A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness

Stinson, Jennifer; Kohut, Sara Ahola; Spiegel, Lynn; White, Meghan; Gill, Natasha; Colbourne, Gina; Sigurdson, Samantha; Duffy, Karen Watanabe; Tucker, Lori B.; Stringer, Elizabeth; Hazel, Beth; Hochman, Jacqueline; Reiss, John; Kaufman, Miriam

doi:10.1515/ijamh-2013-0512

Cited by 97 publications

(85 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…About 64% of respondents felt they had been ready to transfer, a lower percentage than reported before [19,40]. Preparing adolescents for future independent roles and assessing transition readiness deserve more attention [16,34,35]. For example, only 23.5% had met their adult providers in advance.…”

Section: Discussionmentioning

confidence: 97%

“…Concerns about transition mainly originate from PC, and few studies have included adult providers [32,33]. As a consequence, today's debate focuses on better preparation of adolescents, including (measuring) transition readiness [16,34,35], whereas making adult services more responsive to YA's needs receives less attention [36]. Transitional care should not be confined to a pediatric paradigm and be disconnected from the principles and practice of adolescent medicine [37].…”

Section: Discussionmentioning

confidence: 99%

“…There are very few reliable and valid measures that assess these outcomes [15]. A recent review of transfer satisfaction measures identified only seven studies [16]. Although some studies reported negative experiences [17] and significant worries [18], in another study, participants had no concerns and were satisfied [19].…”

Section: Implications and Contributionmentioning

confidence: 99%

“…Measures were usually developed ad hoc without following the established guidelines for patient reported outcomes [20]. Also, different concepts were measured at the same time (e.g., concern, attitudes, satisfaction), and all measures had poor quality according to the COSMIN checklist criteria [16,20]. COSMIN stands for COnsensus-based Standards for the selection of health Measurement Instruments.…”

Section: Implications and Contributionmentioning

confidence: 99%

See 3 more Smart Citations

Young Adults' Experiences and Satisfaction With the Transfer of Care

Staa

Sattoe

2014

Journal of Adolescent Health

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 97%

Section: Discussionmentioning

confidence: 99%

Section: Implications and Contributionmentioning

confidence: 99%

Section: Implications and Contributionmentioning

confidence: 99%

See 2 more Smart Citations

Young Adults' Experiences and Satisfaction With the Transfer of Care

Staa

Sattoe

2014

Journal of Adolescent Health

View full text Add to dashboard Cite

show abstract

“…A systematic review of peer-support interventions in adolescents with chronic illness indicated improvement in adolescents' behavioral and emotional symptoms (543). We recommend that information regarding access to patient support organizations be made available to each individual with TS on a regular basis.…”

Section: Role Of Patient Support Organizationsmentioning

confidence: 99%

Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting

Gravholt¹,

Andersen

Conway

et al. 2017

European Journal of Endocrinology

908

1,259

View full text Add to dashboard Cite

Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society of Endocrinology and the Pediatric Endocrine Society, in collaboration with the European Society for Paediatric Endocrinology, the Endocrine Society, the European Society of Human Reproduction and Embryology, the American Heart Association, the Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society of Endocrinology, the Pediatric Endocrine Society, the European Society for Paediatric Endocrinology, the European Society of Human Reproduction and Embryology and Summary of recommendationsThe recommendations (R) are worded as recommend (strong recommendation) and suggest (weak recommendation). We formally graded only the evidence underlying recommendations for therapeutic choices. The quality of evidence behind the recommendations is classified as very low (⨁◯◯◯), low (⨁⨁◯◯), moderate (⨁⨁⨁◯) and strong (⨁⨁⨁⨁). See further section 'Summary of methods used for guideline development'. Diagnosis and geneticsR 1.1. We recommend considering a diagnosis of TS in phenotypic females with a karyotype containing one X chromosome and complete or partial absence of the second sex chromosome, associated with one or more typical clinical manifestations of TS (⨁⨁⨁⨁). R 1.2. We recommend against considering a diagnosis of TS in females with one X chromosome and a deletion distal to Xq24 on the other X chromosome, and in women over the age of 50 years with less than 5% 45,X mosaicism (⨁⨁◯◯). R 1.3. We suggest that the new general surveillance management guideline applies to TS patients with any karyotype (⨁⨁◯◯). R 1.4. We recommend to consider testing for Turner syndrome (TS) in a female with typical signs (Table 2) (⨁⨁⨁⨁). R 1.5. We ...

show abstract

Transitioning Wisely: Improving the Connection From Pediatric to Adult Health Care

White

Ardoin

2016

Arthritis & Rheumatology

View full text Add to dashboard Cite

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness

Cited by 97 publications

References 29 publications

Young Adults' Experiences and Satisfaction With the Transfer of Care

Young Adults' Experiences and Satisfaction With the Transfer of Care

Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting

Transitioning Wisely: Improving the Connection From Pediatric to Adult Health Care

Contact Info

Product

Resources

About