Defeating cancer is a feat that many diagnosed patients hope to achieve. However, the fear of cancer recurrence remains, especially in young people. This is an under-researched mental health issue that can have detrimental psychological effects on patients. By Chana Korenblum
Teenagers and young adults (TYAs, aged 15-25 years) diagnosed with cancer are a distinct group, biologically and psychosocially (Ferrari et al., 2021). Cancer types that predominate specifically in this population include lymphomas, germ cell tumours, sarcomas, and thyroid cancers (Barr et al., 2016). TYAs also have unique psychological needs that differ from younger children and older adults (Patterson et al., 2015). As a result of medical breakthroughs, most TYAs survive cancer but face adverse effects later in their treatment course, which can negatively impact their physical and mental health as well as overall quality of life (Trama et al., 2016). A debilitating yet under-researched mental health challenge in this age group is the fear of cancer recurrence (FCR) (Keegan et al., 2012), which is defined as “the fear, worry, or concern relating to the possibility that cancer will come back or progress” (Lebel et al., 2016).
A recent systematic review by Yang et al. is the first to summarise features of FCR in TYAs, including its prevalence, risk factors and consequences (Yang, et al., 2019). Two authors independently and systematically searched 4 databases, explaining eligibility screening, defining inclusion/exclusion criteria, and performing a quality assessment. The search process identified 17 quantitative, cross-sectional studies conducted in North America and Europe, with sample sizes ranging from 20-1395 and ages 12-39 years. FCR was measured using validated questionnaires such as the Cancer Worry Scale (Thewes et al., 2018) and the Concerns About Recurrence Scale (Park & Cho, 2017), and unvalidated, study-specific tools (Zebrack & Chesler, 2001). The Cancer Worry Scale, for example, is a 6-item questionnaire assessing fears about cancer recurrence and the impact of these fears on general functioning, using a 4-point Likert scale (Thewes at al., 2018).
Findings indicate a prevalence of some degree of FCR ranging from 29-85.2% of assessed individuals with 13-62% of these patients describing high levels. Additional results include identification of risk factors for developing FCR, such as high treatment intensity, generalised anxiety, and diminished quality of life. Finally, consequences of untreated FCR were outlined, including poor social and emotional functioning. An unexpected cancer diagnosis can disrupt trajectories typical of this life stage, including educational and occupational pursuits, peer and romantic relationships, and future family planning. These disruptions may then increase levels of psychological distress and worsen quality of life. Treatments were not discussed by these authors, likely given the considerable lack of literature in this area.
This study represents the first systematic examination of FCR in TYAs. The authors clearly describe their search strategy and process following PRISMA procedures, and they display high reliability due to separate database searches; however, several limitations are apparent. Regarding prevalence estimates, multiple studies did not use validated instruments, and consensus is lacking about defining both the TYAs age range and clinically relevant levels of FCR. Furthermore, data from low-income and middle-income countries were absent, sample sizes were small, and qualitative research was excluded. These constraints reduce the universality and validity of the findings, and prevent a deeper understanding of patients’ FCR experiences.
FCR is a common and challenging issue in TYAs that requires further research. The study by Yang et al, 2019, has identified a promising new area for exploration, based on the finding that negative illness perceptions and FCR were predictive of mental health outcomes in TYAs (Horwood et al., 2024). These authors highlight the potential of an intervention targeting negative illness perceptions, which could in turn improve FCR and depression. For example, healthcare team members could use measures to assess how TYAs feel about their diagnosis and how it affects their mood. Depending on the responses, a stepped-care model could be activated, starting with “basic psychoeducation and support to signposting/referral for targeted additional support (e.g., psychology)” (Horwood et al., 2024, p.52).
Other areas for further research include the validation of developmentally appropriate measures with consistent cut-off scores, to better characterise this concern (Yang et al., 2019). Additional quantitative, qualitative, and longitudinal research in more diverse populations is required to understand the functional impacts of FCR in further detail. Finally, after these advances are made, TYA-specific treatments must be designed and evaluated, ideally co-produced with young people. In the meantime, clinicians should consider asking TYAs about FCR, normalising it, and referring to existing support (Thewes et al., 2018). Early intervention may help mitigate the psychosocial consequences of FCR, improving quality of life for young cancer patients (Horwood et al., 2024).
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Barr, R.D., Ferrari, A., Ries, L., Whelan, J., Bleyer, W.A. (2016). Cancer in Adolescents and Young Adults: A Narrative Review of the Current Status and a View of the Future. JAMA pediatrics.
Custers, J.A., Gielissen, M.F., de Wilt, J.H., Honkoop, A., Smilde, T.J., van Spronsen, D.J., et al. (2017). Towards an evidence-based model of fear of cancer recurrence for breast cancer survivors. J Cancer Surviv.
