Self-management skills in a UK sample of young people with chronic liver disease.

BACKGROUND: We aimed to assess self-management skills and adherence behaviors in young people post-liver transplant and compare these with those of young people with autoimmune liver disease and other forms of chronic liver disease. METHOD: As part of our specialist multidisciplinary clinic, n = 156 young people (aged 16-25 years) completed the Liver Self-Management Questionnaire (an adaptation of the Developmentally Based Skills Checklist for adolescents post-liver transplant and modified for us across liver disease type and within the United Kingdom). Those taking medication (n = 128) also completed a service-designed questionnaire regarding adherence. The statistical significance of group differences was assessed with non-parametric analyses. RESULTS: Young people post-liver transplant were less likely to report managing their condition independently than those with autoimmune liver disease or those with other forms of chronic liver disease. They also reported higher adherence (93%) compared to those with autoimmune liver disease (77%) and those with other forms of chronic liver disease (85%). However, the vast majority of self-management and adherence behaviors were comparable between young people post-transplant and those with autoimmune liver disease/other forms of chronic liver disease. CONCLUSION: Our data are in line with existing data from US samples and also extend these findings to include those with other forms of chronic liver disease. These data highlight the importance of individualized care for young adults, regardless of condition type or healthcare setting, and of clinicians managing their expectations regarding what is considered appropriate condition management in early adulthood.

Adherence, Mental Health and Illness Perceptions in Autoimmune Liver Disease: Looking Beyond Liver Function Tests.

OBJECTIVES: Autoimmune liver disease is commonly diagnosed during adolescence; a period associated with a higher prevalence of non-adherence, mental health concerns and worse health outcomes. The aim of the study was to explore adherence patterns, mental health and illness perceptions in young people with autoimmune liver disease. METHODS: Young people with autoimmune liver disease attending a multidisciplinary young adult clinic (16-25 years) completed an electronically administered questionnaire battery. Demographics and disease-related data were collected. RESULTS: Sixty-eight (37 female), median age 17.9 (range 15-22) years completed the screening. Only 51.5% of patients were in remission (aspartate and alanine aminotransferase <36 IU//l) whereas 73% self-reported their adherence >80%. Compared to patients in remission, those not in remission required more immunosuppression, were more depressed and worried but reported a better understanding of their illness. A small but significant correlation was found between aspartate aminotransferase/alanine aminotransferase and adherence percentage (r = -0.27, P < 0.05 and r = -0.29, P < 0.05 respectively). Age was inversely associated with adherence (r = -0.31, P < 0.05), and older patients were more worried (r = 0.44, P < 0.001) and emotionally affected by the condition (r = 0.32, P < 0.01). Adherence behaviours such as forgetting to take medications (63%), taking medications more frequently before attending appointments (44%) and not having a routine for medications (31%) were prevalent, 7% reported intentional non-adherence. CONCLUSION: Sup-optimal adherence to treatment is common in young people with autoimmune liver disease and associated with mental health problems and certain illness perceptions. Routine exploration of adherence beliefs and barriers to adherence in a non-judgmental, collaborative way is essential to improve outcome in this vulnerable population.

A therapeutic group for young people with diverse gender identifications.

Young people are presenting to specialist gender services in higher numbers than before and many with significant psychosocial difficulties. Negative experiences of stigma, difficult peer relationships and discrimination exacerbate distress and psychological difficulties, negatively impacting wellbeing and resilience. Social support is advocated as a means of supporting young people with diverse gender identifications, such as through peer support groups. This article describes the establishment of a young persons' group in 2011 within the United Kingdom's Gender Identity Development Service (GIDS), for those attending the service as a means of enabling their coping with difficult experiences and facilitating their wellbeing and resilience through effective social support. The group was evaluated using qualitative and quantitative measures and has subsequently run each year. Now in its sixth year, the authors reflect on their learning and experiences.

Thinking about ethnicity and gender diversity in children and young people.

BACKGROUND: Little is known about how social and cultural variants interact with gender identity development. This article aims to identify the ethnicities of children and young people referred to the United Kingdom's national Gender Identity Development Service (GIDS), and compare the ethnicity data with the UK child population and referrals to Child and Adolescent Mental Health Services (CAMHS). METHODS: GIDS referrals made between April 2012 and April 2015 for children and young people were retrieved. Ethnicity data were obtained by the '16 + 1' ethnicity list. Chi-square and t-tests were performed on the demographics. RESULTS: Less than 10% of the 995 referrals at GIDS were from Black and minority ethnic (BME) groups - an underrepresentation as compared with both the national population and CAMHS figures. No significant differences in ethnic representation were found between the demographic birth-assigned sexes, across age groups, or year of referral. CONCLUSIONS: Hypotheses proposed for this underrepresentation take into account both the potential barriers to accessing services and the possibility of cross-cultural variations in the conceptualisations of gender, gender roles and gender diversity. Ethnicity, culture and religion, and their overlapping relationship with gender need further exploration.

Smoking and common mental disorders in patients with chronic conditions: An analysis of data collected via a web-based screening system.

