ArticleHeart rhythm O22025
Unmet health-related needs of heritable arrhythmogenic cardiomyopathy carriers in Belgium: The UR-HEART survey study.
Article in Heart rhythm O2, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: The revised European Pharmaceutical Legislation emphasizes research and development for unmet medical needs. While gene therapies for arrhythmogenic cardiomyopathies (ACM) are advancing, insight into patients' lived experiences remains limited. Objective: This study identifies the unmet health-related needs of ACM carriers to guide policy, research, care, and treatment strategies. Methods: A cross-sectional survey was conducted among ACM carriers in Belgium using convenience sampling. The Needs Examination, Evaluation, and Dissemination (NEED) framework guided the development of a multilingual (Dutch, French, English) questionnaire assessing health-, health care- and social needs among symptomatic (S) and asymptomatic (A) carriers. Data were collected anonymously via Lime Survey or post. Descriptive and Wilcoxon signed-rank tests were conducted. Results: Of 112 participants (63 women, 49 men), most were over 40 years old (80%) and symptomatic (67%). Symptomatic carriers reported pain/discomfort (58%), daily activities limitations (51%), and anxiety/depression (49%), whereas asymptomatic carriers experienced anxiety/depression (30%). Despite high treatment satisfaction, half of participants found treatment burdensome, due to side effects (46%) and ongoing need to manage the condition (39%). Dissatisfaction centered on restrictions on competitive sports. Participants faced challenges with hobbies (S: 59%, A: 22%), reduced work intensity (S: 49%, A:19%), and financial consequences (S: 51%, A: 14%). Diagnostic delay of over 1 year persist (26%). Nearly half (45%) fulfilled their family planning before diagnosis, limiting informed reproductive choices. Moreover, 60% did not always receive useful information. Conclusion: Unmet needs among ACM carriers remain, particularly regarding delayed diagnosis, treatment burden, psychological stress, reproductive decisions, and access to information. Future care and research should address these gaps to improve ACM carriers' quality of life.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.