Successes and improvements in a paediatric DSD (Differences in Sexual Development) clinic
Zara Yamani (Clinical School, Cambridge University), Aparna Balaji, Emily Gelson, Jane MacDougall (Department of Reproductive Medicine at Cambridge University Hospitals)
1. Objective:
To evaluate patient and staff satisfaction at a tertiary Paediatric Differences of Sexual Differentiation (DSD) clinic using a structured questionnaire, as a means of improving the quality of care.
2. Design
Patient satisfaction is a key indicator of care quality and plays a vital role in improving clinical outcomes. An audit questionnaire containing ratings and free text was developed by the MDT clinical psychologist. It reflected the values outlined in the NHS Patient Experience Framework, and was approved by QSIS and the Patient Experience Department. Questions assessed: accessibility, communication with healthcare providers, responsiveness to patient needs, quality of care, facility environment and overall experience. It was distributed to staff and parents of patients attending DSD clinic.
3. Method
Data was collected using an anonymous questionnaire and included 22 participants. From August 2017-January 2018, 12 (43%) patient and 10 (77%) staff questionnaires were returned and reviewed to identify successes, improvements and actions which have been implemented in advance of a re-audit.
4. Results
•Patients valued being seen by a knowledgeable MDT with good communication and organisation.
•However, patients reported receiving conflicting information from different specialists.
•Recommended improvements, which have now been implemented, included refining team identity and arranging pre-team meetings, improving transition from paediatric to adult care and offering a debrief sheet / call supported by written resources.
• Also, test results should be followed-up pre-clinic and a structure should be developed for pre-clinic discussions. Designated time for this now assists in forming a coherent team identity.
• Post-clinic wrap-up provides opportunity for questions and signposting to resources.
•Transition could be helped by asking both family and child (as appropriate) about understanding, questions, expectations and support.
5. Discussion
The importance and effectiveness of the MDT in managing complex patients was reinforced, in terms of:
Screening, treating and following up the conditions associated with DSDs (which are highly variable between individuals)(1, 2) to optimise health outcomes and fertility.(3)
Avoiding losing patients to follow-up(4) especially around adult-child transition.(6, 7)
Incorporating psychosocial aspects to provide holistic, satisfying care.(7, 8, 9, 10)
Limitations included: feedback was not received from 57% of attendees so the sample may be biased due to being confounded / incompletely representative. Not all aspects of clinical care were included in this survey.
6. Conclusions
•Patient satisfaction would be improved by better coherence, communication, and support outside of clinic.
•Importance of dialogue was reinforced: clinician communicating clearly and effectively, with patients able to understand information and being encouraged to ask questions.
•Findings of strengths and areas for improvement were instrumental in guiding policy, enhancing patient-centred care, and fostering a culture of continuous quality improvement.
•Having made the changes, we are now planning to re-audit using the same questionnaire as a tool for ongoing monitoring of patient satisfaction and care quality.
References:
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