Psychosocial burden of inflammatory bowel disease in adolescents and young adults.

BACKGROUND: This study examined the psychosocial burden of inflammatory bowel disease (IBD) in young people aged 15-25 years attending a tertiary specialist health centre for adolescents and young adults in Brisbane. AIMS: To describe the impact of IBD on psychosocial well-being in young people and to compare well-being in the IBD cohort to well-being among young people with other chronic conditions, with a view to identifying characteristics and challenges unique to those with IBD. METHODS: Young people with IBD provided demographic information and psychosocial data through a cross-sectional self-report survey. Psychosocial data included the Kessler Psychological Distress Scale, Perceived Stress Scale, Brief Illness Perception Questionnaire, World Health Organisation Well-being Index, Paediatric Quality of Life Inventory, Short Quality of Life Questionnaire for IBD, Multidimensional Scale of Perceived Social Support, Connor Davidson Resilience Scale 2 and the Multidimensional Health Locus of Control Scale. RESULTS: Surveys were collected from 51 young people with IBD and compared with surveys from 210 young people with juvenile rheumatic disease (n = 31), phenylketonuria (n = 21), cystic fibrosis (n = 33), renal transplants (n = 14) and craniomaxillofacial conditions (n = 111). On the psychosocial domains, 41% of young people with IBD had poor well-being and 37% were at risk of depression. When assessed against the comparison group, young people with IBD reported higher depressive symptoms (P = 0.04), worse illness perceptions (P < 0.01) and lower internal locus of control (P < 0.01). CONCLUSIONS: Early recognition and treatment of depression and other psychosocial comorbidities within integrated pathways of care is crucial in adolescents and young adults with IBD and likely to improve the course of IBD and their overall health and well-being. Interventions aimed at enhancing self-efficacy and increasing public awareness are also likely to be helpful.

Diabetes care: addressing psychosocial well-being in young adults with a newly developed assessment tool.

BACKGROUND: Psychosocial assessment should be part of clinic visits for people with diabetes mellitus (DM). AIMS: To assess the usage and acceptance of a diabetes psychosocial assessment tool (DPAT) and to profile the clinical and psychosocial characteristics of young people with diabetes. METHODS: Over a 12-month period, young adults (18-25 years) attending diabetes clinic were offered DPAT. The tool embeds validated screening tools including the Problem Areas in Diabetes 20 (PAID-20) questionnaire, the Patient Health Questionnaire-4 (PHQ-4) and the World Health Organization Well-Being Index-5 (WHO-5). Baseline clinical data were collected and questions regarding social support, body image, eating concerns, hypoglycaemia and finances were included. RESULTS: Over the 12 month, the form was offered to 155 participants (64.6% of eligible attendees). The majority (96.1%) had type 1 DM with a mean duration of 10.5 (±5.3 SD) years. Average glycated haemoglobin (HbA1c) was 8.7% (±1.5 SD) (or 71.2 mmol/mol ±16.5 SD). Severe diabetes-related distress (PAID-20 ≥ 40) was found in 19.4%. Low WHO-5 scores (28-50 points) were seen in 14.8%. PHQ-4 identified 25.8% with anxiety and 16.1% with depression. Significant weight, shape and eating concerns were identified in 27.1, 26.6 and 28.4%, respectively. Serious hypoglycaemia concerns were raised by 4.5%. CONCLUSION: DPAT revealed a high prevalence of psychosocial stress among young adults with DM. The tool was easy to use and accepted by patients and may aid streamlining referrals to relevant members of a multidisciplinary team.

Protocol for psychosocial screening of adolescents and young adults with chronic illness.

BACKGROUND: One in five adolescents and young adults (AYA) has a chronic health condition necessitating on-going engagement with healthcare systems. Despite increasing prevalence there remains limited understanding of the burden of illness they experience. Living with a chronic illness can challenge healthy adolescent development, with the unique health and developmental issues affecting AYA requiring different responses from the healthcare system. AIMS: To examine and compare the burden of illness in this group across a large range of chronic health conditions. METHODS: In a dedicated health service for AYA aged 15-25 years with chronic health conditions, (13-25 years for those with substance use issues) we detail a protocol where demographics, general health, disease-specific indicators and comprehensive psychosocial variables will be collected. The health conditions include chronic gastrointestinal disease, cystic fibrosis, chronic rheumatic disease, phenylketonuria, craniomaxillofacial deformities, renal transplant patients and problematic substance use. Results will be compared to AYA without chronic illness and AYA with diabetes. RESULTS: This protocol outlines a comprehensive screening study for AYA with a large range of chronic health conditions, inclusive of medical, mental health, impairment and quality of life variables. It will inform service planning and provide a foundation upon which allied health service requirements (e.g. psychology) can be based. Whilst currently cross-sectional we anticipate further utility in broadening outcomes to include non-physical illness-related constructs. CONCLUSIONS: The commonalities and differences between conditions will be examined to facilitate efficiencies of scale for systems and supports. Further iterations including quantifying access to allied health services will facilitate studying the impact of such interventions on treatment adherence and improving psychosocial functioning, quality of life and disease outcomes.

Psychosocial screening and management of young people aged 18-25 years with diabetes.

