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Whole-body MRI surveillance in TP53 carriers is perceived as beneficial with no increase in cancer worry regardless of previous cancer : Data from the Swedish TP53 Study

Omran, Meis ; Johansson, Hemming ; Lundgren, Claudia ; Silander, Gustav ; Stenmark-Askmalm, Marie LU ; Loman, Niklas LU ; Baan, Annika ; Adra, Jamila ; Kuchinskaya, Ekaterina and Blomqvist, Lennart , et al. (2023) In Cancer 129(6). p.946-955
Abstract

Background: To evaluate the psychosocial consequences of surveillance with whole-body MRI (WB-MRI) in individuals with the heritable TP53-related cancer (hTP53rc) syndrome, also known as the Li-Fraumeni syndrome, with regard to cancer worry, perceived benefits and risks to surveillance and overall health. Patients and methods: Since 2016, the national Swedish TP53 Study (SWEP53) has offered surveillance with WB-MRI to all individuals with hTP53rc syndrome. Seventy-five individuals have been included in the study. Sixty consecutive participants fulfilled a base-line evaluation as well as an evaluation after 1 year with structured questionnaires including the Cancer Worry Scale (CWS), perceived benefits and risks of surveillance, and the... (More)

Background: To evaluate the psychosocial consequences of surveillance with whole-body MRI (WB-MRI) in individuals with the heritable TP53-related cancer (hTP53rc) syndrome, also known as the Li-Fraumeni syndrome, with regard to cancer worry, perceived benefits and risks to surveillance and overall health. Patients and methods: Since 2016, the national Swedish TP53 Study (SWEP53) has offered surveillance with WB-MRI to all individuals with hTP53rc syndrome. Seventy-five individuals have been included in the study. Sixty consecutive participants fulfilled a base-line evaluation as well as an evaluation after 1 year with structured questionnaires including the Cancer Worry Scale (CWS), perceived benefits and risks of surveillance, and the 36-item Short Form Survey (SF-36). Individuals with or without previous personal cancer diagnosis were enrolled and results at baseline and after 1 year of surveillance were compared. For SF-36, a comparison with the normal population was also made. Results: Participants with previous cancer tend to worry more about cancer, but both individuals with and without cancer had a positive attitude toward surveillance with no differences regarding perceived benefits and barriers to surveillance. Participants with a previous cancer scored significantly lower on some of the SF-36 subscales, but between-group differences were found only for social functioning after 1 year. Conclusions: Surveillance with WB-MRI is feasible from a psychosocial point of view both among TP53 carriers with as well as without a previous history of cancer and does not increase cancer worry in any of the groups. Plain language summary: Individuals with heritable TP53-related cancer syndrome (also known as the Li-Fraumeni syndrome) have a high lifetime risk of developing cancer. These TP53 carriers are offered surveillance with whole-body MRI to detect cancer early. There are few reports of the psychosocial impact of surveillance. In this study, we wanted to evaluate cancer worry, benefits and barriers to participation, and perceived overall health. Our study shows no increase in cancer worry after 1 year of surveillance, regardless of previous cancer.

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Contribution to journal
publication status
published
subject
keywords
cancer worry scale, health-related quality-of-life, hereditary cancer, heritable TP53-related cancer syndromes, Li-Fraumeni syndrome, surveillance
in
Cancer
volume
129
issue
6
pages
946 - 955
publisher
John Wiley & Sons Inc.
external identifiers
  • scopus:85145678028
  • pmid:36601958
ISSN
0008-543X
DOI
10.1002/cncr.34631
language
English
LU publication?
yes
id
912075a8-1eb8-4240-9b1d-295602c3edbb
date added to LUP
2023-02-13 08:42:59
date last changed
2024-07-12 01:45:18
@article{912075a8-1eb8-4240-9b1d-295602c3edbb,
  abstract     = {{<p>Background: To evaluate the psychosocial consequences of surveillance with whole-body MRI (WB-MRI) in individuals with the heritable TP53-related cancer (hTP53rc) syndrome, also known as the Li-Fraumeni syndrome, with regard to cancer worry, perceived benefits and risks to surveillance and overall health. Patients and methods: Since 2016, the national Swedish TP53 Study (SWEP53) has offered surveillance with WB-MRI to all individuals with hTP53rc syndrome. Seventy-five individuals have been included in the study. Sixty consecutive participants fulfilled a base-line evaluation as well as an evaluation after 1 year with structured questionnaires including the Cancer Worry Scale (CWS), perceived benefits and risks of surveillance, and the 36-item Short Form Survey (SF-36). Individuals with or without previous personal cancer diagnosis were enrolled and results at baseline and after 1 year of surveillance were compared. For SF-36, a comparison with the normal population was also made. Results: Participants with previous cancer tend to worry more about cancer, but both individuals with and without cancer had a positive attitude toward surveillance with no differences regarding perceived benefits and barriers to surveillance. Participants with a previous cancer scored significantly lower on some of the SF-36 subscales, but between-group differences were found only for social functioning after 1 year. Conclusions: Surveillance with WB-MRI is feasible from a psychosocial point of view both among TP53 carriers with as well as without a previous history of cancer and does not increase cancer worry in any of the groups. Plain language summary: Individuals with heritable TP53-related cancer syndrome (also known as the Li-Fraumeni syndrome) have a high lifetime risk of developing cancer. These TP53 carriers are offered surveillance with whole-body MRI to detect cancer early. There are few reports of the psychosocial impact of surveillance. In this study, we wanted to evaluate cancer worry, benefits and barriers to participation, and perceived overall health. Our study shows no increase in cancer worry after 1 year of surveillance, regardless of previous cancer.</p>}},
  author       = {{Omran, Meis and Johansson, Hemming and Lundgren, Claudia and Silander, Gustav and Stenmark-Askmalm, Marie and Loman, Niklas and Baan, Annika and Adra, Jamila and Kuchinskaya, Ekaterina and Blomqvist, Lennart and Tham, Emma and Bajalica-Lagercrantz, Svetlana and Brandberg, Yvonne}},
  issn         = {{0008-543X}},
  keywords     = {{cancer worry scale; health-related quality-of-life; hereditary cancer; heritable TP53-related cancer syndromes; Li-Fraumeni syndrome; surveillance}},
  language     = {{eng}},
  number       = {{6}},
  pages        = {{946--955}},
  publisher    = {{John Wiley & Sons Inc.}},
  series       = {{Cancer}},
  title        = {{Whole-body MRI surveillance in TP53 carriers is perceived as beneficial with no increase in cancer worry regardless of previous cancer : Data from the Swedish TP53 Study}},
  url          = {{http://dx.doi.org/10.1002/cncr.34631}},
  doi          = {{10.1002/cncr.34631}},
  volume       = {{129}},
  year         = {{2023}},
}