Youth consultation-liaison psychiatry: How can we improve outcomes for young people with chronic illness?

The paradigm shift towards youth mental health (McGorry, 2007) presents an opportunity for consultation-liaison psychiatry to re-examine programs for young people with chronic illness. Psychiatric problems contribute to poorer outcomes for around a third of young people with chronic medical conditions such as type 1 diabetes (Diabetes Australia, 2010). During later adolescence, mental health difficulties are linked with higher dropout rates from specialist medical clinics with consequent deterioration in health outcomes for survivors of complex paediatric conditions (e.g. 30–40% of older adolescents with type 1 diabetes exit from specialist care, increasing complication rates and preventable hospitalisations (Diabetes Australia, 2010)). How can consultation-liaison psychiatry adapt the new youth model in psychiatry to help young people with chronic illness?

This is an important question. Youth is the formative stage for health behaviour. Over the developmental period from 12 to 25 years, young people with complex medical conditions will move from younger adolescence, when parents are responsible for their medical care, into early adulthood as they gain full independence. In the youth model, chronic disease self-management is viewed as a unique individual journey in which young people gain self-efficacy within a distinct developmental and systemic context (Modi et al., 2012). Self-directed care is assumed gradually as the young person matures, and support is available across the crucial older adolescent stage when health outcomes can deteriorate. More generally, during this stage of life, young people establish lifestyle behaviours including diet, exercise, sexual behaviour, and drug and alcohol use.

Earlier models of specialist care relied on older adolescents adapting to the style of adult medical clinics rather than changing services to better meet the needs of young people (Allen and Gregory, 2009; The Royal College of Physicians of Edinburgh Transition Steering Group, 2008). Adult medicine required adolescent patients to have considerable knowledge of their illness and the ability to implement complicated care plans. In the real world of busy paediatric clinics, there were limited opportunities to prepare adolescents for these responsibilities before their transfer to the adult system. Generally, the educational input was not sufficient to make a significant difference to chronic disease self- management (Lotstein et al., 2005). If they were unprepared, young people floundered within the adult health system. In turn, traditional medical services found it hard to engage, support and retain older adolescents, leading to high dropout rates.

These discontinuities in specialist medical care meant that health outcomes could deteriorate in later adolescence for diabetes (Nakhla et al., 2009), cystic fibrosis (Tuchman et al., 2010), paediatric cancers (Oeffinger et al., 2004), renal transplantation (Watson, 2000), congenital heart disease (Yeung et al., 2008) and mental health (Singh et al., 2010). To address these problems, age-banded youth medical clinics are being developed to create environments where young people feel more comfortable and attend more regularly. These youth medical clinics have the same fundamental intent as the youth-specific EPPIC (Early Psychosis Prevention and Intervention Centre) and headspace models in psychiatry: to provide speciality treatment in youth-friendly ways (e.g. Holmes-Walker et al., 2007).

The transitional issues for psychiatry are similar to medicine with a loss of service continuity in the later adolescent age range. The TRACK Study found that mental health transitions were generally ‘poorly planned, poorly executed and poorly experienced’ by older adolescents moving on to adult services (Singh et al., 2010: 173). Service discontinuities were more pronounced for non-psychotic conditions where child-focused and adult services had substantially different orientations. These discontinuities resulted in higher levels of distress for young people around the endpoint of their child and adolescent psychiatric care.

Famously, McGorry (2007) argued for strengthening the public mental health system at its ‘weakest link’ – the child–adult service divide which cuts across the age range for peak prevalence in non-psychotic disorders and the age range for increasing risk of early psychosis. McGorry (2007) proposed the development of integrated youth mental health services such as Orygen Youth Health for young people aged 12–25 years. An international movement in youth psychiatry and the Australian Commonwealth Government agreed with this argument. This led to the national rollout of the EPPIC and headspace programs in Australia. Debate continues about the cost and effectiveness of these youth models of care (Amos, 2012; Mihalopoulos et al., 2012; Yap et al., 2012).

Consultation-liaison psychiatry en- counters the discontinuities and cultural divides of both the specialist medical and psychiatric systems of care for adolescents (Kennedy, 2010). Young people with chronic illness can have the worst of both worlds if they require integrated care for co-morbid medical and psychiatric conditions (e.g. depression and diabetes). The youth model provides a potential answer with the development of youth-focused psychiatric services that bridge the divide between traditional child and adult care. The development of youth consultation-liaison psychiatry should be linked closely with the movement towards youth medical clinics (Trigwell and Jawad, 2010) and we argue for a speedier rollout of youth consultation-liaison psychiatry within local health networks.

Can youth medical clinics improve health outcomes?

A recent systematic review located a number of quantitative studies in transitional medicine that showed statistically significant improvement in health outcomes with youth medical clinics (Crowley at al., 2011). The studies measured biochemical markers such as HbA1c, and complications such as diabetic ketoacidosis and diabetic retinopathy. Service outcomes included missed appointments, loss to follow-up and preventable hospitalisations. Most (five of six) of the successful programs involved youth medical clinics. These were formed either as ‘reach down’ adult clinics or joint paediatric/adult clinics. Specific youth clinics within adult services had more likelihood of success (they worked in three out of four studies), with joint clinics between paediatric and adult physicians being successful in three out of eight studies, including the largest (n = 1507).

All six successful intervention studies involved transitional programs for diabetes, one of the more frequent chronic paediatric conditions, which has readily quantifiable outcome measures. An Australian example was the youth diabetes clinic at the Westmead Hospital in western Sydney (Holmes-Walker et al., 2007). This age-banded clinic was designed to be youth friendly and assertive so that it could attract and hold young people during later adolescence and early adulthood when maintaining diabetic control is challenging, and young people are more likely to disengage from specialist care. The establishment of youth clinics had resource implications but preventing hospitalisations can offset the extra costs (Holmes-Walker et al., 2007). Youth clinics are becoming an accepted part of the landscape of diabetes management, usually as ‘reach down’ clinics within adult endocrinology services (Trigwell and Jawad, 2010). What are the psychiatric needs of young people attending these new youth medical clinics and how well are these needs being met?

