Health-Related Quality of Life in Danish Cancer Survivors Referred to a Late Effects Clinic: A Prospective Cohort Study

Authors

  • Lærke Kjær Tolstrup Department of Oncology, Odense University Hospital, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, Odense Denmark https://orcid.org/0000-0001-9554-5385
  • Karin B. Dieperink Department of Oncology, Odense University Hospital, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, Odense Denmark
  • Marieke van Leeuwen Division of Psychosocial Research & Epidemiology, the Netherlands Cancer Institute, Amsterdam, the Netherlands
  • Sören Möller Department of Clinical Research, University of Southern Denmark, Odense Denmark; Open Patient data Explorative Network, Odense University Hospital, Odense C, Denmark
  • Linnea Fechner Department of Oncology, Odense University Hospital, Odense C, Denmark
  • Line Helene Clausen Department of Oncology, Odense University Hospital, Odense C, Denmark
  • Thea Otto Mattsson Department of Oncology, Odense University Hospital, Odense C, Denmark

DOI:

https://doi.org/10.2340/1651-226X.2024.39937

Keywords:

Health-related Quality of Life, Patient-reported Outcomes, EORTC QLQ-SURV100, Late effects, Cancer survivorship, Cancer, late effects clinic, survivorship

Abstract

Purpose: The Region of Southern Denmark has recently established four late effects clinics to help cancer survivors suffering from complex and severe late effects. This study aimed to capture and analyze the full range of physical, mental, and psychosocial issues using patient-reported outcomes. Moreover, we aimed to describe demographic data and the type and severity of the late effects.

Methods: A prospective cohort study was conducted among cancer survivors referred to a late effects clinic. Before their first appointment, patients completed the European Organization for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire (EORTC QLQ-SURV100). We compared mean scores of the EORTC QLQ-SURV100 scales that were comparable to the scales/items from the EORTC QLQ-C30 questionnaire with norm data for the Danish population and EORTC reference values.

Results: All patients referred to the clinic within its first 2 years were included (n = 247). The mean age was 57 [23–85] years and 74% were females. The most common cancer diagnoses was breast cancer (39%). The five most commonly reported late effects were fatigue (66%), pain (51%), cognitive impairment (53%), sleep problems (42%), and neuropathy (40%). A total of 236 of the patients entering the clinic completed QLQ-SURV100. They reported significantly worse mean scores on all scales compared to the Danish norm population and EORTC reference values for pretreatment cancer patients, p < 0.001. Effect sizes were moderate or large for all scales.

Interpretation: In this study, we collected demographic data and described the late effects presented by the patents referred to the clinic. Moreover, we captured and analyzed the full range of physical, mental, and psychosocial issues using QLQ-SURV100. Patients referred to the Late Effects Clinic (LEC) had a number of late effects and reported a significantly lower health-related quality of life compared to the general Danish population and patients who have just been diagnosed with cancer, suggesting the aim of helping patients suffering from late effects gain a better quality of life is in dire need.

Downloads

Download data is not yet available.

Author Biographies

Lærke Kjær Tolstrup, Department of Oncology, Odense University Hospital, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, Odense Denmark

PhD

Karin B. Dieperink, Department of Oncology, Odense University Hospital, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, Odense Denmark

Professor

Marieke van Leeuwen, Division of Psychosocial Research & Epidemiology, the Netherlands Cancer Institute, Amsterdam, the Netherlands

Phd

Sören Möller, Department of Clinical Research, University of Southern Denmark, Odense Denmark; Open Patient data Explorative Network, Odense University Hospital, Odense C, Denmark

PhD

Linnea Fechner, Department of Oncology, Odense University Hospital, Odense C, Denmark

MSc

Line Helene Clausen, Department of Oncology, Odense University Hospital, Odense C, Denmark

PhD

Thea Otto Mattsson, Department of Oncology, Odense University Hospital, Odense C, Denmark

PhD

References

Emery J, Butow P, Lai-Kwon J, Nekhlyudov L, Rynderman M, Jefford M. Management of common clinical problems experienced by survivors of cancer. Lancet. 2022;399(10334):1537–1550.

