Patient-reported outcome measures: are they patient-generated, patient-centred or patient-valued? 2013

Joan Trujols, and Maria J Portella, and Ioseba Iraurgi, and M Josefa Campins, and Núria Siñol, and José Pérez de Los Cobos
Unitat de Conductes Addictives, Servei de Psiquiatria, Hospital de la Santa Creu i Sant Pau , Institut d'Investigació Biomèdica Sant Pau (IIB Sant Pau) , Barcelona , Spain.

BACKGROUND In the past two decades, there has been a growing interest in the development of a more patient-centred approach to assessing treatment outcomes. This interest has resulted in the increasing use of patient-reported outcome measures (PROMs) in both clinical trials and usual clinical practice. OBJECTIVE To briefly discuss the paucity of efficacy and effectiveness studies in the field of mental health (exemplified by schizophrenia, depression and opioid dependence) that significantly incorporate the patient's perspective. The limited concordance between the perspectives of patients and clinicians in outcome assessment is also addressed. Finally, we propose a new PROM classification system based on the degree to which these instruments incorporate the patient's perspective. CONCLUSIONS PROMs may differ little from traditional instruments unless they truly incorporate the patient's perspective and not just the perspectives of clinicians and researchers. Efforts to develop new PROMs that provide a more patient-centred outcome assessment should use qualitative and participatory methods to capture and incorporate patient perspectives and values.

UI MeSH Term Description Entries
D003866 Depressive Disorder An affective disorder manifested by either a dysphoric mood or loss of interest or pleasure in usual activities. The mood disturbance is prominent and relatively persistent. Depression, Endogenous,Depression, Neurotic,Depression, Unipolar,Depressive Syndrome,Melancholia,Neurosis, Depressive,Unipolar Depression,Depressions, Endogenous,Depressions, Neurotic,Depressions, Unipolar,Depressive Disorders,Depressive Neuroses,Depressive Neurosis,Depressive Syndromes,Disorder, Depressive,Disorders, Depressive,Endogenous Depression,Endogenous Depressions,Melancholias,Neuroses, Depressive,Neurotic Depression,Neurotic Depressions,Syndrome, Depressive,Syndromes, Depressive,Unipolar Depressions
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D001523 Mental Disorders Psychiatric illness or diseases manifested by breakdowns in the adaptational process expressed primarily as abnormalities of thought, feeling, and behavior producing either distress or impairment of function. Mental Illness,Psychiatric Diseases,Psychiatric Disorders,Psychiatric Illness,Behavior Disorders,Diagnosis, Psychiatric,Mental Disorders, Severe,Psychiatric Diagnosis,Illness, Mental,Mental Disorder,Mental Disorder, Severe,Mental Illnesses,Psychiatric Disease,Psychiatric Disorder,Psychiatric Illnesses,Severe Mental Disorder,Severe Mental Disorders
D012559 Schizophrenia A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, HALLUCINATIONS, emotional disharmony, and regressive behavior. Dementia Praecox,Schizophrenic Disorders,Disorder, Schizophrenic,Disorders, Schizophrenic,Schizophrenias,Schizophrenic Disorder
D016896 Treatment Outcome Evaluation undertaken to assess the results or consequences of management and procedures used in combating disease in order to determine the efficacy, effectiveness, safety, and practicability of these interventions in individual cases or series. Rehabilitation Outcome,Treatment Effectiveness,Clinical Effectiveness,Clinical Efficacy,Patient-Relevant Outcome,Treatment Efficacy,Effectiveness, Clinical,Effectiveness, Treatment,Efficacy, Clinical,Efficacy, Treatment,Outcome, Patient-Relevant,Outcome, Rehabilitation,Outcome, Treatment,Outcomes, Patient-Relevant,Patient Relevant Outcome,Patient-Relevant Outcomes
D019966 Substance-Related Disorders Disorders related to substance use or abuse. Chemical Dependence,Drug Abuse,Drug Addiction,Drug Dependence,Drug Habituation,Drug Use Disorder,Drug Use Disorders,Organic Mental Disorders, Substance-Induced,Substance Abuse,Substance Dependence,Substance Related Disorder,Substance Use,Substance Use Disorder,Substance Use Disorders,Prescription Drug Abuse,Substance Addiction,Abuse, Drug,Abuse, Prescription Drug,Abuse, Substance,Addiction, Drug,Addiction, Substance,Chemical Dependences,Dependence, Chemical,Dependence, Drug,Dependence, Substance,Dependences, Chemical,Disorder, Drug Use,Disorder, Substance Related,Disorder, Substance Use,Disorders, Substance Related,Drug Abuse, Prescription,Habituation, Drug,Organic Mental Disorders, Substance Induced,Related Disorder, Substance,Related Disorders, Substance,Substance Abuses,Substance Uses,Use, Substance
D063868 Patient Outcome Assessment Patient-generated evaluation data of treatment outcome or interaction in healthcare environment. Assessment, Patient Outcome,Assessment, Patient Outcomes,Outcome Assessment, Patient,Outcomes Assessments, Patient,Patient-Centered Outcomes Research,Assessments, Patient Outcome,Outcome Assessments, Patient,Patient Centered Outcomes Research,Patient Outcome Assessments,Patient Outcomes Assessment,Research, Patient-Centered Outcomes

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