Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review

Figures

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  Fig. 1. Flowchart study-selection process. This figure displays the selection process of the articles selected for the review. Abbreviations used in Fig. 1, inherited cardiac conditions (ICC); presymptomatic carrier (pre-sympt); research question (RQ).

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  Fig. 2. Risk of Bias-summary. Note: This figure displays the sum of all risk of bias for each included study. Light gray = potential bias is low; middle gray = potential bias in this domain is unclear (plausible bias that raises some doubt about the results of this study); dark gray = potential bias is high (plausible bias that seriously weakens confidence in the results of this study). Attrition bias is only applicable in prospective studies (n = 3).

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  Fig. 3. PROMS/PREMS in cardiogenetics. This figure shows the percentage generic PROMs used (82%) and the disease-specific PROMs used (18%). a Generic PROMs: the MOS Short Form 36 (SF-36) or its briefer form, the SF-12. b Disease-specific: the Kansas City Cardiomyopathy Questionnaire (KCCQ); the Minnesota Living with Heart Failure Questionnaire (MLFHQ). In addition to PROMs, some studies used an unvalidated patient-reported measure (47%) together with generic PROM. PREM the patient satisfaction scale (PSS), the satisfaction with decision scale (SWD), the patient experience scale for HCM (PES HCM).

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  Fig. 4. Psychological surveys. This figure shows the additional psychological measures that studies used to measure psychological well-being. a Anxiety and depression surveys [blue color]:: Hospital Anxiety and Depression Score (HADS); Generalized Anxiety Disorder Scale (GAD-7); Patient Health Questionnaire (PHQ-9); b Impact scales [green color]: Impact of Event Scale (IES-15; IES-R); Cardiac Anxiety Questionnaire-18 (CAQ-18); The Illness Perception Questionnaire-revised (IPQ-R); c Adaptation scales [yellow color]:: The Bergen Genetic Counselling Self-Efficacy scale (BGCSE); Psychological adaptation to genetic information scale (PAGIS).