https://doi.org/10.1016/S0140-6736(22)00242-2 DOI: https://doi.org/10.1016/S0140-6736(22)00242-2

Klonoff-Cohen H, Polavarapu M. Existence of late-effects instruments for cancer survivors: a systematic review. PLoS One. 2020;15(2):e0229222.

https://doi.org/10.1371/journal.pone.0229222 DOI: https://doi.org/10.1371/journal.pone.0229222

NORDCAN. Association of the Nordic Cancer registries [Internet]. 2023 [cited 06-06-2023]. Available from: file:///C:/Users/tut5di/Downloads/Kraefttilfaelde%202021pdf

Sundhedsdatastyrelsen [Internet]. 2023 [cited 06-07-2023]. Available from: https://www.sst.dk/da/viden/sygdomme/kraeft/rehabilitering-og-palliation-paa-kraeftomraadet/senfoelger-efter-kraeft-hos-voksne

The Danish Health Data Authority. Vidensopsamling på senfølger efter kræft hos voksne [Internet]. [cited 22-01-2024]. Available from: https://www.sst.dk/-/media/Udgivelser/2017/Vidensopsamling-p%C3%A5-senf%C3%B8lger-efter-kr%C3%A6ft-hos-voksne.ashx

The Danish Cancer Society. Kræftpatienters behov og oplevelser med sundhedsvæsenet i opfølgnings- og efterforløbet – Kræftens Bekæmpelses Barometerundersøgelse [Internet]. [cited 22-01-2024]. Available from: https://www.cancer.dk/dyn/resources/File/file/3/8373/1574778638/kraeftens-bekaempelses-barometerundersoegelse-2019.pdf

Firkins J, Hansen L, Driessnack M, Dieckmann N. Quality of life in “chronic” cancer survivors: a meta-analysis. J Cancer Surviv. 2020;14(4):504–517.

https://doi.org/10.1007/s11764-020-00869-9 DOI: https://doi.org/10.1007/s11764-020-00869-9

Jefford M, Howell D, Li Q, Lisy K, Maher J, Alfano CM, et al. Improved models of care for cancer survivors. Lancet. 2022;399(10334):1551–1560.

https://doi.org/10.1016/S0140-6736(22)00306-3 DOI: https://doi.org/10.1016/S0140-6736(22)00306-3

Lisy K, Langdon L, Piper A, Jefford M. Identifying the most prevalent unmet needs of cancer survivors in Australia: a systematic review. Asia Pac J Clin Oncol. 2019;15(5):e68–e78.

https://doi.org/10.1111/ajco.13176 DOI: https://doi.org/10.1111/ajco.13176

Green A, Kim-Godwin YS, Jones CW. Perceptions of spiritual care education, competence, and barriers in providing spiritual care among registered nurses. J Holist Nurs. 2020;38(1):41–51.

https://doi.org/10.1177/0898010119885266 DOI: https://doi.org/10.1177/0898010119885266

Schmidt ME, Goldschmidt S, Hermann S, Steindorf K. Late effects, long-term problems and unmet needs of cancer survivors. Int J Cancer. 2022;151(8):1280–1290.

https://doi.org/10.1002/ijc.34152 DOI: https://doi.org/10.1002/ijc.34152

Kim Y, Carver CS, Ting A. Family caregivers’ unmet needs in long-term cancer survivorship. Semin Oncol Nurs. 2019;35(4):380–383.

https://doi.org/10.1016/j.soncn.2019.06.012 DOI: https://doi.org/10.1016/j.soncn.2019.06.012

de Moor JS, Dowling EC, Ekwueme DU, Guy GP, Jr., Rodriguez J, Virgo KS, et al. Employment implications of informal cancer caregiving. J Cancer Surviv. 2017;11(1):48–57.

https://doi.org/10.1007/s11764-016-0560-5 DOI: https://doi.org/10.1007/s11764-016-0560-5

Boelhouwer IG, Vermeer W, van Vuuren T. Late effects of cancer (treatment) and work ability: guidance by managers and professionals. BMC Public Health. 2021;21(1):1255.

https://doi.org/10.1186/s12889-021-11261-2 DOI: https://doi.org/10.1186/s12889-021-11261-2

