Abstract
Many long-term survivors of childhood cancer (LTSCC), individuals at least 5 years post-diagnosis or 2 years post-treatment, experience late- and long-term effects from their treatments, including pain. Yet, pain is poorly understood among LTSCC. The current study aimed to (1a) describe rates and multiple dimensions of pain; (1b) identify patterns of chronic pain; and (2) test correlates of chronic pain in LTSCC. Survivors (n = 140; 48.6% male, Mage = 17.3 years (range = 8–25)) were recruited from across Canada. Between 2017 and 2019, participants completed the Pain Questionnaire, Pain Catastrophizing Scale, Pediatric Quality of Life Inventory, Patient-Reported Outcome Measurement Information System (PROMIS)–Pain Interference, Anxiety, and Depression scales, Child Posttraumatic Stress Scale, the Posttraumatic Stress Disorder Checklist for the DSM-V, and the Cancer Worry Scale.
Results
Twenty-six percent of LTSCC reported experiencing chronic pain. Exploratory cluster analysis showed 20% of survivors had moderate to severe chronic pain based on measures of pain intensity and interference. The combination of higher posttraumatic stress symptoms, older current age, more pain catastrophizing, and sex (being female) significantly predicted the presence of chronic pain in logistic regression, χ2 (4, N = 107) = 28.10, p < .001. Higher pain catastrophizing (OR = 1.09; 95% CI = 1.02–1.16), older current age (OR = 1.20; 95% CI = 1.07–1.34), and higher posttraumatic stress (OR = 1.92; 95% CI = 1.01–3.63) were significant predictors of chronic pain. LTSCC should be screened for the presence and magnitude of chronic pain during long-term follow-up visits so appropriate interventions can be offered and implemented. Future research should investigate pain interventions tailored for this population.
Relevance
Findings support regular screening for the presence and magnitude of chronic pain in survivors of childhood cancer in long-term follow-up care.
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Data availability
The data from the current study is available upon reasonable request to the corresponding author.
Code availability
The syntax used in analyses is available upon reasonable request to the corresponding author.
References
Siegel RL, Miller KD, Jemal A (2016) Cancer statistics, 2016. CA Cancer J Clin 66(1):7–30. https://doi.org/10.3322/caac.21332
Blaauwbroek R, Groenier KH, Kamps WA, Meyboom-de Jong B, Postma A (2007) Late effects in adult survivors of childhood cancer: the need for life-long follow-up. Ann Oncol 18(11):1898–902. https://doi.org/10.1093/annonc/mdm336
Twycross A, Parker R, Williams A, Gibson F (2015) Cancer-related pain and pain management: sources, prevalence, and the experiences of children and parents. J Pediatr Oncol Nurs 32(6):369–84. https://doi.org/10.1177/1043454214563751
Raja SN, et al (2020) The revised International Association for the Study of Pain definition of pain: concepts, challenges, and compromises. Pain https://doi.org/10.1097/j.pain.0000000000001939
Schulte FSM et al (2020) Pain in long-term survivors of childhood cancer: a systematic review of the current state of knowledge and a call to action from the Children’s Oncology Group. Cancer 127(1):35–44. https://doi.org/10.1002/cncr.33289
King S et al (2011) The epidemiology of chronic pain in children and adolescents revisited: a systematic review. Pain 152(12):2729–38. https://doi.org/10.1016/j.pain.2011.07.016
Huguet A, Miro J (2008) The severity of chronic pediatric pain: an epidemiological study. J Pain 9(3):226–36. https://doi.org/10.1016/j.jpain.2007.10.015
Bowers DC et al (2012) Back pain among long-term survivors of childhood leukemia. Journal of Pediatric Hematology and Oncology 34:624–629
Sadighi ZS et al (2014) Headache types, related morbidity, and quality of life in survivors of childhood acute lymphoblastic leukemia: a prospective cross sectional study. Eur J Paediatr Neurol 18(6):722–9. https://doi.org/10.1016/j.ejpn.2014.06.006
Johannsdottir IMR et al (2017) Adverse health outcomes and associations with self-reported general health in childhood lymphoma survivors. J Adolesc Young Adult Oncol 6(3):470–476. https://doi.org/10.1089/jayao.2017.0018