BACKGROUND: Routine psychosocial screening and management of people with diabetes is recommended. AIMS: To profile demographic, medical and psychosocial characteristics of young people with diabetes, and to develop a screening tool and care pathway for routine use. METHODS: Indices of diabetes control and recorded diabetes complications were complimented by psychosocial screening tools assessing psychological, diabetes specific and perceived stress (Kessler 10, Problem Area in Diabetes, Perceived Stress Scale), well-being (World Health Organization Well Being Index-5), disordered eating (Eating Disorder Risk Inventory-3 Risk Composite), compensatory behaviour questionnaire, social support (Multidimensional Scale of Perceived Social Support), resilience (Connor Davidson Resilience Scale - 2 item) and financial concerns. Service provision and demographic data were also collected. Diabetes and mental health clinicians then identified a subset of measures to use for routine screening along with care pathways. RESULTS: Psychosocial screening was well accepted. Participants (151) had suboptimal glycaemic control (glycated haemoglobin 8.0 interquartile range 1.8%/64 interquartile range 22 mmol/mol). Severe diabetes-related distress (Problem Area in Diabetes ≥40) was found in 19.4% and 26.0% reported difficulties managing healthcare costs. A mental health disorder was likely in 9.7%, whilst 23.4% had high Kessler 10 scores. Low World Health Organization Well Being Index-5 scores (≤13) were seen in 29.0%. Risk for an eating disorder (Eating Disorder Risk Inventory-3 Risk Composite) was 12.7%, whereas approximately 36.0% had disturbed eating behaviours. CONCLUSION: Psychosocial screening of young adults with diabetes identified complex needs. A brief psychosocial screening tool and associated care pathways were developed for routine use in a young adult tertiary referral diabetes clinic. The tool assesses constructs, such as diabetes distress, depression, anxiety, well-being, hypoglycaemia-unawareness, fear of hypoglycaemia, social support, weight, shape and eating concerns and financial concerns. This will provide a longitudinal data source for further research to inform clinical practice.

Disturbed eating behaviours and thoughts in Australian adolescents with type 1 diabetes.

AIM: To describe the presence and type of disturbed eating behaviours and thoughts in a combined male/female Australian sample of adolescents with type 1 diabetes, and examine the association of eating behaviours and thoughts with glycaemic control as evidenced by high glycosylated haemoglobin levels (HbA1c). METHODS: In this cross-sectional descriptive study, 124 adolescents aged 13-18 years were invited to complete three self-administered questionnaires. The Youth Eating Disorder Examination Questionnaire (YEDE-Q) and the Eating Disorder Inventory -3 Risk Composite (EDI-3RC) assessed risk for an eating disorder. The third questionnaire, the Strengths and Difficulties Questionnaire (SDQ) assessed emotional and behavioural concerns. Clinical data were collected from the medical records, routine clinic appointments and the adolescent. RESULTS: Any disturbed eating behaviour was reported by approximately one-third of participants (32.3%) and was common in females and males (37.9% vs. 25.9%). Binge eating (17.7%), driven exercise (13.0%) and dietary restraint (8.9%) were the most common disturbed eating behaviours, although restraint was not evident in males. Insulin manipulation/omission (5.6%), vomiting (3.3%), laxative (0.8%) or diuretic use (0.8%) were less common. Regression analysis showed a significant association between HbA1c and more disturbed eating behaviours and thoughts which remained significant when adjusted for confounders. CONCLUSIONS: High rates of disturbed eating behaviours and thoughts were seen in this Australian sample of adolescents with type 1 diabetes. High scores on both eating disorder measures were associated with poorer glycaemic control. These results highlight the need to screen for disordered eating in adolescents with type 1 diabetes.

Concurrent validity of self-report measures of eating disorders in adolescents with type 1 diabetes.

AIM: Eating disorder screening tools have not been adequately validated for use with adolescents with type 1 diabetes. This study compared the Youth Eating Disorder Examination-Questionnaire (YEDE-Q) and the Eating Disorder Inventory-3 Risk Composite (EDI-3RC) against the child Eating Disorder Examination (chEDE). These screening tools were chosen because they broadly assess eating disorder psychopathology and have subscales helpful for clinical management. METHODS: In this cross-sectional study, 124 adolescents with type 1 diabetes aged 13-18 years completed two self-administered questionnaires, the YEDE-Q and the EDI-3RC. Cronbach's alpha was used to assess internal consistency of the tools. Fifty-one adolescents, randomly selected, participated in the chEDE. Intraclass correlations and Spearman's correlations were used to measure concordance of the chEDE with the YEDE-Q and EDI-3RC. RESULTS: The YEDE-Q and EDI-3RC demonstrated good subscale internal consistency; Cronbach's alpha for YEDE-Q (0.78-0.95) and EDI-3RC (0.79-0.94). High levels of concurrent validity with the chEDE were seen with both tools. CONCLUSION: Preliminary evidence is provided for the validation of the YEDE-Q and EDI-3RC for use in adolescents with type 1 diabetes. The YEDE-Q also defines individual disturbed eating behaviours with frequency ratings which can be helpful for tailoring early intervention.