Transition of care from paediatric to adult services in cardiology.
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ABSTRACT:
SUBMITTER: Hudsmith LE
PROVIDER: S-EPMC2083236 | biostudies-literature | 2007 Oct
REPOSITORIES: biostudies-literature
Publications
Transition of care from paediatric to adult services in cardiology.
Archives of disease in childhood 20071001 10
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Project description:Mucopolysaccharidoses (MPS) are rare disorders associated with enzyme deficiencies, resulting in glycosaminoglycan (GAG) accumulation in multiple organ systems. As patients increasingly survive to adulthood, the need for a smooth transition into adult care is essential. Using case studies, we outline strategies and highlight the challenges of transition, illustrating practical solutions that may be used to optimise the transition process for patients with MPS disorders. Seven MPS case studies were provided by four European inherited metabolic disease centres; six of these patients transferred to an adult care setting and the final patient remained under paediatric care. Of the patients who transferred, age at the start of transition ranged between 14 and 18 years (age at transfer ranged from 16 to 19 years). While there were some shared features of transition strategies, they varied in duration, the healthcare professionals involved and the management of adult patients with MPS. Challenges included complex symptoms, patients' unwillingness to attend appointments with unfamiliar team members and attachment to paediatricians. Challenges were resolved by starting transition at an early age, educating patients and families, and providing regular communication with and reassurance to the patient and family. Sufficient time should be provided to allow patients to understand their responsibilities in the adult care setting while feeling assured of continued support from healthcare professionals. The involvement of a coordinated multidisciplinary team with expertise in MPS is also key. Overall, transition strategies must be comprehensive and individualised to patients' needs.
| S-EPMC6819742 | biostudies-literature
Project description:BackgroundTransition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths.MethodsSemi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing.Results54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy).Discussion and conclusionThe flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.
| S-EPMC11000676 | biostudies-literature
Project description:BackgroundThe optimal form of health care delivery for paediatric to adult inflammatory bowel disease transition of care is unknown. The primary purpose of this study was to establish current standard of care across Canada among adult gastroenterologists.MethodsAdult gastroenterologists interested in transition care were identified. Twenty-five anonymous surveys and 17 semistructured interviews representing 9 adult gastroenterology centers across 6 provinces were completed. Questions focused on the transition process, referral practices, information transfer and access to multidisciplinary resources. The need for expert guidance and transition-related quality indicators were identified. The interviews were audio-recorded, transcribed and coded in duplicate for qualitative thematic analysis.ResultsTransition practices included the following: transition clinic (n = 4) versus direct transfer (n = 5). Most transition patients were referred to academic centers. Transfer volume per center ranged from 12 to 100 per year. Transfer of information was optimized with shared electronic medical record and comprehensive referral package. The majority of the programs lacked consistent access to a multidisciplinary team. The strongest attributes related to health care provider interest in transition and complete information transfer. Areas for improvement included increased resource allocation: financial, logistical and personnel. All agreed that a consensus-based guidfmeline for adult phase of transition would be beneficial. Potential quality indicators included adherence to care, depression/anxiety scores and patient knowledge.ConclusionsThis Canadian study of adult gastroenterologists revealed that while practice patterns vary, most agree that a transition clinic with access to multidisciplinary resources would be beneficial. A consensus-based guideline and quality indicators to assess performance may standardize the adult phase of transition and optimize outcomes.
| S-EPMC7678734 | biostudies-literature
Project description:BACKGROUND:The paradigm of cystic fibrosis (CF) care has changed as effective therapies extend the lives of patients well into adulthood. Preparing for and maintaining high quality CF care into the adult healthcare setting is critical for prolonged survival. Unfortunately, this transfer process from the paediatric to the adult CF centre is met with a variety of challenges. OBJECTIVE AND METHODS:The objective of this quality improvement (QI) project was to develop, implement and evaluate a theory-based programme for transition from paediatric to adult CF care. In a multi-phase process, the paediatric and adult programmes developed a transition curriculum, addressed care standards and standardised patient transfer protocols. We evaluated the impact of this process through staff surveys, review of field notes from QI meetings, tracking transfers and responses of patients to the Transition Readiness Assessment Questionnaire (TRAQ) at the start of the programme and 18 months after initiation. RESULTS:The collaboration between the paediatric and adult teams continued through quarterly meetings over the past 4 years. This has provided a forum that sustained our transition programme, harmonised care across CF centres and addressed other needs of our CF centre. Discussion of transition with families in the paediatric centre increased twofold (35% to 73% p<0.001), and resulted in a trend towards improved patient TRAQ self-advocacy scores and decreased in-hospital transfer. CONCLUSIONS:We successfully created a curriculum and process for transition from paediatric to adult CF care at our centres. This collaboration shapes the communication between our paediatric and adult CF care teams and enables ongoing feedback among patients, families and providers. The impact of our transition programme on long-term patient morbidity will require future evaluation.
