Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship.

Broughel, Erin M*; Hennig, Kelsey*; Chu, Rebecca*; Parker, Wendy M; Campo-Engelstein, Lisa; Burton-Chase, Allison M

Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship.

Issue Date

2020-01

Authors

Broughel, Erin M*

Hennig, Kelsey*

Chu, Rebecca*

Parker, Wendy M

Campo-Engelstein, Lisa

Burton-Chase, Allison M

Abstract

Lynch syndrome (LS) is a genetic cancer syndrome that puts affected individuals at a significantly higher risk of developing multiple cancers. Participants (n = 57) were recruited through social media. Data were collected through online surveys and phone interviews; the interview data (n = 55) were analyzed to identify provider terminations and the factors that motivated these decisions. Results indicate that individuals with LS terminated their patient-provider relationships due to lack of provider LS knowledge, poor interactions, or a combination of both factors. Findings from this study suggest a need for better interactions between LS patients and providers and increased knowledge of LS-specific care.

Citation

Broughel EM, Hennig K, Chu R, Parker WM, Campo-Engelstein L, Burton-Chase AM. Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship. J Patient Exp. 2021 Apr 13;8:23743735211008755. doi: 10.1177/23743735211008755. PMID: 34179439; PMCID: PMC8205383.