Current Controlled Trials, www.controlled-trials.com, ISRCTN58523390.

Aims Adolescents with chronic conditions can prove difficult to engage. Each clinical encounter must be maximised to provide a positive experience that encourages continued attendance and a collaborative relationship between doctor and patient. This project investigated the out-patient experience of adolescents with sickle cell disease. Methods A questionnaire comprising both qualitative and quantitative questions was distributed to patients aged 13 to 21 years who attended haematology clinics between January and April 2014. Results 31 adolescent patients completed the questionnaire (response rate of 94%). When asked to rate their out-patient experience, the mean score was 6.7/10. Qualitative questioning highlighted themes of dissatisfaction around long waiting times and lack of waiting room activities. There was a wide variation in reported waiting times (see Figure 1). There was a significant relationship between higher waiting times and lower overall out-patient experience score. Abstract G410(P) Figure 1 Waiting times Positive comments were made about ‘friendly and helpful’ health professionals with a rating score of 8.1/10 for staff friendliness. During the consultation the majority of patients felt they had enough time to discuss their concerns. Older patients were more likely to have the opportunity to speak to the doctor or nurse without a parent present (see Figure 2). Of those who did not have this opportunity, 23% stated they would like to talk to a doctor alone. Abstract G410(P) Figure 2 Discussion with doctor Conclusion There is room to improve the out-patient clinic experience for patients with sickle cell disease. Specifically, reducing waiting times should be given priority. Both clinicians and patients need to arrive promptly to prevent a backlog delay. The clinic environment could be modified to provide a more comfortable and stimulating place for adolescents. Although financial and spatial constraints limit refurbishment, patient feedback suggests simple measures such as installing a water dispenser in the paediatric waiting room may improve patient satisfaction. Finally adolescent patients could be given more opportunity to speak to clinicians without a parent present and this could be introduced at a younger age. However, both our doctors and the adolescents themselves reported that there is often parental resistance to this, which needs to be overcome.

Background:The increasing use of immunosuppressive drugs and reports of infection rates in rheumatoid arthritis (RA) registries highlights the need to understand rates of common vaccinations, influenza and pneumococcal, and attitudes to vaccination in Australian RA cohorts. Aims:To investigate influenza and pneumococcal vaccination rates and attitudes to vaccination in a specialist RA clinic and to examine the infection risk in unvaccinated patients Methods: A cross sectional study of 193 consecutive RA clinic patients was performed using a survey of influenza and pneumococcal vaccination status, and reasons for non-vaccination were documented. Infection risk in non-or never-vaccinated patients was calculated using the Rheumatoid Arthritis Observation of Biologic Therapy (RABBIT) risk score.Results: RA cohort demographics were representative of a standard RA population. 70% of patients were seropositive and 29% were current smokers. 83% of patients were on a non-biological disease modifying anti-rheumatic drug, most commonly methotrexate (67%) and hydroxychloroquine (33%). 38% of patients were on biological disease modifying anti-rheumatic drugs (bDMARDs), predominantly anti-TNF alpha inhibitors. 43% of patients were currently taking steroids. The mean DAS28 in this cohort was 3.3, suggesting moderately active disease. 34% of patients were unvaccinated, of which half (51%) had never been vaccinated. In the never vaccinated group and the not-currently vaccinated group, the commonest reason for non-vaccination was 'worries about the safety of the vaccine, including side effects'. The mean age in the non-vaccinated group was 48, the mean steroid dose was 1.96 mg, average numbers of DMARDs in this group was 2.9 concomitant biologic therapy was prescribed in 46% of patients. The risk of infection was between 1.4 -3.5%/year. Conclusion/impact:This study highlights incomplete influenza and pneumococcal vaccination in an at-risk immunosuppressed Australian RA cohort. Concern regarding vaccine safety was the primary reason for non-vaccination. This highlights the need to tailor information strategies to particular sub groups within the cohort. The uptake of emerging vaccines is likely to be influenced by prevailing attitudes to vaccination and a patient centred approach which quantifies and explains risk -benefit for individual patients may be required to translate the therapeutic impact to whole cohorts of immunosuppressed patients.