Skip to main content
Top
Published in: Journal of Cancer Survivorship 5/2023

21-03-2022

Self-reported symptoms among cancer survivors in the Women’s Health Initiative (WHI) Life and Longevity after Cancer (LILAC) cohort

Authors: Brittany M. Bernardo, Michael L. Pennell, Michelle J. Naughton, Nils Patrik Brodin, Marian L. Neuhouser, Rowan T. Chlebowski, Electra D. Paskett

Published in: Journal of Cancer Survivorship | Issue 5/2023

Login to get access

Abstract

Purpose

Due to cancer survivors living longer and morbidity associated with cancer treatments, it is necessary to understand symptoms experienced by cancer survivors. This study will analyze the symptom burden among a large cohort of survivors across multiple cancer sites.

Methods

Data from the Women’s Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study were used to examine the symptom burden of older cancer survivors. Poisson regression with robust standard errors was utilized to determine differences in symptoms by cancer site, treatment, and other covariates.

Results

The most frequently reported symptoms among cancer survivors were fatigue (15.8%) and feeling sad or depressed (14.1%). Multivariable analyses indicated that more symptoms were reported among survivors who were younger (p = 0.002), divorced or separated (p = 0.03), and had a combination of public and private insurance (p = 0.01). Survivors who received chemotherapy (p < 0.001), radiation (p = 0.01), or hormone therapy (p = 0.02) reported more symptoms than survivors who did not receive these treatments. Survivors diagnosed with cancer < 5 years ago reported fewer symptoms than longer-term survivors, particularly those diagnosed > 10 years ago (p = 0.02).

Conclusions

Results indicate that common physical and psychological symptoms are reported across cancer types. Cancer survivors diagnosed with cancer 10 or more years ago reported more symptoms than those recently diagnosed. This suggests that symptoms may remain a problem for some survivors decades after their diagnosis.

