Methodological Issues for Psychological Evaluation across the Lifespan of Individuals with a Difference/Disorder of Sex Development

Abstract

The aim of the current report is to provide guidance relevant to psychological evaluation for healthcare providers and researchers working in the field of disorders of sexual development (DSD). In doing so, we give careful consideration to methodological issues and limitations that may influence the utility of investigations. For example, rarity and heterogeneity of DSD conditions restrict sample sizes when conducting evaluations aimed at establishing condition-specific psychological outcomes. At the same time, the potential for stigmatization by virtue of conducting psychological evaluations is particularly high given the fundamental contribution of sex and gender to one's sense of self and integrity. This article will provide basic theory for psychological evaluation as well as give a review of specific measures that can be employed for clinical purposes depending on a variety of parameters, including life stage of the patient and goal(s) of the evaluation. Care providers and service users may benefit from guidance in coping with the difficulties inherent in having and/or treating DSD. The potential for identification with the patient with DSD is higher than in other domains of medicine because sexual and gender identities are fundamental to all humans and are continually evolving from a sociological perspective.

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

“…The aim of these questions is to give patients and families support relevant to physical, psychological and emotional aspects of DSDs in an open-minded and caring environment 150 . A review of psychological assessment across the lifespan addresses the nuance and complexities of gender development in DSDs 152 . C o n S e n S u S S tat e m e n t…”

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet

“…The applied methodology depends on the specific goal of such an assessment. No DSD-specific questionnaires to assess psychological and/or psychosexual functioning currently exist, and interpretation of results is seriously hampered by methodological limitations, highlighting the need for psychologists with good knowledge of and experience with the various conditions and for further professional training in this field (65).…”

“…Inappropriate focus or a normative perspective on genital, sexual, and psychological issues may cause annoyance or stigmatisation. Therefore, questions about a person's gender experience and gender well-being should be posed with respect for the individual's integrity and in an open-ended way that does not presume a particular gender or increase shame and stigma (65). Both children and adolescents should be given the possibility to talk about these issues without a parent being present (13).…”

Controversies on Timing of Sex Assignment and Surgery in Individuals With Disorders of Sex Development: A Perspective

“…The primary fear of those who manage such cases is that the originally designated sex will later be repudiated by the patient. However, the methodological problems implicit in longitudinal research on the psychological development of individuals with DSD are also under discussion (38). A major obstacle in this discussion is the heterogeneity of the cases.…”