K. L. Shaw

Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis:

This article describes the development and initial evaluation of an evidence-based transitional care programme recently implemented in a multicentre controlled trial in the United Kingdom. The individual components of the programme are described. Evaluation of the acceptability and utilization of these components employed questionnaires administered to users (adolescents with juvenile idiopathic arthritis and their parents) and providers (rheumatology health professionals). The results confirm the acceptability and utilization of the programme components in addition to further innovative developments during the course of the study. In conclusion, the evidence-based transitional care programme components reported here are acceptable and useful to both user and provider and are potentially feasible in clinical practice in a revised format.

Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care

Objective: To assess the provisions made for the transfer of adolescents with juvenile idiopathic arthritis to adult rheumatology clinics in the UK and the impact of a transitional care programme. Methods: An audit of the documentation of the provisions made for transfer in 10 centres participating in a controlled trial of transitional care. Each centre conducted a retrospective case note audit of the recent patients transferred to adult care before and 12–24 months after the start of the trial. Demographic details, age when transition was first discussed, age at transfer, transitional issues, multidisciplinary team involvement, adolescent self advocacy, and readiness were documented. Results: There were improvements at follow up in documentation of transitional issues, disease specific educational needs, adolescent readiness, and parental needs with the exception of dental care, dietary calcium, and home exercise programmes. The age at which the concept of an independent clinic visit was introduced was lower (mean (SD): 16.8 (1.06) v 15.8 (1.46) years, p = 0.01) but there were no other changes in age related transitional milestones. Significantly more participants had preparatory visits to the adult clinic, had a transition plan, and had joint injections while awake at follow up. Conclusions: The improvement in documentation suggests that involvement in the research project increased awareness of transitional issues. The difficulty of changing policy into practice was highlighted, with room for improvement, particularly at the paediatric/adult interface. The reasons for this are likely to be multiple, including resources and lack of specific training.

‘I just thought it was normal aches and pains’: a qualitative study of decision-making processes in patients with early rheumatoid arthritis

OBJECTIVE Effective treatment can only be given during the early stages of RA if patients are seen early. However, many patients delay for prolonged periods before seeking medical advice. This study explores factors influencing the decision to seek medical advice in RA patients. METHODS In-depth, semi-structured interviews were carried out with 24 patients. Purposive sampling ensured a cross-section in terms of time to presentation, gender, age and ethnic background. Interview transcripts were analysed and themes identified using established methods. RESULTS Four main themes influenced the decision to seek medical advice: (i) symptom experience: the severity of symptoms and their impact on functional ability; (ii) symptom evaluation: the patients explanation for their symptoms and recognition of their significance; (iii) knowledge of RA and available therapies; and (iv) experience of and attitudes towards health care providers. A significant and rapid impact of the disease on functional ability characterized those presenting early. Many developed an explanation for their symptoms that related to preceding activities. Recognition that this explanation was inadequate to explain symptom progression frequently prompted a consultation. Only one patient sought advice because she thought that she might have RA. CONCLUSIONS Symptom evaluation is a key factor influencing how quickly medical advice is sought in other diseases. In contrast to the situation with many cancers where there is widespread association of symptoms and signs with the eventual diagnosis, this was not the case in RA. Our findings should inform strategies to reduce delays in help-seeking in people with early RA.

Friends United: An Evaluation of an Innovative Residential Self-Management Programme in Adolescent Rheumatology

Independence in activities of daily living, self-advocacy and peer support are important aspects of adolescent development. These skills are potentially affected by chronic rheumatic diseases and are worthy of attention by occupational therapists and other members of the multidisciplinary team. An innovative 4-day residential programme for young people diagnosed with chronic rheumatic disease, known as the ‘Independence Break’, was evaluated in order to determine its perceived benefits. The participants were invited to complete a brief evaluation form immediately after the trip to determine the benefits of participation in the programme. The levels of continuing social contact within the group were established 4 months later during a subsequent telephone call. Thirty young people (median age 14 years) attended the 4-day programme and reported friendship and improved performance in activities of daily living as the major benefits. The majority stayed in touch with at least one other person, with more girls staying in touch than boys. The preferred method of communication was text messaging. Overall, the programme was perceived to be a valuable experience and offered the young people an opportunity to develop informal peer support networks. The potential of text messaging within adolescent rheumatology is also highlighted.