Ferrari, A., Stark, D., Peccatori, F.A., Fern, L., Laurence, V., Gaspar, N., et al. (2021). Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO Open.
Horwood, M., Loades, M.E., Kosir, U., Davis, C. (2024). Illness Perceptions, Fear of Cancer Recurrence, and Mental Health in Teenage and Young Adult Cancer Survivors. J Pediatr Hematol Oncol Nurs.
Keegan, T.H., Lichtensztajn, D.Y., Kato, I., Kent, E.E., Wu, X.C., West, M.M., et al. (2012). Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv.
Lebel, S., Tomei, C., Feldstain, A., Beattie, S., McCallum, M. (2013). Does fear of cancer recurrence predict cancer survivors' health care use? Support Care Cancer.
Lebel, S., Beattie, S., Arès, I., Bielajew, C. (2013). Young and worried: Age and fear of recurrence in breast cancer survivors. Health Psychol.
Lebel, S., Ozakinci, G., Humphris, G., Mutsaers, B., Thewes, B., Prins, J., et al. (2016). From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support Care Cancer.
Mattsson, E., Einhorn, K., Ljungman, L., Sundström-Poromaa, I., Stålberg, K., Wikman, A. (2018). Women treated for gynaecological cancer during young adulthood - A mixed-methods study of perceived psychological distress and experiences of support from health care following end-of-treatment. Gynecol Oncol.
McDonnell, G.A., Pope, A.W., Schuler, T.A., Ford, J.S. (2018). The relationship between cancer‐related worry and posttraumatic growth in adolescent and young adult cancer survivors. England: Chichester. Psycho-oncology.
Mutsaers, B., Jones, G., Rutkowski, N., Tomei, C., Séguin Leclair, C., Petricone-Westwood, D., et al. (2016). When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence. Support Care Cancer.
Park, C.L., Cho, D. (2017). Spiritual well-being and spiritual distress predict adjustment in adolescent and young adult cancer survivors. Psychooncology.
Patterson, P., McDonald, F.E., Zebrack, B., Medlow, S. (2015). Emerging issues among adolescent and young adult cancer survivors. Semin Oncol Nurs.
Poort, H., Kaal, S.E.J., Knoop, H., Jansen, R., Prins, J.B., Manten-Horst, E., et al. (2017). Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls. Support Care Cancer.
Quinn, G.P., Gonçalves, V., Sehovic, I., Bowman, M.L., Reed, D.R. (2015). Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Relat Outcome Meas.
Richter, D., Clever, K., Mehnert-Theuerkauf, A., Schönfelder, A. (2022). Fear of Recurrence in Young Adult Cancer Patients-A Network Analysis. Cancers.
Shapiro, G., Kelaher, M. (2016). The Fear of Cancer Recurrence. Landmarks.
Shay, L.A., Carpentier, M.Y., Vernon, S.W. (2016). Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors. Support Care Cancer.
Simard, S., Savard, J. (2009). Fear of Cancer Recurrence Inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence. Support Care Cancer.
Sun, H., Yang, Y., Zhang, J., Liu, T., Wang, H., Garg, S., et al. (2019). Fear of cancer recurrence, anxiety and depressive symptoms in adolescent and young adult cancer patients. Neuropsychiatr Dis Treat.
Thewes, B., Kaal, S.E.J., Custers, J.A.E., Manten-Horst, E., Jansen, R., Servaes, P., et al. (2018). Prevalence and correlates of high fear of cancer recurrence in late adolescents and young adults consulting a specialist adolescent and young adult (AYA) cancer service. Support Care Cancer.
Trama, A., Botta, L., Foschi, R., Ferrari, A., Stiller, C., Desandes, E., et al. (2016). Survival of European adolescents and young adults diagnosed with cancer in 2000-07: population-based data from EUROCARE-5. Lancet Oncol.
Vandraas, K.F., Reinertsen, K.V., Kiserud, C.E., Lie, H.C. (2021). Fear of cancer recurrence among young adult cancer survivors-exploring long-term contributing factors in a large, population-based cohort. J Cancer Surviv.
Wang, R., Syed, I.A., Nathan, P.C., Barr, R.D., Rosenberg-Yunger, Z.R., Klassen, A.F. (2015). Exploring Cancer Worry in Adolescent and Young Adult Survivors of Childhood Cancers. J Adolesc Young Adult Oncol.
Yang, Y., Li, W., Wen, Y., Wang, H., Sun, H., Liang, W., et al. (2019). Fear of cancer recurrence in adolescent and young adult cancer survivors: A systematic review of the literature. Psychooncology.
Zebrack, B.J., Chesler, M. (2001). Health-related worries, self-image, and life outlooks of long-term survivors of childhood cancer. Health Soc Work.
