Transition and Transfer of Congenital Heart Disease Care From Pediatrics to Adulthood

This is a prospective quality improvement study, investigating the effectiveness of a structured multi-pronged transfer program on clinical outcomes and patient-reported outcomes. This program is planned as part of our care pathway and will be offered to all patients on the wait list. Charts of all patients enrolled in this transfer program will be reviewed to assess clinical outcomes. Further voluntary study participation will include an additional survey to assess patient reported outcomes. The patients willing to complete the survey will be consented verbally by the ACHD nurse. The surveys then will be delivered by the nurse using phone or zoom platform to those consenting to participate. Data collection from chart review and surveys will be performed by a research coordinator (KM).

There are 4 components of the transfer program. Groups of patients will be staggered so that the first 50 patients receive 1+2, next 50 patients receive 1+2+3 and the rest of the patients receive 1+2+3+4 as listed below:

• ACHD nurse check-in
• Quick glance diagnosis summary
• ACHD patient education day
• Combined pediatric cardiology and ACHD handover video call at time of transfer

Individual component described below:

• ACHD nurse check-in via phone or zoom will be completed within 1 month of receiving referral.

• Patients referred from CHEO and community will be called by the ACHD nurse within 1 month of receiving the referral as part of the ACHD nurse check-in.
• ACHD nurse check-in template will be uploaded to patient chart on Epic. It will include the following (details attached as a separate document):

i. Access to family physician. ii. Assess patient's knowledge on their cardiac condition. iii. Patient' social circumstance. iv. Patient's dental health. v. Patient's lifestyle habits. vi. Any active cardiac symptoms. vii. Need to expedite ACHD cardiologist appointment. If patient meets any of the following criteria, then patient will be flagged as needing expedited cardiologist appointment:

• Worsening arrhythmias (i.e. new or more frequent/intense symptomatic palpitations or new sustained arrythmias) 2. Decreasing exercise intolerance 3. Change in NYHA class 4. Syncope 5. Exercise induced chest pain 6. Peripheral edema or unexplained weight gain viii. Gage interest in patient education day. c. The nurse will also complete the quick glance diagnosis summary for the patient during this check in which is outlined below.

d. Initial assessment of patient reported outcomes (PROs) will be completed in the form of an additional survey for the patients who consent to participate.

• Quick glance diagnosis summary will be completed and provided to the patient.

• This will be completed by the ACHD nurse at the time of the ACHD nurse check in (within 1 month of receiving the referral).
• This will be created electronically on the patient's Epic chart under letter/ communications section, which can also be accessed by the patients via their MyChart.
• The content will be reviewed by ACHD specialist to ensure accuracy.
• The components of the quick glance diagnosis summary have been reviewed by our patient partner and deemed helpful.
• The quick glance diagnosis summary will include (details attached as a separate document):

• Patient name
• Date of birth
• Name of ACHD cardiologist
• Congenital heart disease diagnosis
• Main surgical/ percutaneous intervention
• Cardiac device
• Previous infective endocarditis/ need for endocarditis prophylaxis.
• Exercise restriction
• Need for bubble filters on intravenous lines
• Anti-coagulation
• Contraception
• Alarm symptoms to monitor
• Recommended vaccines
• Contact information for ACHD clinic

• Organization of patient education day for all patients on the waitlist. This is a half day event. Ideally this event will occur every 6 months and would include both patients referred from CHEO as well as the community. Participation will be documented.
• The education day will include:

• Formal introduction to ACHD team including nurses and physicians
• Tour of UOHI facility including clinic/ echo lab
• Education session emphasizing need for lifelong follow-up, regular exercise, monitoring of alarm symptoms. Session facilitated by dietitian, social worker, psychologist, physiotherapist
• Networking
• Option for in-person and virtual component 4) Combined Pediatric cardiology and ACHD handover video calls.
• Allows effective and efficient handover of patient care from pediatric to adult care team.
• Will occur after the patient's last pediatric cardiology appointment. This component of the transfer program cannot be offered to patients referred from the community.

Variables to be collected:

Within the first month of being on the ACHD waitlist the following will be completed for all patients (whether or not consenting to participate in the voluntary survey):

• Electronic Quick glance diagnosis summary created on Epic MyChart (described above)
• ACHD nurse check via phone and documented on Epic (described above)

During the 1 month ACHD nurse check in, the following information will be collected in the form of a survey (in addition to the standard ACHD nurse check in template) only from those consenting to participate (details attached separately):

• Age/ date of birth (mm/yyyy)
• Sex/gender
• Ethnicity/ race
• Socioeconomic status (student/ employed/ unemployed)
• Access to family physician
• Knowledge assessment related to CHD
• Initial patient reported outcomes (PROS):

• Quality-of-life score on linear analog scale9 during the waiting period
• Patient Health Questionnaire (PHQ9) score10,11 for depression
• General Anxiety Disorder (GAD-7) score12,13 for anxiety
• Satisfaction with life survey score14

At time of first ACHD clinic appointment after completing wait list, the following variables will be collected:

• From chart review (all patients):

• Duration on wait list
• Date of first ACHD clinic appointment
• Number of non-planned ED visits during the wait period
• Number of unexpected hospital admissions during the wait period
• Number of family physician visits related to CHD during the wait period
• Number of urgent interventions planned.
• From patient survey (in patients consenting to complete the surveys)

• Assessment of emotional distress related to wait period
• Knowledge assessment related to CHD
• Repeat patient reported outcomes (PROS) collected in the form of surveys:
• Quality-of-life score on linear analog scale9 during the waiting period
• Patient Health Questionnaire (PHQ9) score10,11 for depression
• General Anxiety Disorder (GAD-7) score12,13 for anxiety
• Satisfaction with life survey score14

Inclusion criteria

• All new patients with congenital heart disease referred from the pediatric hospital and the community

Exclusion criteria

• None