Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey.

INTRODUCTION: Patient satisfaction with health care is a key quality metric, associated with adherence and better outcomes. However, satisfaction with US Hemophilia Treatment Centers (HTC) is unknown. AIM: To assess patient satisfaction with US Hemophilia Treatment Centers. METHODS: A nationally uniform survey was conducted using the US HTC Network's regional infrastructure. Satisfaction with multidisciplinary team members, services and care processes was assessed. The anonymous survey, in English and Spanish, was disseminated to 28 289 households. Data were aggregated using 4 standard US Census regions. RESULTS: 5006 individuals (17.7%) who obtained care from 133 (96.4%) of 138 HTCs in 2014 responded. Satisfaction with overall HTC care at 'always' or 'usually' (A/U) levels ranged 94.2%-97.9% regardless of patient gender, age, race, ethnicity, language, diagnosis, severity, region or frequency of HTC contact. A/U satisfaction with HTC haematologist, nurse, social worker or physical therapist, individually, ranged 95.1%-97.3% nationally. A/U satisfaction with three HTC services was 89.5%-96.9% and 94.9%-98.0% for five HTC care processes nationally. Regional satisfaction at A/U levels was at least 87.0%. Nationally, 26.4% and 21.2% rated insurance and language, respectively, as A/U problems in getting needed HTC services. CONCLUSION: Patient satisfaction with US Hemophilia Treatment Center care, multi-disciplinary teams, services and processes was consistently high, documenting the value patients place on HTCs. The successful survey administration demonstrates the capability of the Network's regional infrastructure. Access to the US HTC Network is particularly critical to ongoing health in this new era of novel and gene therapies.

Transition of adolescents with intellectual disability from schools for learners with special educational needs: Parents views for the preparedness.

BACKGROUND: Studies on preparedness of parents of adolescents living with intellectual disabilities transitioning from school to adulthood are scarce in sub-Saharan Africa. This study explored views of parents on their preparedness to handle adolescents transitioning from special schools to adulthood. METHODS: Descriptive qualitative method was used to collect views of parents of adolescents with intellectual disability on their preparedness to handle transition of their children from school into community life. Content analysis was used to analyse the data. FINDINGS: Twelve female and two male participants expressed concerns on lack of transition plans, adolescent's future, culture and beliefs and inadequate community support. Views of parents of younger children and those of parents of older children were similar. CONCLUSION: Parents were unprepared for transition of their children from school to community life. Multidisciplinary approach including family involvement and community support is necessary to enhance the transition of adolescents with intellectual disability.

Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative.

The adequate preparation of cystic fibrosis (CF) youth for the transfer from pediatric to adult-based health care services is essential to meet the needs of this changing population. This paper describes the evolution of a transition clinic for patients with CF into a multidimensional quality improvement transition initiative. Three transition interventions (a patient transition clinical pathway; collaboration with the adult clinic; and a tool to measure transfer readiness) were sequentially implemented and evaluated. Each was found to be a valuable addition to a comprehensive transition protocol and today are endorsed as part of transition best practices.

Experiences with and Outcomes of Two Interventions to Maximize Engagement of Chronically Ill Adolescents During Hospital Consultations: A Mixed Methods Study.

Improving patient-provider communication during hospital consultations is advocated to enhance self-management planning and transition readiness of adolescents with chronic conditions. This longitudinal mixed methods study evaluates the implementation and the outcomes of independent split-visit consultations and individual transition plans by 22 hospital teams participating in the Dutch Action Program 'On Your Own Feet Ahead!'. The interventions raised awareness in adolescents and professionals, improved adolescents' display of independent behaviors and led to more discussions about non-medical issues. Successful implementation required a team-based approach and clear explanation to parents and adolescents. Pediatric nurses played a pivotal role in improving transitional care.

Transition readiness of adolescents to adult health care.

