Background Patients attending the UK’s only ‘Centre of Excellence for Childhood Lupus’, routinely attend clinic appointments 3 monthly. During appointments there is pressure for clinicians to review complex medical presentations in a timely manner. As a service we recognise the importance of holistic, multi-disciplinary care and the need to consider the patients’ and families’ priorities in relation to lupus and its management.
The challenges faced by patients in asking questions and asserting influence over a medial consultation are widely acknowledged.
Aim To develop a ‘screening tool’ to facilitate this process.
Method The tool was developed through consultation with patients, parents and the multi-disciplinary team. Age-appropriate versions were developed to facilitate completion by children as well as their parents’. Parents identified concerns regarding their child’s health as well as areas in which they were struggling themselves regarding their child’s health.
Patients and their parent were asked to complete the screening questionnaire in the waiting-room before clinic. Their responses were reviewed by clinicians present thus influencing conversations within the appointment. Where appropriate, families could meet with members of the multi-disciplinary team separately.
Completed questionnaires were filed within patients’ case notes. Data were collated to inform lupus service development.
Results 36 screening tools were completed (19 young people and 17 parents) over a 10 month period.
The most frequently reported concerns for young people were: fatigue (81%), appearance (58%) and pain (53%). Among parents, the greatest concerns were their child’s fatigue (65%), pain (65%), emotions (59%), sleep (59%) and support from school (53%). Parent’s concerns for themselves were associated with their child’s future and their emotions about their child’s health (59%).
Conclusion Questionnaires received positive feedback from service-users and staff regarding ease of completion, utility for highlighting issues for discussion within clinic or otherwise and value in normalising the role of psychology in the management of lupus.
The data have been used to influence service development including development of a ‘health passport’ to facilitate communication between family, hospital and school and development of workshops regarding fatigue management and transition.
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