Adolescents living with chronic illness

A Channel 4 Cutting Edge documentary about the life of Alex Stobbs gives emotional insight into the challenges that young people face while living with chronic illness (The Alex Stobbs Matthew Passion Project, 2012). Alex was a talented young musician who sang with King’s College Choir. He dreamt of conducting a performance of the St Matthew Passion while a student at Cambridge University. Alex also had cystic fibrosis. The documentary followed him as he prepared to conduct the Passion. It portrays both his musical talent and his daily struggle to live a normal life. At the beginning of the documentary, Alex was living in Cambridge and taking responsibility for his diet and medication. He had a close and highly supportive family. His mother helped him organise his medication and brought home-cooked meals twice a week. This entailed a round trip of 150 kilometres from the family home in Kent. Over the course of the documentary, Alex’s medical team is shown managing the health crises that emerged as he struggled to control his illness. This proved to be a daunting task as his health was precarious with deteriorating lung function and frequent hospitalisations. Everyone was on tenterhooks throughout, concerned about his health and whether he would be well enough to conduct a major musical event.

For young people, the challenge of living with chronic illness is superimposed on the major developmental tasks of adolescence. Life becomes a dynamic balance between the illness, psychiatric adjustment, quality of life, health behaviour and adolescent development, with potential impacts on complication rates and mortality in the long term. If self-directed care begins too precipitously, it increases the chances of failure, resulting in learned helplessness, reduced self-esteem and higher levels of distress. This is associated with the ‘burnout’ that young people can experience through the daily rigours of treatment regimens for chronic illness such as cystic fibrosis. The problems are accentuated with the exit from paediatric care around age 18, which occurs at the tumultuous time when young people are finishing secondary school; forming romantic relationships; furthering their education or entering the workforce; and eventually moving out of the parental home or foster care system. During this developmental stage, young people with chronic illness report poorer emotional adjustment and higher levels of anxiety and depression (Taylor et al., 2009).

Youth consultation-liaison psychiatry

Despite general acknowledgement of the complex biopsychosocial dynamics of chronic illness, psychiatric consultation may not be readily available for co-morbid medical-psychiatric conditions and many young people do not receive the support they need. A regional survey of youth diabetes clinics in the UK showed that young people were generally not offered essential services such as screening for anxiety and depression when they had persistently poor glycaemic control; structured interventions to address family conflict; and mentoring to improve self-esteem and glycaemic control (Trigwell and Jawad, 2010). The authors concluded that the National Health Service should commission specialist consultation-liaison services to ensure that youth clinics could meet national treatment guidelines for the mental health care of diabetes. In the Australian context, we are developing demonstration models of consultation-liaison for young people attending regional speciality clinics. The programs are the result of local partnerships between consultation-liaison psychiatry, paediatrics and adult medicine. All these disciplines have key roles in building effective chronic disease self-management programs that can bridge the divides in the specialist health system.

Chronic disease self-management provides the inclusive framework to address both the physical and emotional domains of chronic illness (Battersby et al., 2010). Versatile interventions have been developed that can tackle the emotional consequences of chronic illness and adjustment to the limitations in daily life (Kennedy and Sawyer, 2008; Modi et al., 2012). Goal setting, maintaining social connections and establishing meaningful activities are key components that can help young people living with life-threatening illness. This is well illustrated in the Channel 4 documentary that followed Alex during his musical studies at Cambridge. He struggled with maintaining his emotional equilibrium while assuming responsibility for self-directed care. Health reverses and moments of despondency are shown in reality documentary style. For Alex, a passion for music helped him to pour his energies into creative pursuits and overcame periods of despair and depression. Musical goals and activities gave enjoyment, achievement and social significance. These are critical ingredients for helping young people maintain a higher degree of emotional stability (Wallis et al., 2012) and the documentary illustrates these vital aspects of self-management.

Consultation-liaison teams can bring the principles of youth mental health to psychiatric practice in medical clinics for young people. Programs are adapted to youth culture, including the informality and flexible styles of communication. Community follow-up is needed for young people who are struggling with emotional independence while navigating changes in the social network of family, friends, education and the workplace (Bastiampillai et al., 2012). This is easier to deliver in youth-friendly environments such as regional headspaces. In practical terms, follow-up programs need to recruit and retain headspace providers who have skills in working with the psychiatric co- morbidities of complex medical conditions. These integrated programs can utilise information technology, including short text messaging (Furber et al., 2011) and innovative applications for chronic disease self-management (e.g. Cafazzo et al., 2012). Interventions can be illness specific and hypothesis driven with evaluation under research conditions.

Conclusion

Through an intriguing parallel process, medicine and psychiatry have each established youth models of care. Despite the similarities, there is limited interchange between these models and the emergence of youth medical clinics is rarely cited in the current debates around youth psychiatry. The evolution of both systems of care was developmentally informed and designed to better adapt health services to the needs of young people (rather than the reverse). Both systems founded youth-friendly services that could improve access, continuity of care and heath outcomes. Youth consultation-liaison psychiatry is located at the overlap between these two different youth models of care. To build capacity and have the best chance of success, youth consultation-liaison psychiatry needs to link youth medical clinics with the emerging infrastructure for youth psychiatry, especially regional headspaces. Youth consultation-liaison psychiatry’s contribution to the design, implementation and evaluation of these clinical pathways should be included within the regional planning for youth mental health.