Background: Transition in health care is a process wherein adolescents gradually prepare for and shift towards care in the adult system. An initial assessment of the readiness of these adolescents is fundamental in providing appropriate health services for them. This paper aims to determine the readiness of adolescent patients towards transitioning to adult care. Methods: This is a prospective cross-sectional study utilizing an interviewer-guided modified Transition Readiness Assessment Questionnaire (TRAQ). Sixty-three adolescents ages 15 to 18 years seen in the Pediatric Outpatient Department (OPD) of a tertiary hospital in Baguio City from July 1 to October 31, 2020 were enrolled. Frequency and percentages were used to describe the demographic data; while mean score and standard deviation determined readiness based on a Likert scale. One-way ANOVA was utilized to determine association between factors and readiness to transition. Results: For all domains of TRAQ, the mean score was 3.64, implying that they are not yet ready to transition. 49.2% belong to General Pediatrics. 44.4% belong to the Igorot ethnic groups. Most are still in High school, and majority of their parents finished High School level. Furthermore, the P-values were more than 0.05 for all variables suggesting no association between readiness to transition and the identified factors in this study. Discussion: This study showed that adolescents who had both acute and chronic illnesses, were not yet ready to transition. Provision of a platform for assisting the adolescents in their assumption of bigger roles/responsibilities for their own health care is necessary to ensure proper transitioning to adult health care.

Cystic fibrosis adolescent transition care in Canada: A snapshot of current practice.

Cystic fibrosis (CF) adolescent transition is not a new health care issue, yet progress in many areas associated with the transition process has been slow. In Canada, the status of CF transition has not been previously reported. The aim of the present study was to describe the transition from paediatric to adult health care for CF patients in Canada, specifically: availability of adult CF clinic services; average age of transfer from paediatric to adult CF health care; and existing CF transition practices. Results show that access to appropriate adult CF health care in Canada is universal; however, the availability, quantity and quality of CF transition care vary among CF clinics. Over a four-year period, the number of CF clinics using formal transition protocols almost doubled, but more work remains to be performed.

La transition des adolescents ayant la fibrose kystique (FK) n'est pas un nouveau problème de santé, mais dans de nombreux secteurs, les progrès associés au processus de transition sont lents. Au Canada, on n'a jamais fait de rapport sur la situation de la transition en FK. La présente étude visait à décrire la transition des patients du Canada ayant la FK entre les soins pédiatriques et les soins pour adultes, notamment la disponibilité des services dans les cliniques de FK pour adultes, l'âge moyen du transfert des soins pédiatriques aux soins pour adultes et les pratiques de transition actuelles en FK. Les résultats démontrent qu'au Canada, on jouit d'un accès universel aux soins pour adultes en FK, mais que la disponibilité, la quantité et la qualité des soins de transition varient selon les cliniques. Sur une période de quatre ans, le nombre de cliniques de FK faisant appel à des protocoles de transition officiels a presque doublé, mais il reste beaucoup à faire.

Does Parenting Style Affect Adolescent IBD Transition Readiness and Self-Efficacy Scores?

BACKGROUND: Transition to adult-centered care requires adolescents with inflammatory bowel disease (IBD) to acquire a set of independent self-management skills. Transition success can be affected by maturity, cognitive development, and many other factors. Our hypothesis was that parenting style would be associated with increased self-efficacy and therefore transitions readiness. METHODS: A prospective cohort survey study of adolescents with IBD and their parents from October 2018 to October 2019 was performed. Participants completed the IBD-Self-Efficacy Scale- Adolescent questionnaire (IBD-SES-A) and the Transition Readiness Assessment Questionnaire (TRAQ). Parents completed the Parent Styles and Dimensions Questionnaire (PSDQ-short form). Demographic and disease information were also collected. RESULTS: Sixty-nine participants were included for full analysis (36 males and 33 females); mean age was 18.2 years, and average age of IBD diagnosis 13 years. Overall, 83% of participants were non-Hispanic Caucasian, and 84% reported parental annual income over USD 100,000. All 69 parents reported an authoritative parenting style. Females have significantly higher TRAQ scores than males (p = 0.0004). TRAQ scores differed significantly between age groups, with 20 to 22 years old having higher scores (p ≤ 0.0001). TRAQ and IBD-SES-A scores did not differ by parental education or parenting style. CONCLUSION: Given the inability to delineate different parenting, this study was unable to demonstrate a protective parenting style associated with better transitions readiness and self-efficacy scores in adolescents with IBD. Within the context of authoritative parenting, we did find that females and older adolescents had higher transition readiness scores. Additional research into psychosocial determinants of transition readiness, and the importance of multidisciplinary management with an integrated team including psychologist and social workers, can help improve IBD transition outcomes.

