Society for Endocrinology UK Guidance on the Initial Evaluation of a Suspected Difference or Disorder of Sex Development (Revised 2021)

S. Faisal Ahmed; John Achermann; Julie Alderson; Naomi S. Crouch; Sue Elford; Ieuan A. Hughes; Nils Krone; Ruth McGowan; Talat Mushtaq; Stuart O'Toole; Leslie Perry; Martina E. Rodie; Mars Skae; Helen E. Turner

Disclosures

Clin Endocrinol. 2021;95(6):818-840. 

In This Article

The Role of Peer Support and Advocacy Groups

Based on lived experiences across the life span, peer groups can provide ongoing support to parents and the affected individual, including opportunities to gather and explore practical information, promote autonomy, and build knowledge and self-confidence regarding the diagnosis of DSD.[29] For parents, gathering, using and questioning information will shape their understanding as they often act as the advocate for their child or young person and therefore need to be fully informed about DSD practice, short- and long-term outcomes of treatments and health risks and psychological challenges for their child. By being in touch with others with a similar condition and engaging with a peer group, people can gain a sense of empowerment and the whole experience may also normalize a condition which may have previously been perceived as a source of stigma. Peer groups can provide a range of such information via websites and newsletters as well as via telephone and online forums and group meetings for both families and professionals.[30] Contact details of national peer groups and web resources such as CAH Support Group (livingwithcah.com) and dsdfamiles (dsdfamilies.org) should be supplied as routine as part of any written information. Whilst such groups and resources are not subject to a standard process of national accreditation in the UK, the co-involvement of local clinical experts as advisors means that many groups function within the framework of clinical practice in the UK. It is possible that families or individuals may prefer to talk to others known to the MDT or regional services. The creation of a local pool of support volunteers, contributing to education and support events is a valuable adjunct to a regional service. A patient's interest in peer contact may change over time and therefore this should be reviewed intermittently by the MDT. Peer support groups and patients can also work in partnership with healthcare providers at several levels in improving the quality of care and research.[30] For instance, through international projects such as DSDnet, I-DSD, I-CAH and, more recently Endo-ERN, patients and peer groups have been able to provide guidance on health care and research.[14]

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