Implications for Cancer Survivors

Future research should focus on implementing active surveillance of cancer survivors. Healthcare providers and those who care for cancer survivors should understand that the symptom burden associated with cancer may persist even decades following diagnosis.
Appendix
Available only for authorised users
Literature
1.
go back to reference Cancer treatment & survivorship facts & figures 2019–2021. Atlanta: American Cancer Society; 2019. Cancer treatment & survivorship facts & figures 2019–2021. Atlanta: American Cancer Society; 2019.
2.
go back to reference Shahrokni A, Wu AJ, Carter J, Lichtman SM. Long-term toxicity of cancer treatment in older patients. Clin Geriatr Med. 2016;32(1):63–80.CrossRefPubMed Shahrokni A, Wu AJ, Carter J, Lichtman SM. Long-term toxicity of cancer treatment in older patients. Clin Geriatr Med. 2016;32(1):63–80.CrossRefPubMed
4.
go back to reference Harrington CB, Hansen JA, Moskowitz M, Todd BL, Feuerstein M. It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med. 2010;40(2):163–81.CrossRefPubMed Harrington CB, Hansen JA, Moskowitz M, Todd BL, Feuerstein M. It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med. 2010;40(2):163–81.CrossRefPubMed
5.
go back to reference Gosain R, Miller K. Symptoms and symptom management in long-term cancer survivors. Cancer J. 2013;19(5):405–9.CrossRefPubMed Gosain R, Miller K. Symptoms and symptom management in long-term cancer survivors. Cancer J. 2013;19(5):405–9.CrossRefPubMed
6.
go back to reference Paskett ED, Caan BJ, Johnson L, et al. The Women’s Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study: description and baseline characteristics of participants. Cancer Epidemiol Biomarkers Prev. 2018;27(2):125–37.CrossRefPubMedPubMedCentral Paskett ED, Caan BJ, Johnson L, et al. The Women’s Health Initiative (WHI) Life and Longevity After Cancer (LILAC) study: description and baseline characteristics of participants. Cancer Epidemiol Biomarkers Prev. 2018;27(2):125–37.CrossRefPubMedPubMedCentral
7.
go back to reference Singh JA, Satele D, Pattabasavaiah S, Buckner JC, Sloan JA. Normative data and clinically significant effect sizes for single-item numerical linear analogue self-assessment (LASA) scales. Health Qual Life Outcomes. 2014;12:187.CrossRefPubMedPubMedCentral Singh JA, Satele D, Pattabasavaiah S, Buckner JC, Sloan JA. Normative data and clinically significant effect sizes for single-item numerical linear analogue self-assessment (LASA) scales. Health Qual Life Outcomes. 2014;12:187.CrossRefPubMedPubMedCentral
8.
go back to reference Haisfield-Wolfe ME, McGuire DB, Soeken K, Geiger-Brown J, De Forge BR. Prevalence and correlates of depression among patients with head and neck cancer: a systematic review of implications for research. Oncol Nurs Forum. 2009;36(3):E107-125.CrossRefPubMed Haisfield-Wolfe ME, McGuire DB, Soeken K, Geiger-Brown J, De Forge BR. Prevalence and correlates of depression among patients with head and neck cancer: a systematic review of implications for research. Oncol Nurs Forum. 2009;36(3):E107-125.CrossRefPubMed
9.
go back to reference Halpern MT, Brawley OW. Insurance status, health equity, and the cancer care continuum. Cancer. 2016;122(20):3106–9.CrossRefPubMed Halpern MT, Brawley OW. Insurance status, health equity, and the cancer care continuum. Cancer. 2016;122(20):3106–9.CrossRefPubMed
10.
go back to reference Horick NK, Muzikansky A, Gutierrez HL, Boyd KL, Finkelstein DM. Physical symptoms in long-term survivors of rare cancer. J Cancer Surviv. 2018;12(6):835–42.CrossRefPubMedPubMedCentral Horick NK, Muzikansky A, Gutierrez HL, Boyd KL, Finkelstein DM. Physical symptoms in long-term survivors of rare cancer. J Cancer Surviv. 2018;12(6):835–42.CrossRefPubMedPubMedCentral
11.
go back to reference Klemp JR, Myers JS, Fabian CJ, et al. Cognitive functioning and quality of life following chemotherapy in pre- and peri-menopausal women with breast cancer. Support Care Cancer. 2018;26(2):575–83.CrossRefPubMed Klemp JR, Myers JS, Fabian CJ, et al. Cognitive functioning and quality of life following chemotherapy in pre- and peri-menopausal women with breast cancer. Support Care Cancer. 2018;26(2):575–83.CrossRefPubMed
12.
go back to reference Mao JJ, Armstrong K, Bowman MA, Xie SX, Kadakia R, Farrar JT. Symptom burden among cancer survivors: impact of age and comorbidity. Journal of the American Board of Family Medicine : JABFM. 2007;20(5):434–43.CrossRefPubMed Mao JJ, Armstrong K, Bowman MA, Xie SX, Kadakia R, Farrar JT. Symptom burden among cancer survivors: impact of age and comorbidity. Journal of the American Board of Family Medicine : JABFM. 2007;20(5):434–43.CrossRefPubMed
13.
go back to reference van Buuren S. Multiple imputation of discrete and continuous data by fully conditional specification. Stat Methods Med Res. 2007;16(3):219–42.CrossRefPubMed van Buuren S. Multiple imputation of discrete and continuous data by fully conditional specification. Stat Methods Med Res. 2007;16(3):219–42.CrossRefPubMed
14.
go back to reference Lathan CS, Cronin A, Tucker-Seeley R, Zafar SY, Ayanian JZ, Schrag D. Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. J Clin Oncol. 2016;34(15):1732–40.CrossRefPubMedPubMedCentral Lathan CS, Cronin A, Tucker-Seeley R, Zafar SY, Ayanian JZ, Schrag D. Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. J Clin Oncol. 2016;34(15):1732–40.CrossRefPubMedPubMedCentral
15.
