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Journal of Genetic Counseling

, Volume 22, Issue 1, pp 125–137 | Cite as

A Mobile Colonoscopic Unit for Lynch Syndrome: Trends in Surveillance Uptake and Patient Experiences of Screening in a Developing Country

  • Zandrè BruwerEmail author
  • Merle Futter
  • Raj Ramesar
Original Research

Abstract

The Genetic and Endoscopic Surveillance Clinic is an annual outreach service offering accessible colonoscopic surveillance to known families with Lynch syndrome living in remote areas of the Western and Northern Cape Province of South Africa. Unfortunately attendance at this outreach clinic has been declining over several years and fewer than a quarter of participants, attending for surveillance, have been adherent with all their recommended screening appointments. Concerns exist for non-adherent individuals as screening can prevent colorectal cancer by removing the precancerous lesion or enabling the treatment of a malignancy at an early stage. This study explored the experience of surveillance from both the non-adherers’ and adherers’ perspectives and identified unique factors affecting attendance at the outreach clinic. Rates of compliance are calculated for 191 mutation-positive cases of Lynch syndrome, using strict attendance criteria, and compared to figures obtained from self-reported attendance. Non-compliance was under-reported and compliance was exaggerated when basing data on self-reported adherence to recommendations. Specific characteristics of the outreach clinic affecting compliance are identified and recommendations are made to facilitate improvements to the service. These improvements can result in increased compliance with screening regimens and ultimately reduce cancer-related mortality.

Keywords

Genetic counselling Lynch syndrome Surveillance Experience Qualitative research Developing country 

Notes

Acknowledgments

We are grateful to all the participants who took part in this research, especially for their willingness to share their experiences and for their openness in relaying their, often distressing, stories. We would also like to thank Ursula Algar for her insight and immense help with contacting the participants selected to participate in this study. This study was generously funded by the South African Medical Research Council and in part by the Struwig-Germeshuysen Kankernavorsingstrust.

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Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  1. 1.MRC/UCT Human Genetics Research Unit, Division of Human Genetics, Institute for Infectious Diseases and Molecular MedicineUniversity of Cape Town and Groote Schuur HospitalCape TownSouth Africa

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