Developing an International Standard Set of Patient-Reported Outcome Measures for Psychotic Disorders

McKenzie, Emily; Matkin, Lucy; Fialho, Luz Sousa; Emelurumonye, Ifeoma Nneka; Gintner, Timea; Ilesanmi, Christiana; Jagger, Beth; Quinney, Shannon; Anderson, Elizabeth; Baandrup, Lone; Bakhshy, Amrit Kumar; Brabban, Alison; Coombs, Tim; Correll, Christoph U.; Cupitt, Caroline; Keetharuth, Anju Devianee; Lima, Dania Nimbe; McCrone, Paul; Moller, Mary D.; Mulder, Cornelis L.; Roe, David; Sara, Grant; Shokraneh, Farhad; Sin, Jacqueline; Woodberry, Kristen A.; Addington, Donald

doi:10.1176/appi.ps.202000888

Cited by 22 publications

(11 citation statements)

References 62 publications

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“…The rating scales were developed based on research determined conceptualization of the negative symptom domain into anhedonia, asociality, alogia, and blunted affect 44 . Another possible alternative or supplement to the PANSS is the inclusion of relevant patient‐reported outcome measures (PROMs), that is, as recommend in the ICHOM (International Consortium for Health Outcomes Measurement) standard set for psychotic disorders 45 . PROMs are increasingly being used in addition to clinician‐rated outcome measures and are requested by a range of stakeholders but have not yet gained importance as choice of primary outcome in most schizophrenia trials.…”

Section: Discussionmentioning

confidence: 99%

“…44 Another possible alternative or supplement to the PANSS is the inclusion of relevant patient-reported outcome measures (PROMs), that is, as recommend in the ICHOM (International Consortium for Health Outcomes Measurement) standard set for psychotic disorders. 45 PROMs are increasingly being used in addition to clinician-rated outcome measures and are requested by a range of stakeholders but have not yet gained importance as choice of primary outcome in most schizophrenia trials. A review of psychometric properties of other established clinician-rated schizophrenia symptom rating scales like the Scale for Assessment of Positive Symptoms (SAPS)/the Scale for Assessment of Negative Symptoms (SANS) is beyond the scope of this article, but evaluation has focused on factor analyses 46 with few published analyses based on IRT.…”

Section: Implications For Clinical Practice and Future Researchmentioning

confidence: 99%

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Scalability of the Positive and Negative Syndrome Scale in first‐episode schizophrenia assessed by Rasch models

Baandrup

Allerup

Nielsen

et al. 2022

Acta Psychiatr Scand

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Objective Historically, assessment of the psychometric properties of the Positive and Negative Syndrome Scale (PANSS) has had several foci: (1) calculation of reliability indexes, (2) extraction of subdimensions from the scale, and (3) assessment of the validity of the total score. In this study, we aimed to examine the scalability and to assess the clinical performance of the 30‐item PANSS total score as well as the scalability of a shorter version (PANSS‐6) of the scale. Methods A composite data set of 1073 patients with first‐episode schizophrenia or schizophrenia spectrum disorder was subjected to Rasch analysis of PANSS data from baseline and 4–6 weeks follow‐up. Results The central tests of fit of the Rasch model failed to satisfy the statistical requirements behind item homogeneity for the PANSS‐30 as well as the PANSS‐6 total score. For the PANSS‐30, Differential Item Functioning was pronounced both for the 7‐point Likert scale rating categories and when dichotomizing the rating categories. Subsequently, the Rasch structure analysis in the context of dichotomized items was used to isolate and estimate a systematic error because of item inhomogeneity, as well as a random error. The size of the combined sources of error for the PANSS‐30 total score approximated 20% which is often regarded as clinical cut‐off between response versus no‐response. Conclusion The results demonstrate the operational consequences of a lack of statistical fit of the Rasch model and suggest that the calculated measure of uncertainty needs to be considered when using the PANSS‐30 total score.