go back to reference Broeckel JA, Thors CL, Jacobsen PB, Small M, Cox CE. Sexual functioning in long-term breast cancer survivors treated with adjuvant chemotherapy. Breast Cancer Res Treat. 2002;75(3):241–8.CrossRefPubMed Broeckel JA, Thors CL, Jacobsen PB, Small M, Cox CE. Sexual functioning in long-term breast cancer survivors treated with adjuvant chemotherapy. Breast Cancer Res Treat. 2002;75(3):241–8.CrossRefPubMed
16.
go back to reference Clark CJ, Fino NF, Liang JH, Hiller D, Bohl J. Depressive symptoms in older long-term colorectal cancer survivors: a population-based analysis using the SEER-Medicare healthcare outcomes survey. Support Care Cancer. 2016;24(9):3907–14.CrossRefPubMedPubMedCentral Clark CJ, Fino NF, Liang JH, Hiller D, Bohl J. Depressive symptoms in older long-term colorectal cancer survivors: a population-based analysis using the SEER-Medicare healthcare outcomes survey. Support Care Cancer. 2016;24(9):3907–14.CrossRefPubMedPubMedCentral
18.
go back to reference Karlson CW, Alberts NM, Liu W, et al. Longitudinal pain and pain interference in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2020;126(12):2915–23.CrossRefPubMed Karlson CW, Alberts NM, Liu W, et al. Longitudinal pain and pain interference in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2020;126(12):2915–23.CrossRefPubMed
19.
go back to reference Mustafa Ali M, Moeller M, Rybicki L, Moore HCF. Long-term peripheral neuropathy symptoms in breast cancer survivors. Breast Cancer Res Treat. 2017;166(2):519–26.CrossRefPubMed Mustafa Ali M, Moeller M, Rybicki L, Moore HCF. Long-term peripheral neuropathy symptoms in breast cancer survivors. Breast Cancer Res Treat. 2017;166(2):519–26.CrossRefPubMed
20.
go back to reference Kenyon M, Mayer DK, Owens AK. Late and long-term effects of breast cancer treatment and surveillance management for the general practitioner. Journal of obstetric, gynecologic, and neonatal nursing : JOGNN. 2014;43(3):382–98.CrossRefPubMed Kenyon M, Mayer DK, Owens AK. Late and long-term effects of breast cancer treatment and surveillance management for the general practitioner. Journal of obstetric, gynecologic, and neonatal nursing : JOGNN. 2014;43(3):382–98.CrossRefPubMed
21.
go back to reference Lovelace DL, McDaniel LR, Golden D. Long-term effects of breast cancer surgery, treatment, and survivor care. J Midwifery Womens Health. 2019;64(6):713–24.CrossRefPubMed Lovelace DL, McDaniel LR, Golden D. Long-term effects of breast cancer surgery, treatment, and survivor care. J Midwifery Womens Health. 2019;64(6):713–24.CrossRefPubMed
22.
go back to reference Maass S, Boerman LM, Brandenbarg D, et al. Symptoms in long-term breast cancer survivors: a cross-sectional study in primary care. Breast (Edinburgh, Scotland). 2020;54:133–8.CrossRefPubMed Maass S, Boerman LM, Brandenbarg D, et al. Symptoms in long-term breast cancer survivors: a cross-sectional study in primary care. Breast (Edinburgh, Scotland). 2020;54:133–8.CrossRefPubMed
23.
go back to reference Matthews H, Semper H. “Dropped from the system”: the experiences and challenges of long-term breast cancer survivors. J Adv Nurs. 2017;73(6):1355–65.CrossRefPubMed Matthews H, Semper H. “Dropped from the system”: the experiences and challenges of long-term breast cancer survivors. J Adv Nurs. 2017;73(6):1355–65.CrossRefPubMed
24.
go back to reference Schultz PN, Klein MJ, Beck ML, Stava C, Sellin RV. Breast cancer: relationship between menopausal symptoms, physiologic health effects of cancer treatment and physical constraints on quality of life in long-term survivors. J Clin Nurs. 2005;14(2):204–11.CrossRefPubMed Schultz PN, Klein MJ, Beck ML, Stava C, Sellin RV. Breast cancer: relationship between menopausal symptoms, physiologic health effects of cancer treatment and physical constraints on quality of life in long-term survivors. J Clin Nurs. 2005;14(2):204–11.CrossRefPubMed
25.
go back to reference Oldenmenger WH, Raaf PJ, de Klerk C, van der Rijt C. Cut points on 0–10 numeric rating scales included in the Edmonton Symptom Assessment Scale in cancer patients: a systematic review. J Pain Symptom Manage. 2013;45(6):1083–93.CrossRefPubMed Oldenmenger WH, Raaf PJ, de Klerk C, van der Rijt C. Cut points on 0–10 numeric rating scales included in the Edmonton Symptom Assessment Scale in cancer patients: a systematic review. J Pain Symptom Manage. 2013;45(6):1083–93.CrossRefPubMed
Metadata
Title
Self-reported symptoms among cancer survivors in the Women’s Health Initiative (WHI) Life and Longevity after Cancer (LILAC) cohort
Authors
Brittany M. Bernardo
Michael L. Pennell
Michelle J. Naughton
Nils Patrik Brodin
Marian L. Neuhouser
Rowan T. Chlebowski
Electra D. Paskett
Publication date
21-03-2022
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 5/2023
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-022-01200-4

Other articles of this Issue 5/2023

Journal of Cancer Survivorship 5/2023 Go to the issue
Live Webinar | 01-10-2024 | 12:30 (CEST)

Recent advances in the use of CAR T-cell therapies in relapsed/refractory diffuse large B-cell lymphoma and follicular lymphoma

Live: Tuesday 1st October 2024, 12:30-14:00 (CEST)

In this live webinar, Professor Martin Dreyling and an esteemed, international panel of CAR-T experts will discuss the very latest data on the safety, efficacy and clinical impact of CAR T-cell therapies in the treatment of r/r DLBCL and r/r FL, as presented at ASH 2023, EU CAR-T 2024, and EHA 2024. 

Please note, this webinar is not intended for healthcare professionals based in the US and UK.

Sponsored by: Novartis Pharma AG

Chaired by: Prof. Martin Dreyling
Developed by: Springer Healthcare