Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. J Sex Med. 2013 Aug; 10(8): 1953-60.

DOI: 10.3410/f.718052034.793481314

Abstract   

INTRODUCTION: The management of disorders or differences of sex development (DSD) remains complex, especially with respect to parents’ decision for or against early genitoplasty. Most parents still tend to disfavor postponing surgery until the child is old enough to provide consent.

AIM: To identify the determinants of parental decisions for or against early sex assignment surgery in DSD children, and in particular to assess the influence of contrasting behavior of health-care professionals and the information they dispense.

METHODS: Preliminary data analysis from a focus group identified two broad approaches to counseling information. Two six-minute counseling videos were produced on this basis: one medicalized, by an endocrinologist, the other demedicalized, by a psychologist. Third-year medical students (N = 89) were randomized to watch either video as prospective parents and report its impact on their decision in a self-administered questionnaire.

MAIN OUTCOME MEASURES: Statistical analysis of questionnaire responses regarding decisions for or against surgery, including self-assessed impact of potential determinants.

RESULTS: Thirty-eight of eighty-nine “parents” (43%) chose early surgery for “their” child, including 27/41 “parents” (66%) shown the medicalized video vs. 11/48 (23%) shown the demedicalized video (P < 0.001). Desired aims for “their” child also differed significantly depending on the counseling approach viewed. Yet “parents” perceived their personal attitudes on a four-point Likert scale as the main influence on their decision although their “attitude” was significantly shaped by the video.

CONCLUSIONS: Parental decisions concerning early sex assignment surgery for DSD children depend on the health professional counseling received, to a degree of which neither parents nor professionals appear fully aware. In the absence of conclusive data for or against early surgery, there is a danger of medicalized or demedicalized parentalism resulting in irreversible and inadequately grounded decisions, regardless of the consensus statement of 2005 and the subsequent call for multidisciplinary management.

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Summary  

Perhaps the most contentious aspect of the clinical management in disorders of sex development (DSD) involves genital surgery in the infant or young child. In contrast to research on medical or surgical decision-making in adult populations, little is known about the communications between surgeons, other providers and parents of young DSD-affected children regarding the risks and benefits of early surgery. Streuli and colleagues adopted a creative research paradigm to explore the potential influence of ‘medicalized’ versus ‘demedicalized’ communications on decisions in favor or against early surgery. Participants in this study were third year medical students asked to assume the role of the parent of a child recently born with ambiguous genitalia. The ‘parents’ were randomly assigned to view a 6-minute video that either emphasized a medicalized rationale for early surgery (e.g. treatment should be function-oriented, treatment regimens are predetermined and hospital-based) or a demedicalized approach (e.g. function is multifactorially determined, support is individualized and dynamic).

Among the participants viewing the medicalized video, 27/41 (66%) opted for early surgery. In contrast, 11/48 (23%) shown the demedicalized video chose early surgery (p<0.001). Of equal or greater note were the explanations provided for the decision: participants in both the medicalized and demedicalized video groups identified personal values, opinions and attitudes as most influential in their decision and rated the video as having little or no influence on their decision.
Limitations of analogue research designs notwithstanding, this study suggests powerful influences of even brief messages by experts in shaping the choices of those making proxy decisions on behalf of young children. Despite this strong effect, the ‘parent’ appeared to be unaware of the factor driving their decision.

Such findings would not come as a surprise to researchers studying the processes involved in decision-making among adults regarding their own care. Recognition that the promotion of shared decision making is helped by interventions that systematize communications between providers and patients has led to the burgeoning development of decision support tools {1,2}. The time may be right to systematically focus our attention on how procedures and interventions are described and discussed with parents of young children born with atypical genitalia.

References 

1. Interventions for improving the adoption of shared decision making by healthcare professionals. Légaré F, Ratté S, Stacey D, Kryworuchko J, Gravel K, Graham ID, Turcotte S. Cochrane Database Syst Rev 2010; (5):CD006732 PMID: 20464744 DOI: 10.1002/14651858.CD006732.pub2

2. Decision aids for people facing health treatment or screening decisions. Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Légaré F, Thomson R. Cochrane Database Syst Rev 2011; (10):CD001431
PMID: 21975733 DOI: 10.1002/14651858.CD001431.pub3

Recommended Citation

Sandberg D: F1000Prime Recommendation of [Streuli JC et al., J Sex Med 2013, 10(8):1953-60]. In F1000Prime, 14 Aug 2013.