Transition and Transfer of Congenital Heart Disease Care From Pediatrics to Adulthood.
Transition and Transfer of Congenital Heart Disease Care From Pediatrics to Adulthood.
Adults with congenital heart disease (CHD) are a growing patient population in need of ongoing specialized care. Lapses in appropriate transition and transfer processes from childhood to adulthood in CHD care can lead to loss in follow up, late detection of new or evolving cardiac complications and negative patient outcomes. Therefore, it is vital that a robust transition and transfer process is established. Through a retrospective study completed recently at the University of Ottawa Heart Institute (UOHI) we have shown that the average wait time to be assessed by an adult congenital heart disease (ACHD) specialist is about 10 months and within this wait period 1 in 8 ACHD patients have a decline in their health.
The goal of this study is to specifically reduce negative patient outcomes during this wait period. We aim to achieve this by (i) establishing a program to ensure early detection of patients at risk of deterioration and (ii) providing additional support to these patients. The program is designed to have a multipronged approach including tools to disseminate concise patient specific information among care providers, maintain open line of communication with patients on the waitlist and promote patient education.
We plan to improve our transition care by creating a multi-pronged transfer program specifically for patients on the wait list composed of a nurse check in, creation of a diagnosis summary, education day and combined pediatric cardiology/ACHD handover videocall (described below). This program is planned as part of our care pathway and will be offered to all patients on the wait list. We intend to document the efficacy of this transition program to improve transition care by assessing patient reported outcomes and clinical outcomes of the patients who consent to complete additional questionnaires.
The multi-pronged program will include the following:
These four components of the program work together to provide tools to disseminate concise patient specific information among care providers, maintain open line of communication with patients on the waitlist and promote patient education.
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:
Individual component described below:
1) ACHD nurse check-in via phone or zoom will be completed within 1 month of receiving referral.
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:
1. 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.
2) 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
3) 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:
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):
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):
At time of first ACHD clinic appointment after completing wait list, the following variables will be collected:
From chart review (all patients):
From patient survey (in patients consenting to complete the 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:
Exclusion Criteria:
joajoseph@ottawaheart.ca613-261-9316