Mortality from surgical repair of tetralogy of Fallot (TOF) has decreased dramatically over the last several decades. Despite excellent surgical outcomes, studies reveal that patients with TOF continue to have decreased physical functioning, academic difficulties, and psychosocial impairments. We hypothesized that administering a validated quality-of-life assessment to patients with TOF during routine cardiology follow-up visits would help identify deficits and increase referrals to appropriate interventional programs. Between May 2017 and November 2018, TOF patients (5–20 years) and/or their families completed a standardized quality-of-life assessment (PedsQL 4.0) during cardiology clinic visits. Providers were encouraged to refer patients with abnormal PedsQL 4.0 scores to appropriate services including cardiovascular rehabilitation, psychological evaluation, neurodevelopmental testing, and school intervention. Referrals for the intervention group were compared to those of a control group using χ2 analysis. The PedsQL 4.0 was completed by 79 patients at 90 clinic visits. At least one abnormal PedsQL 4.0 score was identified in 58% (52/90) of patient encounters, and of those 52 encounters, 38% (20/52) received at least one referral for intervention. The most commonly placed referrals were for neurodevelopmental testing (16) and school intervention (11). When comparing the number of referrals from the intervention group to those of the control group, referrals to all intervention services were statistically significant (p < 0.05). Our quality improvement initiative successfully utilized a quality-of-life assessment to detect deficits and subsequently increased the number of referrals to intervention services. Future studies will address barriers that prevent completion of the PedsQL and assess how interventions impact quality-of-life scores.
Tetralogy of fallot Quality-of-life assessment Referrals Intervention PedsQL 4.0
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The authors would like to recognize Mary Krolikowski, clinical resource nurse at the Herma Heart Institute, for her contributions to this project.
Compliance with Ethical Standards
Conflict of interest
The authors have no confict of interest to disclose.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institution and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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