Engel GL (1977) The need for a new medical model: A Challenge for biomedicine. Science 196 (4286). Retrieved from https://intranet.newriver.edu/images/stories/library/stennett_psychology_articles/Need%20for%20a%20New%20Medical%20Model%20%20A%20Challenge%20for%20Biomedicine.pdf
Lu Q et al (2011) Pain in long-term adult survivors of childhood cancers and their siblings: a report from the Childhood Cancer Survivor Study. Pain 152(11):2616–24. https://doi.org/10.1016/j.pain.2011.08.006
Recklitis CJ, Liptak C, Footer D, Fine E, Chordas C, Manley P (2019) Prevalence and correlates of pain in adolescent and young adult survivors of pediatric brain tumors. J Adolesc Young Adult Oncol. https://doi.org/10.1089/jayao.2019.0029
Schultz KA et al (2014) Health conditions and quality of life in survivors of childhood acute myeloid leukemia comparing post remission chemotherapy to BMT: a report from the children’s oncology group. Pediatr Blood Cancer 61(4):729–36. https://doi.org/10.1002/pbc.24881
Brinkman TM et al (2013) Prevalence and predictors of prescription psychoactive medication use in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Cancer Surviv 7(1):104–14. https://doi.org/10.1007/s11764-012-0250-x
Oancea SC et al (2014) Emotional distress among adult survivors of childhood cancer. J Cancer Surviv 8(2):293–303. https://doi.org/10.1007/s11764-013-0336-0
Crom D et al (2010) Health status in long-term survivors of pediatric craniopharyngiomas. J Neurosci Nurs 42(6):323–330
Neville A, Soltani S, Pavlova M, Noel M (2018) Unravelling the relationship between parent and child PTSD and pediatric chronic pain: the mediating role of pain catastrophizing. J Pain 19(2):196–206. https://doi.org/10.1016/j.jpain.2017.10.004
Noel M, Wilson AC, Holley AL, Durkin L, Patton M, Palermo TM (2016) Posttraumatic stress disorder symptoms in youth with vs without chronic pain. Pain 157(10):2277–84. https://doi.org/10.1097/j.pain.0000000000000642
AbSPORU (2018) Patient engagement in health research: A how-to guide for researchers. Retrieved from https://albertainnovates.ca/wp-content/uploads/2018/06/How-To-Guide-Researcher-Version-8.0-May-2018.pdf
McGrath PA (1990) Pain in children: nature, assessment, and treatment. Guilford, New York
Castarlenas E, Jensen MP, von Baeyer CL, Miro J (2017) Psychometric properties of the numerical rating scale to assess self-reported pain intensity in children and adolescents: a systematic review. Clin J Pain 33(4):376–383. https://doi.org/10.1097/AJP.0000000000000406
Varni JW, Seid M, Kurtin PS (2001) PedsQLTM 4.0: reliability and validity of the pediatric quality of Life InventoryTM Version 4.0 generic core scales in healthy and patient populations. Medical Care 39(8):800–812
Crombez G et al (2003) The child version of the pain catastrophizing scale (PCS-C): a preliminary validation. Pain 104(3):639–646. https://doi.org/10.1016/s0304-3959(03)00121-0
Lee I, Garland SN, DeMichele A, Farrar JT, Im EO, Mao JJ (2017) A cross-sectional survey of pain catastrophising and acupuncture use among breast cancer survivors. Acupunct Med 35(1):38–43. https://doi.org/10.1136/acupmed-2016-011056
Prasertsri N, Holden J, Keefe FJ, Wilkie DJ (2011) Repressive coping style: relationships with depression, pain, and pain coping strategies in lung cancer outpatients. Lung Cancer 71(2):235–40. https://doi.org/10.1016/j.lungcan.2010.05.009
Foa EB, Johnson KM, Feeny NC, Treadwell KR (2001) The child PTSD Symptom Scale: a preliminary examination of its psychometric properties. J Clin Child Psychol 30(3):376–84. https://doi.org/10.1207/S15374424JCCP3003_9
Stewart RW, Ebesutani C, Drescher CF, Young J (2017) The Child PTSD Symptom Scale: an investigation of its psychometric properties. J Interpers Violence 32(15):2237–2256. https://doi.org/10.1177/0886260515596536
Blevins CA, Weathers FW, Davis MT, Witte TK, Domino JL (2015) The Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5): development and initial psychometric evaluation. J Trauma Stress 28(6):489–98. https://doi.org/10.1002/jts.22059