| S-EPMC4449274 | biostudies-literature
Project description:BackgroundEconomic evaluations that include the patient perspective often base their estimates of patient time and travel costs on data collected at a single point in time. This, however, may be inaccurate if the costs of accessing care change substantially over time, as may be the case for young people in transition from paediatric to adult health services.AimsThe aim of this study was to explore the differences in these time and travel costs between two data collection points for young individuals in transition between health care services, and thus to provide an insight of whether such costs should be collected more than once.MethodsDescriptive statistics and regression modelling were used to estimate the average difference in costs between the two points of data collection, as well as the potential drivers of those cost differences.ResultsWe found a small difference in costs between the two time points, equal to -£45.78 [95% CI: - 89.70 to - 1.86]. The results were largely driven by changes in the unit cost of visits and in the number of attendances.ConclusionsA simple and common assumption that patient costs could be collected at a single time point cannot be made in the context of our study. When deciding on the frequency of elicitation of patient costs, future studies should consider the relative impacts of additional data collection on the estimates of efficiency, inequalities and resource implications for collecting new data.
| S-EPMC7981799 | biostudies-literature
Project description:BackgroundThere are currently no models for the transition of patients with metabolic bone diseases (MBDs) from paediatric to adult care. The aim of this project was to analyse information on the experience of physicians in the transition of these patients in Spain, and to draw up consensus recommendations with the specialists involved in their treatment and follow-up.MethodsThe project was carried out by a group of experts in MBDs and included a systematic review of the literature for the identification of critical points in the transition process. This was used to develop a questionnaire with a total of 48 questions that would determine the degree of consensus on: (a) the rationale for a transition programme and the optimal time for the patient to start the transition process; (b) transition models and plans; (c) the information that should be specified in the transition plan; and (d) the documentation to be created and the training required. Recommendations and a practical algorithm were developed using the findings. The project was endorsed by eight scientific societies.ResultsA total of 86 physicians from 53 Spanish hospitals participated. Consensus was reached on 45 of the 48 statements. There was no agreement that the age of 12 years was an appropriate and feasible point at which to initiate the transition in patients with MBD, nor that a gradual transition model could reasonably be implemented in their own hospital. According to the participants, the main barriers for successful transition in Spain today are lack of resources and lack of coordination between paediatric and adult units.ConclusionsThe TEAM Project gives an overview of the transition of paediatric MBD patients to adult care in Spain and provides practical recommendations for its implementation.
| S-EPMC10463506 | biostudies-literature
Project description:INTRODUCTION:We developed an 18-month Happy Teen 2 (HT2) programme comprised of a one-day workshop, two half-day sessions, and three individual sessions to prepare HIV-infected youth for the transition from paediatric to adult HIV care services. We describe the programme and evaluate the change in youth's knowledge scores. METHODS:We implemented the HT2 programme among HIV-infected Thai youth aged 14-22 years who were aware of their HIV status and receiving care at two hospitals in Bangkok (Siriraj Hospital, Queen Sirikit National Institute of Child Health [QSNICH]). Staff interviewed youth using a standardized questionnaire to assess HIV and health-related knowledge at baseline and at 12 and 18 months while they participated in the programme. We examined factors associated with a composite knowledge score ≥95% at month 18 using logistic regression. RESULTS:During March 2014-July 2016, 192 of 245 (78%) eligible youth were interviewed at baseline. Of these, 161 (84%) returned for interviews at 12 and 18 months. Among the 161 youth, the median age was 17 years, 74 (46%) were female, and 99% were receiving antiretroviral treatment. The median composite score was 45% at baseline and increased to 82% at 12 months and 95% at 18 months (P < 0.001). The range of median knowledge scores for antiretroviral management, HIV monitoring, HIV services, and family planning significantly increased from baseline (range 0-75%) to (range 67-100%) at 12 months and to 100% at 18 months (P < 0.001). Almost all youth were able to describe education and career goals at 12 and 18 months compared to 75% at baseline. In multivariable analysis, a composite knowledge score at 18 months >95% was associated with education level >high school (aOR: 2.15, 95%CI, 1.03-4.48) and receipt care at QSNICH (aOR: 2.43, 95%CI, 1.18-4.98). Youth whose mother and father had died were less likely to have score ≥95% (aOR: 0.22, 95%CI, 0.07-0.67) than those with living parents. CONCLUSIONS:Knowledge useful for a successful transition from paediatric to adult HIV care increased among youth participating in the HT2 programme. Youth follow-up will continue to assess the impact of improved knowledge on outcomes following the transition to adult care services.
