TY - JOUR
T1 - Lived experiences of undergoing regular tumor screening in patients with multiple endocrine neoplasia types 1 and 2 (MEN1/MEN2)
AU - Klein Haneveld, Mirthe Jasmijn
AU - Valk, Gerlof Dirk
AU - van Leeuwaarde, Rachel Sara
N1 - Funding Information: The research presented in the paper was conducted to fulfill the degree requirements of the Master Care Ethics and Policy at the University of Humanistic Studies of the first author. As part of the University of Humanistic Studies thesis process, university teachers Dr. Susanne van den Hooff and Dr. Vivianne Baur made valuable comments on the research proposal and the research process. We thank Rachel Giles for reviewing and editing the language of this article. Finally, we would like to express our gratitude to the board of the Belangengroep MEN for their contribution to participant recruitment and for the organization of the annual patient contact day during which study findings were presented, as well as to all the participants who contributed to this study. No financial support was received for this study. Jehannine Austin served as action editor on this paper. Publisher Copyright: © 2023 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.
PY - 2023/6/26
Y1 - 2023/6/26
N2 - Targeted screening programs for individuals with an increased risk for cancer have become increasingly available. Patients with multiple endocrine neoplasia (MEN), rare genetic conditions associated with the development of tumors in the endocrine glands, undergo intensive surveillance from an early age. Quantitative research has shown that patients with MEN experience fear of disease occurrence in themselves and their family members. However, little is known about the role that intensive, lifelong screening plays in the lives of individuals. This study investigates the lived experiences of patients with MEN undergoing regular tumor screening through an interpretative phenomenological analysis of interviews with 12 patients with MEN1, MEN2A, or MEN2B syndrome. Four experiential group themes are identified: coming to the foreground/fading into the background, relating to uncertainty, experiencing control, and familial context. Screening is characterized as an ambiguous experience that brings MEN to the foreground and may both exacerbate MEN-related uncertainty as well as provide a sense of control over the disease. The experience of undergoing screening is strongly influenced by the familial context, as participants care for and are cared for by family members and understand their disease through familial experiences. Good care according to patients with MEN includes providing family-centered care, addressing the impact on daily functioning and the meaning of illness, support in the interpretation of physical complaints, facilitation of patient experiences of control, and careful attunement to patient needs within a good doctor–patient relationship.
AB - Targeted screening programs for individuals with an increased risk for cancer have become increasingly available. Patients with multiple endocrine neoplasia (MEN), rare genetic conditions associated with the development of tumors in the endocrine glands, undergo intensive surveillance from an early age. Quantitative research has shown that patients with MEN experience fear of disease occurrence in themselves and their family members. However, little is known about the role that intensive, lifelong screening plays in the lives of individuals. This study investigates the lived experiences of patients with MEN undergoing regular tumor screening through an interpretative phenomenological analysis of interviews with 12 patients with MEN1, MEN2A, or MEN2B syndrome. Four experiential group themes are identified: coming to the foreground/fading into the background, relating to uncertainty, experiencing control, and familial context. Screening is characterized as an ambiguous experience that brings MEN to the foreground and may both exacerbate MEN-related uncertainty as well as provide a sense of control over the disease. The experience of undergoing screening is strongly influenced by the familial context, as participants care for and are cared for by family members and understand their disease through familial experiences. Good care according to patients with MEN includes providing family-centered care, addressing the impact on daily functioning and the meaning of illness, support in the interpretation of physical complaints, facilitation of patient experiences of control, and careful attunement to patient needs within a good doctor–patient relationship.
KW - MEN1
KW - MEN2
KW - lived experience
KW - multiple endocrine neoplasia
KW - psychosocial
KW - risk perception
KW - screening
UR - http://www.scopus.com/inward/record.url?scp=85162988261&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/jgc4.1739
DO - https://doi.org/10.1002/jgc4.1739
M3 - Article
C2 - 37357885
SN - 1059-7700
JO - Journal of genetic counseling
JF - Journal of genetic counseling
ER -