Advance care planning in adults with congenital heart disease is most frequently triggered during routine follow-up (71%), with intervention and disease progression also common triggers.
There is a wide variety of proposed triggers and a lack of consensus criteria for initiating advance care planning in adults with congenital heart disease.
Absolute Event Rate: 0% vs 0%
Abstract Background Adult patients with congenital heart disease (CHD) are at increased risk of premature morbidity and mortality. Advance care planning (ACP) is an underused resource to provide longitudinal comprehensive and patient-centered care in adults with CHD. Barriers to initiate ACP include, amongst others, the uncertainty when to initiate such talks and the fear of causing unnecessary emotional distress to patients. Criteria to initiate such discussions are not well defined. Purpose The aim of this study was to perform a systematic literature review to identify previously proposed triggers to initiate ACP in adults with CHD. Methods MEDLINE, Embase, PsycInfo, CINAHL, Web of Science, Scopus and the Cochrane Library were searched from the inception of the database to July 26, 2024. The core concepts of the search strategy consisted of 1) Adult CHD, and 2) Advance care planning or palliative care. Three investigators independently reviewed each report for inclusion and then extracted potential trigger criteria for initiation of ACP talks. Potential trigger criteria were categorized thematically as time-based, need-based, disease-based or prognosis-related. Results Of 4257 articles screened, 21 were included for data extraction. The majority of articles (66%) were published between 2019-2023, and in cardiology journals (86%). ACP was recommended to be offered to adult CHD patients during routine follow-up in 15 articles (71% of all articles), independent of defect complexity or underlying functional status. Specific interventions were the second most frequently cited trigger criteria (11 articles, 52%), followed by signs of disease progression (9 articles, 43%) and defect-specific triggers (7 articles, 33%). Symptom- and patient-based triggers were reported less frequently. For details see table 1. Conclusion The results of this systematic review highlight the variety of triggers and lack of consensus criteria to initiate ACP in adults with CHD. Further research is needed to identify appropriate and timely trigger criteria.Table 1 Table 1 cont
Possner et al. (Sat,) reported a other. Advance care planning in adults with congenital heart disease is most frequently triggered during routine follow-up (71%), with intervention and disease progression also common triggers.