Salud Mental

Fear of cancer recurrence in informal caregivers of childhood cancer survivors

##plugins.themes.bootstrap3.article.main##

Fatima Sagrario Espinoza-Salgado
Edgar Landa-Ramírez
Rebeca Robles

Abstract

Background. Fear of cancer recurrence is one of the most distressing psychological consequences in cancer survivors and their informal primary caregivers (IPC). IPC of childhood cancer survivors (CCS) are often their mothers, which could intensify fear of cancer recurrence (FCR) and its impact on both IPC and CCS. However, the phenomenon has not been widely described in this specific population.

Objective. To summarize and analyze current evidence on the evaluation and management of FCR among IPC of CCS.

Method. A narrative review of studies included in four databases (PsycInfo, Medline, CINALH, and Web of Science) with no language or year of publication restrictions.

Results. Measures specifically developed to assess FCR among IPC of CCS comprising an interview and a questionnaire with initial psychometric evaluations and two short, online intervention programs based on cognitive-behavioral-contextual therapy were identified (ENGAGE and CASCAdE). Both have demonstrated acceptability in parents of CCS in high-income countries; preliminary evidence also exists of the effectivity of CASCAdE in reducing FCR.

Discussion and conclusion. Given the limitations of this area of psychological evaluation, the Fear of Cancer Recurrence Inventory, originally developed for adult cancer survivors, constitutes the most suitable tool for evaluating FCR among IPC of CCS. The CASCAdE program seems a promising intervention for IPC of CSS, although cultural adaptations, evaluations of its acceptability in low- and middle-income countries, and controlled studies in large samples are still required.
Keywords:
Fear of cancer recurrence, caregivers, childhood cancer, survivors

Downloads

Download data is not yet available.

References

Abate, C., Lippé, S., Bertout, L., Drouin, S., Krajinovic, M., Rondeau, É., … Sultan, S. (2018). Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia. Pediatric Blood & Cancer, 65(2). doi: 10.1002/pbc.26840

Altuve, J. J. (2020). Distrés psicológico, miedo a la recurrencia del cáncer y calidad de vida relacionada con la salud en sobrevivientes de cáncer de mama venezolanas. Psicooncología, 17, 239-253. doi: 10.5209/psic.72019

Bhatia, S., Landier, W., Casillas, J., & Zeltzer, L. (2006). Medical and Psychosocial Issues in Childhood Cancer Survivors. In A. E. Chang, D. F. Hayes, H. I. Pass, R. M. Stone, P. A. Ganz, T. J. Kinsella, J. H. Schiller, & V. J. Strecher (Eds.), Oncology an evidence-based approach (pp. 1801-1813). Nueva York, NY: Springer. doi: 10.1007/0-387-31056-8_102

Butow, P., Sharpe, L., Thewes, B., Turner, J., Gilchrist, J., & Beith, J. (2018). Fear of Cancer Recurrence: A Practical Guide for Clinicians. Oncology (Williston Park, N.Y.), 32(1), 32-38.

Carreño-Moreno, S., Chaparro-Díaz, L., & Blanco-Sánchez, P. (2017) Cuidador familiar del niño con cáncer: Un rol en transición. Revista Latinoaméricana de Bioética, 17(2), 18-30. doi: 10.18359/rlbio.2781

Chen, D., Sun, W., Liu, N., Wang, J., Zhao, J., Zhang, Y., … Zhang, W., (2018). Fear of Cancer Recurrence: A Systematic Review of Randomized, Controlled Trials. Oncology Nursing Forum, 45(6), 703-712. doi: 10.1188/18.ONF.703-712

Cupit-Link, M., Syrjala, K. L., & Hashmi, S. K. (2018). Damocles’ syndrome revisited: Update on the fear of cancer recurrence in the complex world of today’s treatments and survivorship. Hematology/Oncology and Stem Cell Therapy, 11(3), 129-134. doi: 10.1016/j.hemonc.2018.01.005

DeVellis, R. F. (2017). Scale development: Theory and application. California: Sage Publications.