The evidence base for transition is bigger than you might think

We would like to congratulate Nagra et al 1 on their impressive work and the impact of Ready Steady Go programme on raising the profile of transitional care in the NHS. The checklists that provide the foundation for the Ready Steady Go programme were originally developed in 2002–2003, following an extensive national needs assessment, funded by Arthritis Research UK and involving young people across the UK and all major stakeholders.2–4 These checklists (originally called individual transition plans) were based on the needs identified, the core principles of early, mid and late adolescent development, the national school curriculum and the Ontrac programme in Canada.5 The checklists formed an integral component of one of the first evidence-based programme of transitional care in any chronic illness, and involved 10 UK rheumatology centres and 308 young people and their parents,6 which included an objective evaluation of the programme and reported positive benefits.7 Since this time, the checklists have been used in the rheumatology service at Birmingham Childrens Hospital8 irrespective of condition and in various other specialties both nationally and internationally. The adolescent rheumatology …

Unmet education and training needs in adolescent health of health professionals in a UK children's hospital: Training needs in adolescent health

Aim: To determine the perceived education and training needs in adolescent health of health professionals. Design: Cross‐sectional survey Setting and subjects: Hospital staff in a UK childrens hospital. Outcome measures: perceived barriers, confidence, knowledge, skill and prior teaching in key adolescent health subject areas. Results: The hospital survey was completed by 159/1400 professionals representing a completion rate of 11%. Doctors and staff from ‘Professions allied to medicine’ rated ‘lack of training’, ‘lack of teaching materials’ and ‘lack of community resources’ as the main barriers to providing developmentally appropriate care. Sixty per cent of hospital respondents had received no prior specific training in adolescent health. All but four topics were perceived to be of very high or high importance by the majority of respondents (54–90%). Low scores in perceived knowledge, confidence and/or skill were reported in nine key subject areas (including adolescent mental health and substance use). Differences between doctors and professions allied to medicine were observed in a minority of areas.

Young people's expectations of and satisfaction with transitional care from paediatric and adult care perspectives

Transitional care is now embedded into national health policy and has recently been specifically highlighted as a key area for attention in the forthcoming review of childrens services by Sir Ian Kennedy. Aims To examine young peoples expectations of and satisfaction with transitional care in paediatric and adult settings. Methods Young people aged 11–21 years with a chronic condition diagnosed under 19 years of age requiring long-term follow-up in secondary care were recruited from specialty clinics (n=17) in a paediatric hospital and its neighbouring adult facility. Expectations of and satisfaction with healthcare delivery were assessed using the self-completed “Mind the Gap” questionnaire which measures the gap between the adolescents expectation of best care and their perception of the actual service provided. The response format is a seven-point Likert scale anchored by “strongly disagree” at one and “strongly agree” at seven. The scale measures three dimensions of healthcare: environment, provider characteristics and process issues. Results 247 young people participated in the study, 157 (median age 15.04 years range 11.17–20.42) in the paediatric clinics and 95 (median age 19.58, range 17.17–21.92) in the adult clinics. There were no significant differences between the overall satisfaction and the three dimensions between the young people in the paediatric setting when compared to the adult setting. All participants rated provider characteristics as most important and environment as least important. Ratings of current service delivery were significantly lower than young peoples expectations. Young people were least satisfied with the environment and most satisfied with health provider characteristics. Young people rated health providers knowledge of the young persons condition including latest treatments, and their honesty as the most essential aspects of best practice. Conclusions The significant gap between young peoples expectations of best care and their perception of the actual service provided in all domains in both settings suggests further improvement in transitional care delivery is needed by both paediatric and adult care providers. Since provider characteristics are most important to young people, support and investment for continuous professional development for staff is integral to young person friendly transitional care services.