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Section: Discussionmentioning

confidence: 99%

Section: Implications For Clinical Practice and Future Researchmentioning

confidence: 99%

Scalability of the Positive and Negative Syndrome Scale in first‐episode schizophrenia assessed by Rasch models

Baandrup

Allerup

Nielsen

et al. 2022

Acta Psychiatr Scand

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“…Research is needed to demonstrate a link between fidelity and outcomes. This could be done with large‐scale collection of risk adjusted outcome measures such as the recently published Patient Reported Outcome Measures for Psychosis (McKenzie et al, 2021). Direct comparisons with fidelity measures such as Early Psychosis Prevention and Intervention Centre Model Integrity Tool and the Danish Specialized Early Intervention Fidelity Scale would allow international comparisons of fidelity (Melau et al, 2018; Williams et al, 2021).…”

Section: Discussionmentioning

confidence: 99%

A comparison of the National Clinical Audit of Psychosis 2019/2020 standards and First Episode Psychosis Services Fidelity Scale 1.0

Addington

French

Smith

2021

Early Intervention Psych

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Aim The authors compare two approaches to assessment of the quality of early psychosis intervention services, the National Clinical Audit of Psychosis used in the United Kingdom and the First Episode Psychosis Services Fidelity Scale used in North America and Europe. Methods We compare the two approaches on the source of standards, measurement type, data collection, time requirements, scoring and reliability. Finally, we review their strengths and limitations. Results Both measures are based on standards derived from the same research evidence base. Both methods rely on data from health records and administrative data. The audit is supplemented with user survey data, the fidelity scale with clinician interviews. The audit requires more time. The audit is based on quality indicators rated as present or absent which yields a statistical benchmark. The Fidelity Scale is based on quality indicators that are rated on a five‐point scale yielding a standards‐based measure. The two methods cover similar service components, but the FEPS‐FS has a broader coverage of team functioning. The National audit also collects data on the user experience directly from patients. The fidelity scale has achieved good to excellent inter‐rater reliability, the reliability of the audit has not been tested. Conclusions Both methods have face validity and provide reliable and useful measures of quality of care. The NCAP works in the context of a single provider health system, the FEPS‐FS works in a more variable health system. Comparing the two systems in the field would support international comparison of standards of care.

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“…The variations and gaps in the data limit the ability to identify the best practices, guide quality improvement initiatives, and ability to compare various clinical care models [ 18 ]. Despite recent initiatives for global harmonization, there remains a lack of consensus as to which PROMs are best practice and appropriate [ 19 ]. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them.…”

Section: Introductionmentioning

confidence: 99%

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study

Bajgain,

Mendoza,

Naqvi

et al. 2024

J Patient Rep Outcomes

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Background In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them. This study aimed to prioritize PROMs by youth and family/caregiver based on feasibility, relevance, and overall importance to be used in the clinical care of youth living with anxiety and/or depression. Methods Ten validated and widely used PROMs were presented to the patients and family/caregivers. Nominal group techniques were employed to prioritize the PROMs based on feasibility, relevance, and overall importance. Results For patients and families/caregivers, the PROMs, Revised Child Anxiety and Depression Scale (RCAD 25), and The Young Person’s Core (YP-CORE) were the highest priorities. Both felt that RCAD 25 was comprehensive, short, easy, and quick to complete, whereas regarding YP-CORE, patients and family/caregivers thought it was also short and relevant. Due to some specific concerns, the Strength and Difficulties Questionnaire and Child Health Questionnaire were the lowest prioritized by patients and family/caregivers. Conclusion It is of utmost importance that patient’s and family/caregivers’ voices or opinions are considered while selecting and implementing PROMs in mental health settings. Our study provides practical recommendations around measures best suited to achieve this.

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Developing an International Standard Set of Patient-Reported Outcome Measures for Psychotic Disorders

Abstract: This is a repository copy of Developing an international standard set of patient-reported outcome measures for psychotic disorders.

Cited by 22 publications

References 62 publications

Scalability of the Positive and Negative Syndrome Scale in first‐episode schizophrenia assessed by Rasch models

Scalability of the Positive and Negative Syndrome Scale in first‐episode schizophrenia assessed by Rasch models

A comparison of the National Clinical Audit of Psychosis 2019/2020 standards and First Episode Psychosis Services Fidelity Scale 1.0

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study

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