Duran, B. (2011). Developing a Scale to Measure Parental Worry and Their Attitudes Toward Childhood Cancer After Successful Completion of Treatment: A pilot study. Journal of Pediatric Oncology Nursing, 28(3), 154-168. doi: 10.1177/1043454210397755

Ernst, M., Brähler, E., Klein, E. M., Jünger, C., Wild, P. S., Faber, J., … Beutel, M. E. (2020). What’s past is prologue: Recalled parenting styles are associated with childhood cancer survivors’ mental health outcomes more than 25 years after diagnosis. Social Science & Medicine, 252, 112916. doi: 10.1016/j.socscimed.2020.112916

Fardell, J. E., Thewes, B., Turner, J., Gilchrist, J., Sharpe, L., Smith, A., … Butow, P. (2016). Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation. Journal of Cancer Survivorship, 10(4), 663-673. doi: 10.1007/s11764-015-0512-5

Ferlay, J., Colombet, M., Soerjomataram, I., Mathers, C., Parkin, D. M., Piñeros, M., … Bray, F. (2019). Estimating the global cancer incidence and mortality in 2018: GLOBOCAN sources and methods. International Journal of Cancer, 144(8), 1941-1953. doi: 10.1002/ijc.31937

Fitch, M. I., Sharp, L., Hanly, P., & Longo, C. J. (2021). Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: a systematic review of qualitative studies. Journal of Cancer Survivorship: Research and Practice, 16, 314-328. doi: 10.1007/s11764-021-01025-7

Furr, M. (2018). Psychometrics: An Introduction (3rd Ed.). Los Angeles: Sage.

Hanratty, B., Holland, P., Jacoby, A., & Whitehead, M. (2007). Financial stress and strain associated with terminal cancer--a review of the evidence. Palliative Medicine, 21(7), 595-607. doi: 10.1177/0269216307082476

Hayes, S. C., Strosahl, K., & Wilson, K. G. (2015) Terapia de aceptación y compromiso: proceso práctica del cambio consiente (mindfulness). Bilbao, España: Descleé de Brouwer.

Holosbach, G., & Solares, T. (2010). Experiences of caregiver of children and teenagers with cancer. Serie: Ciencias da Saúde, 11(1), 89-108.

Instituto Nacional de Estadística y Geografía [INEGI]. (2020). INEGI Estadísticas a propósitos del día mundial del internet, datos nacionales. Retrieved from https://www.inegi.org.mx/contenidos/saladeprensa/aproposito/2020/eap_internet20.pdf

International Test Commission [ITC]. (2013). ITC Guidelines on Test Use (ITC-G-TU-20131008). Retrieved from https://www.intestcom.org/files/guideline_test_use.pdf

Iwai, N., Shimada, A., Iwai, A., Yamaguchi, S., Tsukahara, H., & Oda, M. (2017). Childhood cancer survivors: Anxieties felt after treatment and the need for continued support. Pediatrics International: Official Journal of the Japan Pediatric Society, 59(11), 1140-1150. doi: 10.1111/ped.13390

Kalra, H., Kamath, P., Trivedi, J. K., & Janca, A. (2008). Caregiver burden in anxiety disorders. Current Opinion in Psychiatry, 21(1), 70-73. doi: 10.1097/yco.0b013e3282f2dfca

Kazak, A., Alderfer, A., Streisand, R., Simms, S., Rourke, M., Barakat, L., … Cnaan, A. (2004). Treatment of Posttraumatic Stress Symptoms in Adolescent Survivors of Childhood Cancer and Their Families: A Randomized Clinical Trial. Journal of Family Psychology, 18(3), 493-504. doi: 10.1037/0893-3200.18.3.493

Kazak, A., Simms, S., Barakat, L., Hobbie, W., Foley, B., Golomb, V., … Best, M. (1999). Surviving Cancer Competently Intervention Program (SCCIP): A Cognitive-Behavioral and Family Therapy Intervention for Adolescent Survivors of Childhood Cancer and Their Families. Family Process, 38(2), 176-191. doi: 10.1111/j.1545-5300.1999.00176.x

