@article{d3b79e3b58e94912923611f2aed14b29,
title = "Longitudinal patterns in fear of cancer progression in patients with rare, advanced cancers undergoing comprehensive tumour genomic profiling",
abstract = "Introduction: Fear of cancer progression (FCP) impacts quality of life and is a prevalent unmet need in patients diagnosed with advanced cancer, particularly as treatment options are reduced. We aimed to identify longitudinal patterns in FCP over 6 months in patients with advanced cancer receiving comprehensive tumour genomic profiling (CTGP) results, and their correlates. Methods: Patients with pathologically confirmed metastatic disease (∼70% rare cancers) receiving or post their last line of standard therapy completed questionnaires at T0 (prior to CTGP), T1 (immediately post CTGP results) and T2 (2 months later). Results: High stable (N = 52; 7.3%) and low/moderate stable (N = 56; 7.8%) FCP patterns over time typified the largest participant groups (N = 721). Those with an immediately actionable variant versus a non-actionable variant (p = 0.045), with higher FCP (p < 0.001), and lower Functional Assessment of Chronic Illness Therapy—Spiritual Well-being (FACIT-Sp) scores (p = 0.006) at T0, had higher FCP at T1. Those with higher FCP at T0 (p < 0.001) and at T1 (p < 0.001), lower FACIT-Sp scores at T1 (p = 0.001), lower education (p = 0.031) and female gender (p = 0.027) had higher FCP at T2. Discussion: Routine screening for psychological/spiritual characteristics in those about to undergo CTGP may help to identify patients who may benefit from closer monitoring and provision of psychosocial support. Future studies should explore interventions to best address FCP in this vulnerable group, as interventions assessed to date have almost all addressed patients with curative cancers or newly diagnosed advanced disease.",
keywords = "Psycho-oncology, advanced cancer, cancer, comprehensive tumour genomic profiling, fear of cancer progression, genomics, longitudinal, oncology, psychosocial",
author = "{Members of the PiGeOn Project} and Butow, {Phyllis N.} and Fabiola M{\"u}ller and Napier, {Christine E.} and Nicci Bartley and Ballinger, {Mandy L.} and Barbara Biesecker and Ilona Juraskova and Bettina Meiser and Schlub, {Timothy E.} and Thomas, {David M.} and David Goldstein and Best, {Megan C.} and Ainsley Newson and Katherine Tucker and Richard Vines and Kate Vines and Judy Kirk and Young, {Mary Anne} and Jacqueline Savard and Chris Jacobs",
note = "Funding Information: The Genetic Cancer Risk in the Young study is funded via Omico by the Commonwealth Government of Australia, the New South Wales Ministry of Health, Genomics Australia and the Vodafone Foundation. The PiGeOn Project is funded by a National Health and Medical Research Council (NHMRC) of Australia Project grant (ID1124749). The authors received the following support: Phyllis Butow—NHMRC Senior Principal Research Fellowship (APP1121630); Megan C. Best—Cancer Institute NSW Post‐Doctoral Research Fellowship (MB00352); Bettina Meiser—NHMRC Senior Research Fellowship Level B (ID1078523); Mandy L. Ballinger—Cancer Institute NSW Career Development Fellowship (CDF171109); David M. Thomas—NHMRC Principal Research Fellowship (APP1104364). Funding Information: The authors would like to thank the PiGeOn participants for their time and willingness to share their experiences. The Genetic Cancer Risk in the Young study is funded via Omico by the Commonwealth Government of Australia, the New South Wales Ministry of Health, Genomics Australia and the Vodafone Foundation. The PiGeOn Project is funded by a National Health and Medical Research Council (NHMRC) of Australia Project grant (ID1124749). The authors received the following support: Phyllis Butow?NHMRC Senior Principal Research Fellowship (APP1121630); Megan C. Best?Cancer Institute NSW Post-Doctoral Research Fellowship (MB00352); Bettina Meiser?NHMRC Senior Research Fellowship Level B (ID1078523); Mandy L. Ballinger?Cancer Institute NSW Career Development Fellowship (CDF171109); David M. Thomas?NHMRC Principal Research Fellowship (APP1104364). Publisher Copyright: {\textcopyright} 2021 John Wiley & Sons Ltd.",
year = "2021",
month = nov,
doi = "https://doi.org/10.1002/pon.5764",
language = "English",
volume = "30",
pages = "1920--1929",
journal = "Psycho-Oncology",
issn = "1057-9249",
publisher = "John Wiley and Sons Ltd",
number = "11",
}