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

Summary

Background

Young people with physical disabilities often have difficulty attaining independence in adult life and consequently need lifelong support from parents and from health-care and social-care services. There are concerns about the organisation and cost-effectiveness of such services and their ability to meet the independence training and serious health needs of these young people. Our aim was to compare a young adult team (YAT) approach with the ad hoc service approach in four locations in England, in terms of their ability to enhance the participation in society of these young people and their cost.

Methods

We did a retrospective cohort study, in which we interviewed 254 physically disabled young people. 124 healthy controls were given a questionnaire. We interviewed with standardised measures and used logistic regression analysis to test for effects of ad hoc and YAT services. The Mantel-Haenszel χ² statistic was used to test for differences in resource use between areas in which the YAT and ad hoc services were available.

Findings

The absence of pain, fatigue, and stress increased the odds of participation two-fold to four-fold. After adjustment for these factors, young people cared for by multidisciplinary YAT teams were 2·54 times (95% Cl 1·30–4·98) more likely than those who used ad hoc services to participate in society. Resource use did not differ between the two service types.

Interpretation

A YAT approach costs no more to implement than an ad hoc approach, and is more likely to enhance participation in society of young people with physical disabilities.

Introduction

Late adolescence and early adulthood are characterised by two important transitions: from family life to independent living, and from education to employment.1 Generally this period is one of change and of growing independence, but for the disabled teenager it has been described as “hurtling into a void”.² Young people with chronic illness or physical disabilities are often vulnerable in terms of their emotional and behavioural development³ and, consequently, their experience of the transition years is different from that of their peers.⁴ Adolescents are mainly concerned with consolidating identity, achieving independence from parents, establishing adult relationships, and finding a vocation,⁵ but chronic disease inevitably has implications for a child's development. For instance, there might be physical limitations, academic and social difficulties from interruptions in schooling, and cognitive problems. Furthermore, that the child has spent much of their time in the company of adults, rather than peers, can have a detrimental effect.⁶ The strain of having to deal with a disability together with the normal changes associated with adolescence, can result in psychological crises.⁷

Compared with their non-disabled peers, a large proportion of young people with physical disabilities have great difficulty in attaining a similar degree of independence in adult life.⁸ These young people need a lot of support both from their parents and from health-care and social-care services. In this situation, health professionals have unique opportunities to promote the social and occupational integration of disabled and chronically ill youths, helping them maximise their participation in society.¹ However, medical care often breaks down at this point for several reasons—eg, the young person might move away from home, parents might stop taking responsibility for hospital check-ups, and adult clinics usually have a less family-centred approach than do paediatric services.⁹ Furthermore, young people and their parents often feel a sense of loss when they have to leave the care of the paediatricians and nurses whom they have known for many years.¹⁰ These professionals can also be reluctant to relinquish responsibility for the young people, whom they have cared for through many stages of their lives, and whose complex needs they know in detail.⁹ This reluctance can be in the interest of the young person, if the paediatrician has little confidence in the skills of the accepting doctor,¹⁰ or to the detriment of the individual, if transfer is resisted because of emotional attachment.⁹ Poor hand-over to adult services can also take place if young people have no statement of special educational need or are attending a further education college.¹¹ Collectively, these barriers to transition to adult services need to be removed, since the way in which a young person is transferred determines, to a large extent, their use of health-care services during adult life.¹²

Organisations that offer services to young people with disabilities or chronic illness have to ensure that there is ample opportunity for the individual to take part in processes of personal growth.¹³ Proper help in transition from childhood to adulthood enables a young person to become a citizen who contributes to society, whereas an adolescent who is forced into a passive role might have to endure five or more decades of dependency. The resultant burden affects the individual, those who care for the young person, and society as a whole.¹⁴

Health services are often provided in an ad hoc manner by many different organisations, each with their own criteria for defining who receives support. As a consequence, overall care is often fragmented and does not address the psychosocial issues of disability as well as the physical aspects.4, 7 Such arrangements do not meet the important health needs of young disabled people,¹⁵ and it has been suggested that specialist teams to attend to the needs of handicapped adults should be set up in all district health authorities to provide a coordinated service.¹⁶ A report by the UK National Audit Office,¹⁷ looking at health services for physically disabled people aged 16–65 years, echoes these opinions, concluding that services are urgently required. Results of research¹⁸ also suggest that to facilitate transition, reliable, accessible, and high quality services that address all aspects of adult life are important.

In response to these complex needs a few multidisciplinary teams have been developed, the first of which was led by Robinson,¹⁴ who did much to help young adults with spina bifida. Two other teams, in Stoke on Trent and Leeds, UK, have been assessed by grants from the Nuffield Trust, and high user satisfaction was reported.¹⁹ Team-based approaches (usually called young adult team [YAT] services), few of which exist in the UK, involve multidisciplinary specialist teams developed specifically to facilitate transition from childhood to adulthood services, which typically include a consultant in rehabilitation medicine, a psychologist, therapists, and a social worker. These same professionals are likely to be available in most health services, but the pattern of service delivery here is characterised by individual professionals, usually working in isolation, with links between them being of an ad hoc nature.

The outcomes of YAT services have not been compared with those of existing, uncoordinated services. We postulated that team-based approaches would increase the degree of participation of young people with physical disabilities in society more than would ad hoc services. Our aim was to assess this hypothesis, and to ascertain the cost-effectiveness of the two approaches.