Self-Reported Mental and Physical Measures in Adult Fontan Patients

Nili Schamroth Pravda, Oren Zusman, Ilan Richter, Leonard Blieden, Shahar Vig, Ilan Marchushamer, Alexander Dadashev, Yaron Razon, Ran Kornowski, Rafael Hirsch

Research output: Contribution to journalArticlepeer-review


Introduction: The Fontan procedure is a palliative operation for patients with single functional ventricles, arising from a heterogeneous group of heart defects. There is a considerable gap in evidence regarding the self-reported physical and mental health of these patients surviving to adulthood. Methods and Results: We administered the PROMIS® Global Short Form (v 1.2) to Fontan patients during their scheduled clinic visits during 2017–2018. The raw PROMIS scores were subsequently converted to standardized T-scores, where the mean performance was 50 for the general population. We used Cronbach’s alpha to assess reliability, with >0.8 considered good. A total of 42 patients were included. The median age was 30 (IQR: 24–34) years and 59% (95% CI: 43–74%) were female. The median time from birth to operation was 4.5 (IQR: 3–8) years, with 55% having an extracardiac Fontan. The questionnaire had good internal reliability with an alpha of 0.87. Seventyone percent of respondents rated their overall health as “excellent” or “good”. The mean T-score for physical health was 46.6, lower than the age-group mean (51.6, p < 0.001). The mean T-score for mental health was 53.3, higher than the age-group mean (48.5, p < 0.001). T-scores showed strong correlation with each other (r = 0.7) and weak correlation with age and time from procedure. There was no association of T-score with diagnosis or operation type. Conclusions: Adult Fontan patients report better mental health despite worse reporting physical health compared with the age group means. Patient-reported measures can provide clinically meaningful insights about the care of patients with complex congenital heart disease.

Original languageEnglish
Article number3969
JournalJournal of Clinical Medicine
Issue number14
StatePublished - 1 Jul 2022
Externally publishedYes


  • adult congenital heart disease
  • Fontan
  • patient-reported outcomes


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