Abstract

BackgroundLynch syndrome, a hereditary cancer syndrome, predisposes women to colorectal, endometrial, and ovarian cancer. Current guidelines recommend that women with Lynch syndrome undergo risk-reducing gynecological surgery to reduce their chances of developing endometrial or ovarian cancer. Little is known about how women with Lynch syndrome perceive gynecological cancer screening, or the psychosocial factors associated with screening attitudes and behaviour.MethodsThis study used a cross-sectional, quantitative design. Using self-report questionnaire data from a sample of women with Lynch syndrome (N = 50) who had not undergone risk-reducing surgery, the current study sought to: 1) describe the gynecological cancer screening behaviours of women with Lynch syndrome, as well participant-reported sources of information about Lynch syndrome; 2) examine the extent to which women believe gynecological cancer screening is effective and provides them with reassurance and; 3) assess to what extent relationships with one’s family physician were associated with gynecological cancer screening, perceptions about screening, and health self-efficacy. Data were analyzed using descriptive statistics and Spearman rank-ordered correlations.ResultsData analyses showed that transvaginal ultrasound was the most common screening behaviour (57%) followed by pelvic ultrasound (47%). Only 22% of participants underwent endometrial biopsy. Patient-physician relationships were related to greater health self-efficacy to manage Lynch syndrome and greater perceived effectiveness of gynecological screening. However, health self-efficacy and better patient-physician relationships were not associated with increased engagement in gynecological cancer screening.ConclusionsThe data suggest that feeling efficacious about managing one’s Lynch syndrome and screening is related to positive interactions and communication with one’s family physician. While this is encouraging, future research should examine educating both family physicians and patients about current guidelines for Lynch syndrome gynecological screening recommendations.

Highlights

  • Lynch syndrome (LS), a hereditary cancer syndrome caused by pathogenic variants in the mismatch repair genes including MLH1, MSH2, MSH6, and PMS2 or by an EPCAM gene deletion [1, 2], predisposes women to many types of cancer including colorectal, endometrial, and ovarian cancer [3, 4]

  • Endorsement of better patient-physician relationships was related to greater health self-efficacy to manage LS and to greater perceived effectiveness of various gynecological cancer screening measures, such as the CA-125 blood test, pelvic ultrasound, and Transvaginal ultrasound (TVUS), and endometrial biopsy

  • The current findings suggest that enhancing the exchange of information about LS between patients and providers will be important to improving care for people living with LS

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Summary

Introduction

Lynch syndrome (LS), a hereditary cancer syndrome caused by pathogenic variants in the mismatch repair genes including MLH1, MSH2, MSH6, and PMS2 or by an EPCAM gene deletion [1, 2], predisposes women to many types of cancer including colorectal, endometrial, and ovarian cancer [3, 4]. The National Comprehensive Cancer Network (NCCN) guidelines suggest that women with LS consider surgery, such as prophylactic hysterectomy and/or oophorectomy to lower or eliminate their chances of endometrial or ovarian cancer [5]. Both procedures are associated with significant symptom burden including sexual dysfunction, early onset menopause, and body image issues [6,7,8]. Little is known about how women with Lynch syndrome perceive gynecological cancer screening, or the psychosocial factors associated with screening attitudes and behaviour

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