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

Patient-reported outcome measures (PROMs) are used to facilitate patient-centered care (PCC). While studies in patients with cardiac conditions have revealed poorer health-related quality of life (HRQoL) and elevated emotional stress, studies in inherited cardiac conditions (ICC) seem rare. A systematic review evaluated which (specific domains of) PROMs are used in patients with ICC. From three databases (PubMed, PsychINFO, and Web of Science) quantitative studies investigating PROMs in patients with ICC were included. A Cochrane-based assessment tool was used to evaluate quality and potential risk of bias per subdomain. Data from 17 eligible articles were extracted. Among the included studies, risk of bias was predominantly high (35%) or unclear (30%). Most (n = 14) studies used a generic health status measure (SF-36, SF-12); 3 studies used a disease-specific PROM (KCCQ- cardiomyopathy and MLFHQ-heart failure). In addition to HRQoL measures, several studies used affective psychological measures (i.e., HADS, CAQ-18, IES-R, and IPQ). The mental health component of the PROMs showed lower scores overall in patients with ICC compared to population norms. Nine studies using HADS and GAD-7/PHQ-9 showed a prevalence of clinically significant anxiety (17-47%) and depression levels (8.3-28%) that were higher than the population norm (8.3% and 6.3%, respectively). HRQoL in patients with ICC is primarily assessed with generic PROMs. Results further confirmed high psychological morbidity in this population. Generic PROMS measures evaluate overall health status, but lack sensitivity to ICC-specific factors like heredity-related concerns. We propose developing a PROM specific for ICC to optimize PCC.

Barriers and facilitators for the implementation of patient-centered care in cardiogenetics: a Delphi study among ERN GUARD-heart members.

Current clinical practice regarding inherited cardiac conditions has a biomedical focus, while psychological and social expertize and capacity are often lacking. As patient-centered care entails a multidisciplinary approach, the present study (a) explores barriers and facilitators of implementing patient-centered care in cardiogenetics and (b) contrasts various stakeholder viewpoints and perceived influence. We performed a three-round modified Delphi study using the input of a virtual expert panel comprising 25 medical professionals, 9 psychosocial professionals working in cardiogenetics, and 6 patient representatives. In round 1, the brainstorming phase and workshop breakout sessions were transcribed verbatim, coded and processed into unique statements listed as barriers and facilitators. In round 2, we asked the expert panel to validate, add or revise the list of barriers and facilitators. In round 3, the most relevant barriers and facilitators were ranked in importance. The experts identified 6 barriers dispersed across various levels of implementation. Having a blind spot for the patient perspective was of the highest importance, while the lack of multidisciplinary communication was ranked the lowest. We selected 9 facilitators: 2 were workflow related, 5 advocated various aspects of increased multidisciplinarity, and 2 suggested improvements in patient communication. This study revealed health system and organizational barriers and facilitators predominantly in implementing patient-centered care and only some patient-level factors. Some barriers and facilitators may be addressed easily (e.g., improving communication), while others may prove more complicated (e.g., biomedical thinking). Close interdisciplinary collaboration seems to be needed to implement PCC in cardiogenetics successfully.