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.
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.
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.
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