Patient advocacy and DSM-5

Dan J Stein,Katharine A Phillips

doi:10.1186/1741-7015-11-133

Abstract

The revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) provides a useful opportunity to revisit debates about the nature of psychiatric classification. An important debate concerns the involvement of mental health consumers in revisions of the classification. One perspective argues that psychiatric classification is a scientific process undertaken by scientific experts and that including consumers in the revision process is merely pandering to political correctness. A contrasting perspective is that psychiatric classification is a process driven by a range of different values and that the involvement of patients and patient advocates would enhance this process. Here we draw on our experiences with input from the public during the deliberations of the Obsessive Compulsive-Spectrum Disorders subworkgroup of DSM-5, to help make the argument that psychiatric classification does require reasoned debate on a range of different facts and values, and that it is appropriate for scientist experts to review their nosological recommendations in the light of rigorous consideration of patient experience and feedback.

Highlights

The current revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) provides a useful opportunity to revisit a broad range of debates about the nature of psychiatric classification, and of psychiatry
Feedback from patients and patient advocates played a useful role in influencing some of our subworkgroup recommendations for the DSM-5 section on obsessive-compulsive and related disorders
Given the complexity of defining psychiatric disorders and their boundaries [15,16], any particular approach to the nosology has both pros and cons [17], and reaching an optimal solution is enhanced by carefully considering a broad range of perspectives [18], including the views of patients and patient advocates [19]

Summary

Introduction

The current revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) provides a useful opportunity to revisit a broad range of debates about the nature of psychiatric classification, and of psychiatry. Patient advocates for trichotillomania and skin picking disorder were concerned that if these disorders were classified alongside obsessive-compulsive disorder, patients might receive inappropriate treatment In considering these viewpoints, our subworkgroup noted that there were both overlaps and distinctions between OCD and a range of other putative obsessivecompulsive and related disorders, and that this was the case in other DSM-5 chapters as well. Hundreds of patients and patient advocates commented that excoriation (skin picking) disorder and hoarding disorder should be included in the nomenclature Such feedback usefully complemented available scientific data in emphasizing the clinical importance and the clinical utility of these diagnostic entities. Feedback from patients and patient advocates played a useful role in influencing some of our subworkgroup recommendations for the DSM-5 section on obsessive-compulsive and related disorders This feedback complemented and, in some cases, reinforced the value of recommendations that were based on the scientific literature. This feedback was helpful in assisting our subworkgroup with making recommendations for which no scientific data were available on which to base a recommendation (such as the best name for trichotillomania)

Conclusion

Hyman SE

17. Stein DJ

24. Jaspers K