Members of BSPED who wish to undertake a national audit in a topic relating to Endocrinology or Diabetes should send a brief proposal (one side of A4 and clearly stating what assistance is required from BSPED) to the Audit/Peer Review Officer Dr Indi Banerjee at firstname.lastname@example.org. Thereafter the proposal will be discussed for approval by the BSPED Clinical Committee. A report of a completed audit should be submitted to the Clinical Committee.
The responsibility for audit studies endorsed and supported by BSPED moved to become part of the remit of the BSPED Clinical Committee in 2011.
Recombinant human growth hormone (GH) or Somatropin treatment in children and young people is licensed in the UK [NICE HTA 188, 2010] for the following diagnosis:
- Growth Hormone Deficiency (GHD)
- Turner Syndrome (TS)
- Chronic Renal Insufficiency (CRI)
- Prader-Willi Syndrome (PWS)
- born Small for Gestational Age (SGA) with subsequent growth failure at 4 years of age or later
- Short Stature Homeobox-containing gene (SHOX) deficiency
It is usually prescribed by, or in collaboration with, a paediatric endocrinologist, most of whom are members of the British Society for Paediatric Endocrinology and Diabetes (BSPED).
The BSPED National Growth Hormone (GH) audit was initiated in January 2013 to establish an ongoing audit, including linked anonymised data, of all children and adolescents newly-prescribed GH treatment in the UK. BSPED GH Audit is not ongoing at present. The aim of this audit was to:
- allow monitoring of ongoing trends in prescribing practice
- facilitate future long-term follow-up of individuals receiving GH therapy during the childhood/adolescent years
This audit also fulfilled a recommendation from NICE. Every UK clinician (including non-BSPED members) who initiates GH therapy in children and/or adolescents in the UK was invited to submit data. Every paediatric patient aged ≤ 16.0 years newly starting GH treatment in the UK was eligible to be included. Linked anonymised data was being collected and collated quarterly by the Office for Rare Conditions in Glasgow, on behalf of the BSPED Clinical Committee. The BSPED Growth Hormone Audit reports are available to BSPED members only. The reports include information about the total number of patients started on GH for defined periods, and also by gender, region and indications for the treatment.
Understanding multi-disciplinary team (MDT) DSD services across the UK.Danielle Eddy, Mars Skae, Julie Alderson & Liz Crowne
Aim: Describe current UK DSD services, share areas of best practice and collate any development needs.
Methods: Leads of the 22 UK DSD tertiary centres were invited in June/ July 2019 for semi-structured telephone interviews to discuss their DSD service.
Results: 19/22 DSD centres were interviewed: 16 had MDT services, 2 did not and 1 had an MDT in development.
Most MDT services had: paediatric endocrinology, urology, clinical nurse specialist (CNS) and clinical psychology. The ‘most wanted’ MDT member a clinical psychologist. Only 29% of service leads had job plan time allocated for the DSD MDT; only 21% of services had administrative support.
Interviews revealed considerable variation across the UK in:
• MDT mean frequency and duration: 9 weeks and 90 minutes respectively. 64% of MDTs are held the same day as clinic.
• Keyworkers: 7/16 (48%) had identified keyworkers, 3 were paediatric CNSs, 3 consultant paediatric endocrinologists and one a clinic coordinator. Interviewees were keen for key workers but cited barriers, chiefly lack of time and funding.
• MDT documentation and communication of clinic outcomes: mixture of proformas, patient notes and clinic letters.
• Service Feedback: 6 centres did not collect feedback; others used a variation of in-house questionnaires, audits, Glasgow patient questionnaires, family feedback days and PALS.
• On-call service: 14/19 centres provide 24 hour on-call service; 12 seeing referrals the same/ next working day. 5/19 centres reviewed referrals 3 -7 days after referral. The DSD referral pathway for babies with bilateral impalpable testes or severe hypospadias was variable; either directly going to urology or referred directly to DSD service.
• Psychology provision: reported in 53% of centres. 13/16 MDTs had insufficient psychology provision.
Conclusion: Teams were very proud of their motivation and achievements in developing holistic MDT DSD care despite lack of resources.
Identified needs for services were principally better access to psychological services and reliable access to translation services for BAME families, further CNS recruitment if CNSs are to act as key workers, and administrative support to save time for clinicians to develop DSD services guided by family feedback.
Consensus for next steps: definition of a core group of MDT members with sufficient time dedicated to the MDT and inclusion of DSD MDT responsibilities in job plans. Identify recommended frequency of MDT meetings and time to referral, and structure for systematic data collection and service evaluation.