Kearney, J. A., Salley, C. G., & Muriel, A. C. (2015). Standards of Psychosocial Care for Parents of Children with Cancer. Pediatric Blood & Cancer, 62(Suppl 5), S632-683. doi: 10.1002/pbc.25761

Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., … Sung, L. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 26(36), 5884-588. doi: 10.1200/JCO.2007.15.2835

Koyanagi, A., DeVylder, J. E., Stubbs, B., Carvalho, A. F., Veronese, N., Haro, J. M., & Santini, Z. I. (2018). Depression, sleep problems, and perceived stress among informal caregivers in 58 low-, middle-, and high-income countries: A cross-sectional analysis of community-based surveys. Journal of Psychiatric Research, 96, 115-123. doi: 10.1016/j.jpsychires.2017.10.001

Kuba, K., & Weißflog, G. (2017). Acceptanceand Commitment Therapy in the Treatmentof ChronicDisease. Psychotherapie, Psychosomatik,Medizinische Psychologie, 67(12), 525-536. doi: 10.1055/s-0043-118742

Kurt, B. A., Nolan, V. G., Ness, K. K., Neglia, J. P., Tersak, J. M., Hudson, M. M., … Arora, M. (2012). Hospitalization rates among survivors of childhood cancer in the Childhood Cancer Survivor Study cohort. Pediatric Blood & Cancer, 59(1), 126-132. doi: 10.1002/pbc.24017

Lebel, S., Maheu, C., Lefebvre, M., Secord, S., Courbasson, C., Singh, M., … Catton, P. (2014). Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study. Journal of Cancer Survivorship: Research and Practice, 8(3), 485-496. doi: 10.1007/s11764-014-0357-3

Lin, C. R., Chen, S. C., Chang, J. T., Fang, Y. Y., & Lai, Y. H. (2016). Fear of cancer recurrence and its impacts on quality of life in family caregivers of patients with head and neck cancers. Journal of Nursing Research, 24(3), 240-248. doi: 10.1097/jnr.0000000000000169

Lin, C. R., Chen, S. C., Simard, S., Chang, J. T., & Lai, Y. H. (2018). Psychometric testing of the Fear of Cancer Recurrence Inventory-caregiver Chinese version in cancer family caregivers in Taiwan. Psycho-Oncology, 27(6), 1580-1588. doi: 10.1002/pon.4697

Manterola, C., Astudillo, P., Arias, E., Claros, N., & Grupo MINCIR. (2013) Revisiones sistemáticas de la literatura. Qué se debe saber acerca de ellas. Cirugía Española, 91(3), 149-155. doi: 10.1016/j.ciresp.2011.07.009

Marcus, A. (March 24, 2004). Debate heats up on defining a cancer survivor. The Wall Street Journal. Retrieved from https://www.wsj.com/articles/SB108008897185563641

Marzorati, C., Riva, S., & Pravettoni, G. (2017). Who Is a Cancer Survivor? A Systematic Review of Published Definitions. Journal of Cancer Education, 32(2), 228-237. doi: 10.1007/s13187-016-0997-2

McGinty, H. L., Goldenberg, J. L., & Jacobsen, P. B. (2012) Relationship of threat appraisal with coping appraisal to fear of cancer recurrence in breast cancer survivors. Psycho-Oncology, 21(2), 203-210. doi: 10.1002/pon.1883

Mellon, S., Kershaw, T. S., Northouse, L. L., & Freeman-Gibb, L. (2007). A family-based model to predict fear of recurrence for cancer survivors and their caregivers. Psycho-Oncology, 16(3), 214-223. doi: 10.1002/pon.1074

Mitchell, A. J. (2007). Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders. Journal of Clinical Oncology, 25(29), 4670-4681. doi: 10.1200/JCO.2006.10.0438

Montero, X. (2013). Valoración integral y factores de cambio en la carga de cuidadores primarios informales de niños con cáncer (Doctoral dissertation). Retrieved from http://www.ciencianueva.unam.mx/xmlui/handle/123456789/83

Montero, X., Espinoza, F., Bravo, M., & Méndez, J. (2017) Ansiedad en Cuidadores primarios informales de niños y adultos con cáncer. In: C. Roja & Y. Gutiérrez (Eds.). Psicooncología 2: Enfoques, Avances e Investigación (pp. 297-318). Chile: Nueva Mirada Ediciones. Retrieved from https://dialnet.unirioja.es/servlet/libro?codigo=851170