| S-EPMC5704900 | biostudies-literature
Project description:BackgroundTransitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition.MethodA qualitative study was performed using semi-structured interviews with 20 parents of children with Down syndrome and six healthcare professionals.ResultsWe showed that parents and professionals have concerns during each of the three distinct phases of transition (preparation, transfer and integration). Data disclose specific concerns regarding communication, continuity of care and rebuilding trust. We propose a framework for the transition to adult care.ConclusionsThe transition in medical care for children with Down syndrome should be flexible, patient-centred and coordinated together with patients and parents. Only in ensuring continuity of care will individuals with Down syndrome not get lost in transition.
| S-EPMC9546452 | biostudies-literature
Project description:BackgroundOf the 15-20% of youth in North America affected by a chronic health condition (e.g., type 1 diabetes, cystic fibrosis) and/or mental health or neurodevelopmental disorder (e.g., depression, eating disorder, Attention Deficit-Hyperactivity Disorder), many often require lifelong specialist healthcare services. Ongoing primary care during childhood and into young adulthood is recommended by best practice guidelines. To date, it is largely unknown if, how, and when primary care physicians (PCPs; such as family physicians) collaborate with specialists as AYAs leave pediatric-oriented services. The proposed scoping review will synthesize the available literature on the roles of PCPs for AYAs with chronic conditions leaving pediatric specialty care and identify potential benefits and challenges of maintaining PCP involvement during transition.MethodsArksey and O'Malley's original scoping review framework will be utilized with guidance from Levac and colleagues and the Joanna Briggs Institute. A search of databases including MEDLINE (OVID), EMBASE, PsycINFO, and CINAHL will be conducted following the development of a strategic search strategy. Eligible studies will (i) be published in English from January 2004 onwards, (ii) focus on AYAs (ages 12-25) with a chronic condition(s) who have received specialist services during childhood, and (iii) include relevant findings about the roles of PCPs during transition to adult services. A data extraction tool will be developed and piloted on a subset of studies. Both quantitative and qualitative data will be synthesized.DiscussionKey themes about the roles of PCPs for AYAs involved with specialist services will be identified through this review. Findings will inform the development and evaluation of a primary-care based intervention to improve transition care for AYAs with chronic conditions.
| S-EPMC7856752 | biostudies-literature
Project description:IntroductionThe transition from paediatric to adult diabetes care (TPA) of children/adolescents with type 1 diabetes (T1D) represents a unique challenge and remains a critical phase in the T1D care pathway. This study aims to describe and understand the experience of the transition process from a participant's perspective in young adults who are living in France with T1D and to measure their satisfaction.MethodsAn online questionnaire was presented to people with T1D in France on a global online participant community platform. The questionnaire was developed by a scientific committee including paediatric and adult diabetologists and refined by a group of participants. Thematic qualitative analysis was performed on the responses.ResultsA total of 104 respondents were included in the survey (mean age 24.4 years [95% CI 23.8-25.0]; 61.5% female). The mean age at the time of transition was 18.4 years (95% CI 17.8-18.9), and 56% of respondents had their first adult diabetology follow-up in the same institution. During TPA, of the 76 participants who experienced personal issues, 74% experienced at least one issue with their diabetes management in the months following the transition. In the following months, 61% experienced new or unexpected problems in monitoring their diabetes after transition and 44% reported unusual glycaemic imbalances, including hypoglycaemia (8%) and hyperglycaemia (9%) requiring hospitalisation. Presence of personal issues during TPA was significantly associated with occurrence of problems with diabetes management or glycaemic imbalance. Three factors identified for a successful transition were (i) early meeting with the 'adult' diabetes care team, (ii) letting the participants choose the right age to leave paediatric clinic and (iii) having good diabetes control at the beginning of the TPA process.ConclusionMost young adults with T1D report experiencing issues around TPA with significant consequences on their disease management. Hence, it is necessary to identify these issues to better support them and improve diabetes management during this phase.
| S-EPMC11411039 | biostudies-literature