OBJECTIVE: Smoking is the largest preventable cause of death and disability in the UK and remains pervasive in people with mental disorders and in general hospital patients. We aimed to quantify the prevalence of mental disorders and smoking, examining associations between mental disorders and smoking in patients with chronic physical conditions. METHOD: Data were collected via routine screening systems implemented across two London NHS Foundation Trusts. The prevalence of mental disorder, current smoking, nicotine dependence and wanting help with quitting smoking were quantified, and the relationships between mental disorder and smoking were examined, adjusting for age, gender and physical illness, with multiple regression models. RESULTS: A total of 7878 patients were screened; 23.2% screened positive for probable major depressive disorder, and 18.5% for probable generalised anxiety disorder. Overall, 31.4% and 29.2% of patients with probable major depressive disorder or generalised anxiety disorder respectively were current smokers. Probable major depression and generalised anxiety disorder were associated with 93% and 44% increased odds of being a current smoker respectively. Patients with depressive disorder also reported higher levels of nicotine dependence, and the presence of common mental disorder was not associated with odds of wanting help with quitting smoking. CONCLUSION: Common mental disorder in patients with chronic physical health conditions is a risk factor for markedly increased smoking prevalence and nicotine dependence. A general hospital encounter represents an opportunity to help patients who may benefit from such interventions.

Liver transplantation and adolescence: The role of mental health.

Young people (YP) with chronic illness have higher rates of mental health problems than the general population, with psychosocial complexity associated with nonadherence and poorer health outcomes. This study aimed to describe the prevalence of anxiety and depression in YP after liver transplantation, with autoimmune liver disease and other chronic liver diseases, identify the factors YP attribute their distress to and the relationship between anxiety/depression, and describe YP's beliefs about their illness and treatment. An electronically administered questionnaire battery was given routinely to YP attending an outpatient liver transition clinic; 187 YP participated, of which 17.7% screened positive for anxiety or depression. There were no significant differences between disease groups. This is significantly higher than the prevalence of common mental health problems in the general adolescent population. Patients most frequently attributed their distress to fatigue, sleep difficulties, financial concerns, problems at work/school, worry, and low self-esteem. Higher levels of depression and anxiety were significantly associated with specific illness and treatment beliefs but not with perceived understanding of illness or treatment control. In conclusion, the increased prevalence of mental health problems in YP and the intertwined nature of these with their physical health outcomes provide evidence that holistic care should be delivered as standard for this age group. Liver Transplantation 22 1544-1553 2016 AASLD.

Post-transplant adjustment--the later years.

As survival rates for pediatric solid organ transplantation have continued to improve, researchers and healthcare providers have increasingly focused on understanding and enhancing the HRQOL and psychosocial functioning of their patients. This manuscript reviews the psychosocial functioning of pediatric transplant recipients during the "later years," defined as more than three yr post-transplant, and focuses on the day-to-day impact of living with a transplant after the immediate period of adjustment and early years after surgery. Key topics reviewed include HRQOL, cognitive functioning, impact on the family, regimen adherence, and transition of responsibility for self-management tasks. Overall, pediatric transplant recipients evidence impairment in HRQOL, neuropsychological outcomes, and family functioning as compared to non-transplant recipients. However, the degree of impairment is influenced by a variety of factors including, disease severity, age, solid organ type, and study methodologies. Studies are limited by small samples, cross-sectional design, and the lack of universal assessment battery to allow for comparisons across solid organ populations. Areas for future research are discussed.

Understanding cannabis use in first-episode psychosis: an application of the Theory of Planned Behaviour.

AIM: The study aims to examine whether an extended Theory of Planned Behaviour (TPB) model predicts the frequency of past and intended cannabis use in young adults with psychosis. METHODS: A cross-sectional correlational design was used with 32 participants (aged 18-36 years old) within 3 years (mean = 7 months) of their first psychotic episode. TPB variables and a measure of social influence (descriptive norms) were measured. RESULTS: The TPB accounted for a large amount of the variance in both the frequency of past cannabis use (25%) and in the intended frequency of future cannabis use (36%). The addition of descriptive norms (beliefs about the frequency of others' cannabis use) accounted for a significant additional amount of the variance in past use (19%). Adding the 'friends' component of descriptive norms only led to a model that accounted for 52% of the variance in past cannabis use. CONCLUSIONS: Descriptive social norms should be considered when trying to understand cannabis use in early psychosis. Interventions should take account of the individual's attitude towards cannabis, their perceived control over its use and its social context.

Self-reported quality of life in children and young people with chronic kidney disease.

Chronic kidney disease (CKD) would be expected to impact upon the quality of life (QoL) of children and young people; therefore, it is important that they are given the means to express their opinions about how they perceive their own QoL. We used the Generic Children's Quality of Life Measure (GCQ) in 225 paediatric renal patients (118 male, mean age 13.6 years, range 6.2-18.9 years) from seven UK centres. Of these, 47 were on dialysis (23 on haemodialysis), 128 were post-transplant (47 pre-emptive) and 49 had advanced CKD. A comparison between the 124 renal patients (65 male, mean age 11.2 years) in the same age range as the general population (6-14 years) showed a higher GCQ QoL score for the renal patients (p = 0.02). Analysis of the whole group of renal patients (n = 225) revealed no significant difference between the mean GCQ scores of participants in various treatment modalities (p = 0.26) and no significant differences between gender (p = 0.90) and age group (p = 0.44). The results indicate that young people can perceive their QoL as good despite living with what others may perceive as severe limitations. This may seem counter-intuitive, but QoL is a subjective measure and thus may be difficult to predict from observable limitations (health status). The GCQ is an ideal measure for use in annual departmental audits of generic paediatric QoL and may help to individualise the work of psychosocial teams with each patient.