Montero, X., Jurado, S., & Méndez, J. (2014). Carga, ansiedad y depresión en cuidadores primarios informales de niños con cáncer. Psicología y Salud, 24(1), 45-53

Nam, G. E., Warner, E. L., Morreall, D. K., Kirchhoff, A. C., Kinney, A. Y., & Fluchel, M. (2016). Understanding psychological distress among pediatric cancer caregivers. Supportive Care in Cancer, 24(7), 3147-3155. doi: 10.1007/s00520-016-3136-z

National Cancer Institute [NCI]. (2020). Cancer Diccionary. Retrieved from https://www.cancer.gov/espanol/publicaciones/diccionario/ampliar/S

Northouse, L. L. (1981). Mastectomy patients and the fear of cancer recurrence. Cancer Nursing, 4(3), 213-220. doi: 10.1097/00002820-198106000-00004

Nunally, J., & Bernstein, I. (1994). Psychometric Theory (3rd Ed.). New York: McGraw-Hill.

Oeffinger, K. C., Hudson, M. M., & Landier, W. (2009). Survivorship: Childhood cancer survivors. Primary Care: Clinics in Office Practice, 36(4), 743-780. doi: 10.1016/j.pop.2009.07.007

Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., … Childhood CancerSurvivorStudy. (2006). Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine, 355(15), 1572-1582. doi: 10.1056/NEJMsa060185

Pierce, L., Hocking, M. C., Schwartz, L. A., Alderfer, M. A., Kazak, A. E., & Barakat, L. P. (2017). Caregiver distress and patient health-related quality of life: Psychosocial screening during pediatric cancer treatment. Psycho-Oncology, 26(10), 1555-1561. doi: 10.1002/pon.4171

Piñeros, M., Mery, L., Soerjomataram, I., Bray, F., & Steliarova-Foucher, E. (2021). Scaling Up the Surveillance of Childhood Cancer: A Global Roadmap. Journal of the National Cancer Institute, 113(1), 9-15. doi: 10.1093/jnci/djaa069

Prussien, K. V., Murphy, L. K., Gerhardt, C. A., Vannatta, K., Bemis, H., Desjardins, L., … Compas, B. E. (2018). Longitudinal associations among maternal depressive symptoms, child emotional caretaking, and anxious/depressed symptoms in pediatric cancer. Journal of Family Psychology, 32(8), 1087-1096. doi: 10.1037/fam0000463

Rebholz, C. E., Reulen, R. C., Toogood, A. A., Frobisher, C., Lancashire, E. R., Winter, D. L., … Hawkins, M. M. (2011). Health care use of long-term survivors of childhood cancer: the British Childhood Cancer Survivor Study. Journal of Clinical Oncology, 29(31), 4181-4188. doi: 10.1200/JCO.2011.36.5619

Reyes-Lagunes, I., & García-Barragán, L. F. (2008). Procedimiento de validación psicométrica culturalmente relevante: Un ejemplo. La Psicología Social en México, 12(1), 625-630.

Rivera-Luna, R., Zapata-Tarres, M., Shalkow-Klincovstein, J., Velasco-Hidalgo, L., Olaya-Vargas, A., Finkelstein-Mizrahi, N., … Aguilar-Ortiz, M. R. (2017). The burden of childhood cancer in Mexico: Implications for low- and middle-income countries. Pediatric Blood & Cancer, 64(6), e26366. doi: 10.1002/pbc.26366

Rodríguez-Romo, L., Olaya Vargas, A., Gupta, S., Shalkow-Klincovstein, J., Vega-Vega, L., Reyes-Lopez., … Booth, C. M., (2018). Delivery of Pediatric Cancer Care in Mexico: A National Survey. Journal of Global Oncology, 4, 1-12. doi: 10.1200/JGO.17.00238

Romito, F., Goldzweig, G., Cormio, C., Hagedoorn, M., & Andersen B. (2013). Informal Caregiving for cancer patients. Cancer, 119(Suppl 11), 2160-2169. doi: 10.1002/cncr.28057

