Standard set of patient-reported outcomes for personality disorder

• Published in: Quality of life research Vol. 30; no. 12; pp. 3485 - 3500
• Main Authors: Prevolnik Rupel, Valentina, Jagger, Beth, Fialho, Luz Sousa, Chadderton, Lisa-Marie, Gintner, Timea, Arntz, Anroud, Baltzersen, Åse-Line, Blazdell, Julia, van Busschbach, Jan, Cencelli, Marika, Chanen, Andrew, Delvaux, Charlotte, van Gorp, Fieke, Langford, Lucie, McKenna, Brian, Moran, Paul, Pacheco, Karla, Sharp, Carla, Wang, Wei, Wright, Karen, Crawford, Mike J.
• Format: Journal Article
• Language: English
• Published: Cham Springer International Publishing 01-12-2021; Springer Nature B.V
• Subjects: Consensus; Delphi Technique; Humans; Medicine; Medicine & Public Health; Mental health; Outcome Assessment, Health Care; Patient Reported Outcome Measures; Personality disorders; Personality Disorders - therapy; Public Health; Quality of Life - psychology; Quality of Life Research; Sociology; Working groups; ICHOM; Risk-adjustment variables; Patient-reported outcomes; Delphi procedure; Personality disorder; Quality of life
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-021-02870-w

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.