Standard set of patient‐reported outcomes for personality disorder

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Abstract

Purpose
The purpose of the article is to present standard set of outcomes for people with personality disorder (PD), in order to facilitate patient outcome measurement worldwide.

Methods
The International Consortium for Health Outcomes Measurement (ICHOM) gathered a multidisciplinary international working group, consisting of 16 experts, including clinicians, nurses, psychologists, methodologists and patient representatives, to develop a standard set of outcome measures for people with PD. The Delphi method was used to reach consensus on the scope of the set, outcome domains, outcome measures, case-mix variables and time points for measuring outcomes in service users. For each phase, a project team prepared materials based on systematic literature reviews and consultations with experts.

Results
The working group decided to include PD, as defined by International Classification of Diseases 11th revision (ICD-11). Eleven core outcomes and three optional outcomes across four health domains (mental health, behaviour, functioning and recovery) were defined as those relevant for people with PD. Validated measures for the selected outcomes were selected, some covering more than one outcome. Case-mix variables were aligned to other ICHOM mental health standard sets and consisted of demographic factors and those related to the treatment that people received. The group recommended that most outcomes are measured at baseline and annually.

Conclusion
The international minimum standard set of outcomes has the potential to improve clinical decision making through systematic measurement and comparability. This will be key in improving the standard of health care for people with PD across the world.
Original languageEnglish
Number of pages17
JournalQuality of Life Research
Volume(2021)
Early online date2 Jun 2021
DOIs
Publication statusPublished - 2 Jun 2021

Bibliographical note

Funding Information:
We would like to thank all external stakeholders for the time and effort contributed without financial compensation. We also extend our gratitude to Doctor Alireza Farnam and Professor Martin Bohus, who contributed to working group discussions. This work represents the views of the working group members; no representation of the views of their respective institutions is implied. Paul Moran is supported by the NIHR Biomedical Research Centre at University Hospitals Bristol and Weston NHS Foundation Trust and the University of Bristol.

Funding Information:
Anroud Arntz, Julia Blazdell, Lisa-Marie Chadderton, Charlotte Delvaux, Timea Gintner, Beth Jagger, Lucie Langford, Brian McKenna, Karla Patricia Pacheco Alvarado, Carla Sharp, Luz Sousa Fialho, Fieke van Gorp and Karen M. Wright declare no conflict of interest. Åse-Line Baltzersen works as Communication advisor for The Norwegian National Advisory Unit on Personality Psychiatry. Marika Cencelli works for Mental Health Policy and Strategy, NHS England and NHS Improvement. Andrew Chanen received grants from National Health and Medical Research Council and Australian Research Council, is a Director of Clinical Programs and Services, Orygen, Melbourne, Australia, Professorial Fellow, Centre for Youth Mental Health, The University of Melbourne and Board member of National Education Alliance for Borderline Personality Disorder (NEABPD) Australia. Mike Crawford received professional fees from Central & North West London HHS Foundation Trust and grant from National Institute for Health Research and the Department of Health on behalf of Imperial College London; is a Professor of Mental Health Research, Imperial College London, Director of the College Centre for Quality Improvement at the Royal College of Psychiatrists and Trustee of the Maytree (a charity providing support for people in a suicidal crisis). Paul Moran received grants from the National Institute for Health Research and the Department of Health; The Above & Beyond Charity. Valentina Prevolnik Rupel and Jan van Busschbach are members of EuroQol Group. Wei Wang received grant from Zhejiang University and Natural Science Foundation of China.

Publisher Copyright:
© 2021, The Author(s).

Keywords

  • ICHOM
  • Patient-reported outcomes
  • Personality disorder
  • Quality of life
  • Risk-adjustment variables
  • Delphi procedure

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