Seitz, D. C., Knaevelsrud, C., Duran, G., Waadt, S., & Goldbeck, L. (2014). Internet-based psychotherapy in young adult survivors of pediatric cancer: feasibility and participants’ satisfaction. Cyberpsychology, Behavior and Social Networking, 17(9), 624-629. doi: 10.1089/cyber.2014.0066

Shalkow, J. (2017). Cáncer en México, Situación Actual y Retos, (58). Retrieved from: https://www.paho.org/sites/default/files/Cancer-infantil-en-MEXICO.pdf

Sharkey, C. M., Clawson, A. H., Mullins, L. L., Brinkman, T. M., Pui, C. H., Hudson, M. M., & Krull, K. R. (2019). The relationship of child executive functions to parenting capacities in childhood acute lymphoblastic leukemia survivors. Pediatric Blood & Cancer, 66(8), e27761. doi: 10.1002/pbc.27761

Sharpe, L., Turner, J., Fardell, J. E., Thewes, B., Smith, A. B., Gilchrist, J., … Butow, P. (2019). Psychological intervention (ConquerFear) for treating fear of cancer recurrence: mediators and moderators of treatment efficacy. Journal of Cancer Survivorship, 13(5), 695-702. doi: 10.1007/s11764-019-00788-4

Simard, S., & Savard, J. (2009) Fear of Cancer Recurrence Inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence. Supportive Care Cancer, 17(3), 241‐251. doi: 10.1007/s00520-008-0444-y

Simard, S., Thewes, B., Humphris, G., Dixon, M., Hayden, C., Mireskandari, S., & Ozakinci, G. (2013). Fear of cancer recurrence in adult cancer survivors: A systematic review of quantitative studies. Journal of Cancer Survivorship, 7(3), 300-322. doi: 10.1007/s11764-013-0272-z

Simonelli, L. E., Siegel, S. D., & Duffy, N. M. (2017). Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management. Psycho-Oncology, 26(10), 1444-1454. doi: 10.1002/pon.4168

Steliarova-Foucher, E., Colombet, M., Ries, L., Moreno, F., Dolya, A., Bray, F., … IICC-3 Contributors. (2017). International incidence of childhood cancer, 2001-10: a population-based registry study. The Lancet Oncology, 18(6), 719-731. doi: 10.1016/S1470-2045(17)30186-9

Streiner, D. L., Norman, G. R., & Cairney, J. (2015). Health measurement scales: A practical guide to their development and use (5th Ed). New York, NY: Oxford University Press.

Suh, E., Stratton, K. L., Leisenring, W. M., Nathan, P. C., Ford, J. S., Freyer, D. R., …Henderson, T. O. (2020). Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: A retrospective cohort analysis from the Childhood Cancer Survivor Study. The Lancet Oncology, 21(3), 421-435. doi: 10.1016/S1470-2045(19)30800-9

Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., … Cohn, R. J. (2015). Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomized controlled trial. Trials, 16, 153. doi: 10.1186/s13063-015-0681-6

Wakefield, C., Sansom-Daly, U., McGill, B., Ellis, S., Doolan, E., Roberson, E., … Cohn, R. (2016). Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: Cascade. Supportive Care Cancer, 24(6), 2685-2694. doi: 10.1007/s00520-016-3077-6

Ward, E., DeSantis, C., Robbins, A., Kohler, B., & Jemal, A. (2014). Childhood and adolescent cancer statistics, 2014. CA: A Cancer Journal for Clinicians, 64(2), 83-103. doi: 10.3322/caac.21219

Wikman, A., Mattsson, E., von Essen, L., & Hovén, E. (2018). Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child’s death. Acta Oncologica (Stockholm, Sweden), 57(7), 950-957. doi: 10.1080/0284186X.2018.1445286

Woodford, J., Wikman, A., Cernvall, M., Ljungman, G., Romppala, A., Grönqvist, H., & von Essen, L. (2018). Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer. BMJ Open, 8(6), e023708. doi: 10.1136/bmjopen-2018-023708