Current practices and experience of transition of young people on long term home parenteral nutrition (PN) to adult services - A perspective from specialist centres.

BACKGROUND: There has been an estimated fivefold increase in the number of children receiving parenteral nutrition (PN) at home in the past 10 years with some children approaching the age when they should be referred to adult services whilst still on treatment. Models of care for moving young people onto adult providers of PN at home are not yet well developed, and transition is a potentially dangerous time for young people with complex health needs. METHODS: A questionnaire to ascertain current experience and practices of transition in the context of home PN services was dispatched to 170 consultant gastroenterologists who were members of the British Association of Parenteral and Enteral Nutrition (BAPEN) and also to all 40 members of the Nutrition and IF working group of the British Society of Paediatric Gastroenterology and Nutrition (BSPGHAN). Anonymised returns were received from 12 adult and 18 paediatric centres. RESULTS: We estimate about 50% paediatric IF centres, and the three largest adult IF centres responded to the survey. We identified 14 young adults already transitioned and 43 currently in transition. The practices and processes of transition reported were highly variable. Time taken to achieve transition ranged from under 6 months up to 2 years. The most frequent concerns to be identified were confusion around care routines and psychological problems at the time of transition (in one third of respondents). CONCLUSIONS: We conclude that a transition pathway and service standards for adolescents on home PN should be developed, consideration should be given to checklists for practical aspects (e.g. pumps), key worker and psychology input to enhance emotional resilience of the young people and carers.

Transitions to Adult Care for Rhode Island Youth with Special Healthcare Needs.

The transitioning of youth from pediatric to adult care systems is often fraught with discontinuity, miscommunication and gaps in care. This is most significant for youth with special health care needs. A panel discussion on transitioning youth to adult care systems that was part of a learning collaborative held by The RI Care Transformation Collaborative (CTC) is presented here, illustrated by a pertinent case of a youth with type 1 diabetes. [Full article available at http://rimed.org/rimedicaljournal-2016-08.asp, free with no login].

Zebrafish pituitary gene expression before and after sexual maturation.

Sexual maturation and somatic growth cessation are associated with adolescent development, which is precisely controlled by interconnected neuroendocrine regulatory pathways in the endogenous endocrine system. The pituitary gland is one of the key regulators of the endocrine system. By analyzing the RNA sequencing (RNA-seq) transcriptome before and after sexual maturation, in this study, we characterized the global gene expression patterns in zebrafish pituitaries at 45 and 90 days post-fertilization (dpf). A total of 15 043 annotated genes were expressed in the pituitary tissue, 3072 of which were differentially expressed with a greater than or equal to twofold change between pituitaries at 45 and 90 dpf. In the pituitary transcriptome, the most abundant transcript was gh. The expression levels of gh remained high even after sexual maturation at 90 dpf. Among the eight major pituitary hormone genes, lhb was the only gene that exhibited a significant change in its expression levels between 45 and 90 dpf. Significant changes in the pituitary transcripts included genes involved in the regulation of immune responses, bone metabolism, and hormone secretion processes during the juvenile-sexual maturity transition. Real-time quantitative PCR analysis was carried out to verify the RNA-seq transcriptome results and demonstrated that the expression patterns of the eight major pituitary hormone genes did not exhibit a significant gender difference at 90 dpf. For the first time, we report the quantitative global gene expression patterns at the juvenile and sexual maturity stages. These expression patterns may account for the dynamic neuroendocrine regulation observed in body metabolism.