Cella D et al (2010) The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol 63(11):1179–94. https://doi.org/10.1016/j.jclinepi.2010.04.011
Hinds PS et al (2013) PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes. Pediatr Blood Cancer 60(3):402–8. https://doi.org/10.1002/pbc.24233
Custers JA, van den Berg SW, van Laarhoven HW, Bleiker EM, Gielissen MF, Prins JB (2014) The Cancer Worry Scale: detecting fear of recurrence in breast cancer survivors. Cancer Nurs 37(1):E44-50. https://doi.org/10.1097/NCC.0b013e3182813a17
Klassen AF et al (2015) The development of scales to measure childhood cancer survivors’ readiness for transition to long-term follow-up care as adults. Health Expect 18(6):1941–55. https://doi.org/10.1111/hex.12241
Thewes B, Lebel S, Seguin Leclair C, Butow P (2016) A qualitative exploration of fear of cancer recurrence (FCR) amongst Australian and Canadian breast cancer survivors. Support Care Cancer 24(5):2269–2276. https://doi.org/10.1007/s00520-015-3025-x
Kazak AE et al (2012) A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment. Pediatr Blood Cancer 59(1):96–9. https://doi.org/10.1002/pbc.23320
Treede RD et al (2015) A classification of chronic pain for ICD-11. Pain 156(6):1003–7. https://doi.org/10.1097/j.pain.0000000000000160
Noel M, Groenewald CB, Beals-Erickson SE, Gebert JT, Palermo TM (2016) Chronic pain in adolescence and internalizing mental health disorders: a nationally representative study. Pain 157(6):1333–8. https://doi.org/10.1097/j.pain.0000000000000522
Palermo TM, Law EF, Fales J, Bromberg MH, Jessen-Fiddick T, Tai G (2016) Internet-delivered cognitive-behavioral treatment for adolescents with chronic pain and their parents: a randomized controlled multicenter trial. Pain 157(1):174–85. https://doi.org/10.1097/j.pain.0000000000000348
Asmundson GJ, Noel M, Petter M, Parkerson HA (2012) Pediatric fear-avoidance model of chronic pain: foundation, application and future directions. Pain Research and Management 17(6):397–405. https://doi.org/10.1155/2012/908061
Chen CX et al (2018) Estimating minimally important differences for the PROMIS pain interference scales: results from 3 randomized clinical trials. Pain 159(4):775–782. https://doi.org/10.1097/j.pain.0000000000001121
Acknowledgements
Study data were collected and managed using REDCap electronic data capture tools hosted at the University of Calgary Clinical Research Unit. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing (1) an intuitive interface for validated data entry; (2) audit trails for tracking data manipulation and export procedures; (3) automated export procedures for seamless data downloads to common statistical packages; and (4) procedures for importing data from external sources.
Funding
The current study was supported by the Arnie Charbonneau Cancer Institute and Daniel Family Foundation.
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Conceptualization: Michaela Patton, Fiona Schulte; methodology: Michaela Patton, Fiona Schulte, Melanie Noel; formal analysis and investigation: Michaela Patton; writing—original draft preparation: Michaela Patton; writing—review and editing: Victoria Forster, Mehak Stokoe, Caitlin Forbes, Melanie Noel, Linda Carlson, Kathleen Reynolds, Kathryn Birnie; funding acquisition: Fiona Schulte; resources: Caitlin Forbes, Mehak Stokoe; supervision: Fiona Schulte.
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Ethics approval was obtained via the local institutional review board (HREBA.CC-17-0059).
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For participants under 18 years old, caregivers provided consent for their child’s participation. Participants under 18 years provided assent. Participants over 18 years provided consent.
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Patton, M., Forster, V.J., Forbes, C. et al. Characterizing pain in long-term survivors of childhood cancer. Support Care Cancer 30, 295–303 (2022). https://doi.org/10.1007/s00520-021-06386-4
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DOI: https://doi.org/10.1007/s00520-021-06386-4