What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida

Problem Transition from paediatric to adult care of young adults with chronic diseases is poorly coordinated, often delayed, and usually managed through a single referral letter. About 35% of young adults lose a successfully functioning kidney transplant within 36 months of transfer from paediatric to adult services.

Design Before and after study of the impact of a new integrated paediatric-adult clinical service for patients with kidney failure.

Setting Adult renal centre in Oxford and two paediatric renal centres in London. 

Strategies for change An integrated paediatric-young adult joint transition clinic and care pathway was established in 2006, in conjunction with a young adult clinical service with regular community based clinics. Previously, young adult transplant recipients were transferred by a single referral letter to an adult renal consultant and managed in a conventional adult clinic.

Key measures for improvement Rates of acute rejection and loss of kidney transplants five years before and five years after the introduction of the integrated young adult care pathway. 

Effects of the change Nine young adult kidney transplant recipients were transferred directly to adult care between 2000 and 2006 (group 1). From 2006 to 2010, 12 young adult transplant recipients underwent integrated transition into the new young adult service (group 2). Six transplants were lost in group 1 (67%) compared with no transplant losses in group 2. 

Lessons learnt Implementing an integrated transition clinic, coupled with improving young adults’ healthcare experience through a young adult clinic, improved patient adherence to regular medication and engagement with healthcare providers, as judged by reduced transplant failure rates. This model may be applicable to other young adult populations with chronic disease transferring to adult healthcare.

https://www.bmj.com/content/bmj/344/bmj.e3718.full.pdf

Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure

Objectives. To gain insight into the transitional needs of adolescents with juvenile idiopathic arthritis (JIA) and to examine how these needs may be addressed within a structured programme of transitional care. Methods. A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 12-18 yr, (ii) young adults with JIA aged 19-30 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA. Results. Transitional needs included aspects of participants' physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient's holistic needs and increased transfer preparation. Conclusions. These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.

/pdf/user-perspectives-of-transitional-care-for-adolescents-with-50d7ryahek.pdf

User perspectives of transitional care for adolescents with juvenile idiopathic arthritis

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.Method. In the CP Transition study, adolescents and young adults aged 16 – 20 years, diagnosed with CP without severe learning disabilities (n = 103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed.Results. About 20 – 30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and ...

Determinants of functioning of adolescents and young adults with cerebral palsy

Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(02)11316-X.pdf

Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study.

Objectives: To evaluate in a pilot study the usefulness of measures of health and psychosocial status for use with young people with physical and complex disability. Also to test empirically a conceptual model of the factors determining key outcomes in young disabled adults, in particular, participation (handicap).Design: A cross-sectional study involving face-to-face interviews with young adults aged 16–28 years (n = 45) with physical and complex disabilities. A group of nondisabled college students completed the same set of questions to provide normative scores for some psychosocial measures.Setting: Young people with physical disabilities were recruited from the area of North and North East Lincolnshire, and nondisabled young people from the Leeds area.Methods: Standardized measures of impairment, disability and handicap, together with various psychosocial scales were incorporated into a structured face-to-face interview. Standardized measures included the Nottingham Health Profile (NHP), the Barthel I...

Factors determining participation in young adults with a physical disability: a pilot study

Thalidomide was first synthesized in 1953 and was subsequently marketed as a mild hypnotic and sedative in more than 20 countries. By 2001 it was estimated that there were 5,000 survivors from the 10,000 - 12,000 babies who were, as a result, born with severe abnormalities. For these survivors, recent concerns have emerged about their physical state, in particular their levels of pain and their ability to maintain independence. It was therefore wished to ascertain health status and current concerns amongst a sample of survivors living in the UK. A combination of qualitative and quantitative methodologies was employed. Qualitative interviews were undertaken with a sample drawn from the population affected by thalidomide known to the Thalidomide Trust. Selection of participants was based upon a theoretical sample frame. Postal questionnaires to examine health status and various psychosocial aspects concerned with living with the consequences of thalidomide were sent subsequently to these same participants and to a random sample of those not originally drawn for the qualitative interviews. For the qualitative interviews, 28 agreed to take part; two refused and the remainder did not respond. Those agreeing to interview were representative of the original compensation bands (Chi-Square = 3.929; p = 0.416). Several themes emerged from these interviews, including the effects on work and career; coping in terms of attitude to life, self-image, confidence, self-esteem, stress and emotion; relationships, independent living issues and emergent problems such as pain, quality of life, and anxiety about the future. A postal questionnaire was then sent to those who had agreed to interview (28), plus a random sample of the remaining group who were not initially chosen for the qualitative interviews. In total 82 people were sent the questionnaire, of whom 41 (50%) responded. Two-thirds of responders were female. Seven out of ten lived with a partner, and over half (56%) had children. Almost half (46%) were in work, but 32% reported they were permanently unable to work because of disability. Current levels of impairment were found to be similar across groups defined by the original compensation band. In contrast, the activity limitation measures showed a steep gradient across bands but only 37% considered themselves disabled. Nevertheless, despite the restriction in activities for some, levels of participation were similar across bands; likewise simple summary items on health status and quality of life were similar and 70% reported their quality of life (QoL) was good or better than good. Yet nine in ten believed that their body was less flexible than in the past. Almost as many reported they were less able to carry things. It turns out that when compensation bands were grouped (1 - 3, 4 - 5) to highlight those most severely affected according to the original assessment, then those in the higher band grouping reported significantly more musculoskeletal problems, high levels of fatigue and increasing dependency and feelings of vulnerability. It is clear that the original ranking of disability severity, as expressed through the compensation, bands (allocated in early childhood in most cases), is consistent with current ranking of limitations in activity and participation. Nevertheless, despite high levels of disability amongst some survivors, lifelong adjustments to the original impairments have resulted in more than two thirds reporting at least a good quality of life. However, survivors expressed increasing concern about emerging musculoskeletal and other problems which may compromise hard-won independence.

http://poi.sagepub.com/content/31/2/147.full.pdf+html

N Bent

Papers

Team approach versus ad hoc health services for young people with physical disabilities: a retrospective cohort study.

Factors determining participation in young adults with a physical disability: a pilot study

Living with thalidomide: Health status and quality of life at 40 years