Barriers to access, and time to genetic testing in the Provincial Medical Genetics Program Newfoundland and Labrador

Dooley Adams, Kim (2022) Barriers to access, and time to genetic testing in the Provincial Medical Genetics Program Newfoundland and Labrador. Masters thesis, Memorial University of Newfoundland.

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Abstract

Objective: To determine the wait times for service for hereditary cancers and cardiac disease, as well as the barriers that exist that impact wait time. Background: Access to genetic testing and services is currently largely restricted for practitioners outside of the medical genetics specialty within Newfoundland and Labrador. The current practice may delay timely access to care that is required to diagnose and develop a plan of care. Methods: Data was extracted from 78 patient referrals received in the Provincial Medical Genetics Department (PMGP) from January 1 through December 31, 2013. Charts were evaluated to establish the timelines for access to services, with an examination of the timelines for each phase of the process. Semi-structured interviews with nine key stakeholders were completed to gain an understanding of their role in the patient pathway, as well as the expectation of the service. Results: There is a non-significant difference in the median wait time to receive service between cancer and cardiac referrals with a wait-time of 45.7 months (95% CI 41.8 – 49.5) for cancer versus 36.5 months (95% CI 22.7 – 50.3) for cardiac referrals. Of the 78 patients in the sample, 9 (12%) did not require an appointment but remained in the queue, and 11 (14%) were a “no show” or refused an appointment. The referral triage process did not impact time to receipt of services, with a median wait time of 43.6 months (95% CI, 38.9 – 51.3) for referrals that were triaged and 45.7 months (95% CI 40.9 – 50.4) for those not triaged. To assist with the triage process additional information was required for 33 of the 78 referrals, 17 (51.5%) patients returned this information, while 16 (48.5%) did not. Wait time for service was not impacted, as all referrals received an appointment. There was no significant difference in wait times between internal or external referrals, median wait time 45.7 months(95% CI, 38.2 – 53.1) for internal referrals, versus 44.1 months (95% CI, 36.9 – 51.3), however, referrals from families had a wait time of 3.4 months (95% CI, .18 – 6.6). Qualitative analysis of semi-structured interviews that were completed with nine health care providers suggests that the major barriers for access were the current referral process, prolonged wait times, lack of referral appropriateness knowledge, and the inability of the provider to order baseline genetic testing. Conclusion: Genetic counseling and treatment are complex processes. The current referral process is prolonged. Survey respondents indicate a low satisfaction, and frustration with the disjointed process. A streamlined standard process would enable the PMGP to better control the flow, to ensure time to access and service is decreased for the highest priority patients.

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