Factors Associated With Lack of Long-Term Follow-Up Data After Global Cardiac Surgery Missions.

Background: Humanitarian medical missions attempt to lessen the burden of limited access to cardiac surgery in low- and middle-income countries. While organizations express difficulties obtaining follow-up information, there is currently little evidence to support the various assumptions for lack of data. This study examines the factors influencing long-term patient follow-ups on repeated short-term cardiac surgery missions across nine countries. Methods: A retrospective analysis of CardioStart International's database (RedCap) was conducted to investigate demographic, socioeconomic, and surgical factors associated with follow-ups. Results: A total of 550 pediatric (50%) and adult (50%) cardiac surgery patients displayed a follow-up rate of 14.7%, with no significant difference between populations (P = 1). Mean follow-up time was 1.5 years postoperative. Countries were highly variable, with Dominican Republic and Vietnam showing follow-up rates of 30.4% and 43.2%, respectively, while Brazil, Nepal, and Tanzania had no follow-ups (P < 0.0001). The 11 surrogate factors for socioeconomic status, including home amenities and technology access, were predominantly insignificant, with the exception of phone access showing an unexpectedly decreased follow-up rate (11.6%, P = 0.006). Surgical intervention was a significant factor (P = 0.009). No adult cardiac surgery trends were noted; however, congenital cases demonstrated increased follow-ups in patients with higher Risk Adjusted Congenital Heart Surgery scores, with ventricular septal defects (32.5%) exceeding atrial septal defects (7.3%). Conclusions: Follow-ups correlate with mission factors, including location and types of intervention, more so than previously assumed socioeconomic and technological factors. Thus, certain missions may require more allocation of resources and adapted organizational policies to overcome site-specific barriers to follow-up.

Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries.

BACKGROUND: Little is known about emotional quality-of-life in paediatric heart disease in low- and middle-income countries where the prevalence of uncorrected lesions is high. Research on emotional quality-of-life and its predictors in these settings is key to planning interventions. METHODS: Ten-year retrospective cross-sectional study of children aged 6-17 years with uncorrected congenital or acquired heart disease in 12 low- and middle-income countries was conducted. Emotional functioning score of the PedsQL TM 4.0 generic core scale and data on patient-reported limitation in sports participation were collected via in-person interview and analysed using regression analyses. RESULTS: Ninety-four children reported mean emotional functioning scores of 71.94 (SD 25.32) [95% CI 66.75-77.13] with lower scores independently associated with having a parent with a chronic illness or who had died (p = 0.005), having less than three siblings (p = 0.007), and reporting a subjective limitation in carrying an item equivalent to a 4 lb load (p = 0.021). Patient-reported limitation in sports participation at least "sometimes" was present in 69% and was independently associated with experiencing symptoms at least once a month (p < 0.001). CONCLUSION: Some of the factors which were associated with better emotional quality-of-life were similar to those identified in previous studies in patients with corrected defects. Patient-reported limitation in sports participation is common. In addition to corrective surgery and exercise, numerous other interventions which are practicable during surgical missions might improve emotional quality-of-life.