terms of health and social service needs of Autistic adults and to examine factors influencing whether or not these services were being received. Through a multistakeholder approach, researchers and Autistic adults codeveloped the Maritime Provinces Needs Assessment Survey and collected data from August 2017 to February 2018. The research team engaged Autistic adult partners, including one that was project colead, as full partners. We recruited survey respondents from three Maritime Provinces using mainly social media and local Autism networks. We used Poisson regression analyses to identify factors most strongly associated with the number of unmet needs reported by Autistic adults. In total, 260 respondents completed the needs assessment survey: 77 self-reporting Autistic adults (aged 19-55 years), 87 Autistic adults (aged 18-63 years) whose information was provided by a proxy respondent, and 96 professionals working in the field of Autism. Autistic adults reported a mean of 2.1 ± 1.5 (self-reported) and 2.8 ± 2.1 (proxy-reported) services wanted but not received. The number of mental health and neurodevelopmental conditions, unemployment, and perception that government support is insufficient were positively related to unmet needs. Overall, the results of this study highlight considerable gaps among the support needs of Autistic adults. The identification of factors associated with a higher number of unmet needs helps identify potential subgroups requiring more attention. Why was this study done?: There is currently a shortage of programs and services for Autistic adults. Little is known about which services are most important to Autistic adults and which factors are associated with not receiving them.What was the purpose of this study?: Our goals were (1) to determine the service need priorities of Autistic adults and (2) to examine factors associated with unmet needs.What did the researchers do?: The researchers invited health professionals, service providers, policy makers, Autism advocates, as well as Autistic adults and caregivers of Autistic adults to participate as part of the project team. In the early phases of the project, we named an Autistic adult colead of the project. In doing so, we acknowledged that conducting relevant research on the Autistic adult community implies not only hearing their voices and concerns, but also providing an opportunity for equal say on the research itself.We adapted previously used surveys to align them with our objectives of focusing only on Autistic adults. We launched the survey online and promoted it using various media and community channels, many of them direct suggestions from Autistic adult team members. We made paper copies available and provided a phone number for those who needed support filling out the survey.What were the results of the study?: More than 25% of Autistic adults identified 12 different services as priority needs.Autistic adults who (1) reported more mental health and neurodevelopmental conditions, (2) perceived their mental health as poor, or (3) felt that government support was insufficient were at greater risk of having unmet needs.What do these findings add to what was already known?: Similar to previous studies, we found that the service needs of Autistic adults are varied, and that many are not receiving the services they consider a priority. Our study also went one step further by identifying factors that are associated with a higher number of unmet needs.What are potential weaknesses in the study?: Our sample does not necessarily reflect the Autistic adult community as a whole, since we were unable to guarantee that hard-to-reach segments had access to our survey. In addition, we are unable to know how our results may change over time, as our survey was filled out on one occasion only. Finally, we did not measure Autistic traits and therefore are unable to estimate how different types of traits are associated with certain needs.How will these findings help autistic adults now or in the future?: Our results may help bring attention to subgroups of Autistic adults who need more help receiving the services they require.

Implementing a Transition Program from Paediatric to Adult Services in Phenylketonuria: Results After Two Years of Follow-Up with an Adult Team.

We aimed to report the implementation of a phenylketonuria (PKU) transition program and study the effects of follow-up with an adult team on metabolic control, adherence, and loss of follow-up. Fifty-five PKU patients were analysed in the study periods (SP): 2 years before (SP1) and after the beginning of adult care (SP2). Retrospective data on metabolic control and number of clinic appointments were collected for each SP, and protein intakes were analysed. In SP2, three patients (6%) were lost to follow-up. There was a small but statistically significant increase in median number of annual blood spots from SP1 to SP2: 11 (7–15) vs. 14 (7–20); p = 0.002. Mean ± SD of median blood Phe remained stable (525 ± 248 µmol/L vs. 552 ± 225 µmol/L; p = 0.100); median % of blood Phe < 480 µmol/L decreased (51 (4–96)% vs. 37 (5–85)%; p = 0.041) and median number of clinic appointments increased from SP1 to SP2: (5 (4–6) vs. 11 (8–13); p < 0.001). No significant differences were found regarding any parameter of protein intake. Our results suggest that the implementation of an adult service was successful as impact on metabolic control was limited and attendance remained high. Continuous dietetic care likely contributed to these results by keeping patients in follow-up and committed to treatment.

Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey.

Inherited Metabolic Diseases (IMDs) are rare diseases caused by genetic defects in biochemical pathways. Earlier diagnosis and advances in treatment have improved the life expectancy of IMD patients over the last decades, with the majority of patients now surviving beyond the age of 20. This has created a new challenge: as they grow up, the care of IMD patients' needs to be transferred from metabolic pediatricians to metabolic physicians specialized in treating adults, through a process called “transition.” The purpose of this study was to assess how this transition is managed in Europe: a survey was sent to all 77 centers of the European Reference Network for Hereditary Metabolic Disorders (MetabERN) to collect information and to identify unmet needs regarding the transition process. Data was collected from 63/77 (81%) healthcare providers (HCPs) from 20 EU countries. Responders were mostly metabolic pediatricians; of these, only ~40% have received appropriate training in health issues of adolescent metabolic patients. In most centers (~67%) there is no designated transition coordinator. About 50% of centers provide a written individualized transition protocol, which is standardized in just ~20% of cases. In 77% of centers, pediatricians share a medical summary, transition letter and emergency plan with the adult team and the patient. According to our responders, 11% of patients remain under pediatric care throughout their life. The main challenges identified by HCPs in managing transition are lack of time and shortage of adult metabolic physician positions, while the implementations that are most required for a successful transition include: medical staff dedicated to transition, a transition coordinator, and specific metabolic training for adult physicians. Our study shows that the transition process of IMD patients in Europe is far from standardized and in most cases is inadequate or non-existent. A transition coordinator to facilitate collaboration between the pediatric and adult healthcare teams should be central to any transition program. Standardized operating procedures, together with adequate financial resources and specific training for adult physicians focused on IMDs are the key aspects that must be improved in the rare metabolic field to establish successful transition processes in Europe.

The Need for Manual Skills in an Automated World to Obtain Timely Blood Pressures in Trauma Patients.

Obtaining the first blood pressure (BP) during adult trauma team activations was often delayed. A review of patient charts revealed that the average time to first documented BP was 6.6 minutes when using an automatic BP cuff. The purpose was to determine whether taking the initial BP using a manual cuff decreases the time it takes to obtain the first BP. The Iowa Model Revised was used as the framework for this project. An algorithm was developed, and staff were educated and validated on their ability to obtain manual BPs. A 2-month practice change pilot was launched on adult full and partial trauma team activations. It was determined that taking a BP manually during adult trauma resuscitations was more efficient, allowing for earlier determination of patient status. Obtaining the initial BP manually was 54% more timely and led to an evidence-based practice change.

When Pediatric Hospitalists Took Care of Adults During the COVID-19 Pandemic.

In April 2020, the coronavirus disease 2019 (COVID-19) pandemic raged through our hospital system in Connecticut.1 Medical teams for adult patients mobilized their staff and units for the incessant surge. Patient volume and acuity on the adult units began to rise amid the uncertainty of personal protective equipment (PPE) supplies, fear of a formidable impact, and potential depletion of the clinical workforce. In preparation, the pediatrics department chair of our children’s hospital within a larger academic medical center asked for volunteers to help the adult teams. The pediatric wards were strangely quiet as patients and families stayed away from the hospital and elective surgeries were canceled. In comparison, admissions to adult units in our hospital continued to rise exponentially (3 cases of COVID-19 on March 15 and 354 on April 9), further displaying the disproportionate impact of the pandemic on adults. Because pediatric hospitalizations to COVID-19 remained low and the demand for beds for hospitalized adults continued to rise, we initially gave two of our pediatric units to internal medicine clinician teams for adult admissions. Along with more hospitalized patients, the need for more clinicians to care for patients became more apparent. We heard that our pediatric critical care and pediatric emergency department faculty were helping to staff with adult medical ICUs. We knew that would be us soon and began work to brush up on our internal medicine skills.2 Instead of waiting to be asked, we decided proactively to offer our services to the internal medicine department as a team of pediatric nurses, pediatric housestaff, and pediatric hospitalists under the guidance of medicine-pediatrics hospitalists and medicine-pediatrics housestaff. Shortly, we were deployed to open a new adult COVID-19 …