Cuschieri S. The STROBE guidelines. Saudi J Anaesth. 2019;13(Suppl 1):S31–S34.

https://doi.org/10.4103/sja.SJA_543_18 DOI: https://doi.org/10.4103/sja.SJA_543_18

van Leeuwen M, Kieffer JM, Young TE, Annunziata MA, Arndt V, Arraras JI, et al. Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire. J Cancer Surviv. 2022;18:634.

https://doi.org/10.1007/s11764-022-01199-8 DOI: https://doi.org/10.1007/s11764-022-01199-8

Nolte S, Liegl G, Petersen MA, Aaronson NK, Costantini A, Fayers PM, et al. General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States. Eur J Cancer. 2019;107:153–163.

https://doi.org/10.1016/j.ejca.2018.11.024 DOI: https://doi.org/10.1016/j.ejca.2018.11.024

Scott NW, Aaronson NK, Bottomley A, Groenvold M, Chad G, Petersen MA, et al. Reference values [Internet]. 2008, p. 1–419 [cited 22-01-24]. Available from: https://www.eortc.org/app/uploads/sites/2/2018/02/reference_values_manual2008.pdf

Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Lawrence Erlbaum Associates, New York. 1988.

StataCorp. Stata Statistical Software: Release 18. College Station, TX: StataCorp LLC; 2023.

Cocks K, King MT, Velikova G, Martyn St-James M, Fayers PM, Brown JM. Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J Clin Oncol. 2011;29(1):89–96.

https://doi.org/10.1200/JCO.2010.28.0107 DOI: https://doi.org/10.1200/JCO.2010.28.0107

The Danish Health Data Authority. Stadig flere lever med kræft i 2020 [Internet]. [cited 22-01-2021]. Available from: https://sundhedsdatastyrelsen.dk/-/media/sds/filer/find-tal-og-analyser/sygdomme-og-behandlinger/kraeft/kraeft_nye_tilfaelde_analyser/flere_lever_kraeft_2020.pdf

Bertakis KD, Azari R, Helms LJ, Callahan EJ, Robbins JA. Gender differences in the utilization of health care services. J Fam Pract. 2000;49(2):147–152.

Thompson AE, Anisimowicz Y, Miedema B, Hogg W, Wodchis WP, Aubrey-Bassler K. The influence of gender and other patient characteristics on health care-seeking behaviour: a QUALICOPC study. BMC Fam Pract. 2016;17(1):38.

https://doi.org/10.1186/s12875-016-0440-0 DOI: https://doi.org/10.1186/s12875-016-0440-0

Handberg C, Lomborg K, Nielsen CV, Oliffe JL, Midtgaard J. Understanding male cancer patients’ barriers to participating in cancer rehabilitation. Eur J Cancer Care (Engl). 2015;24(6):801–811.

https://doi.org/10.1111/ecc.12358 DOI: https://doi.org/10.1111/ecc.12358

Vandraas KF, Smedsland S, Engan HK, Kiserud C, Naume B, Brekke M, et al. Late effects after breast cancer treatment. Tidsskr Nor Laegeforen. 2023;143(11):1–10.

https://doi.org/10.4045/tidsskr.23.0017 DOI: https://doi.org/10.4045/tidsskr.23.0017

Danish Universities [Internet]. [cited 22-01-2024]. Available from: https://dkuni.dk/publikationer-og-notater/notat-uddannelsesniveauet-i-danmark-er-gennemsnitligt

Statistics Denmark [Internet]. [cited 22-01-2024]. Available from: https://www.dst.dk/en/

Hovaldt HB, Suppli NP, Olsen MH, Steding-Jessen M, Hansen DG, Møller H, et al. Who are the cancer survivors? A nationwide study in Denmark, 1943–2010. Br J Cancer. 2015;112(9):1549–1553.

https://doi.org/10.1038/bjc.2015.68 DOI: https://doi.org/10.1038/bjc.2015.68

Reczek C, Thomeer MB, Gebhardt-Kram L, Umberson D. “Go See Somebody”: how spouses promote mental health care. Soc Ment Health. 2020;10(1):80–96.

https://doi.org/10.1177/2156869319834335 DOI: https://doi.org/10.1177/2156869319834335

Ding W, Ruan G, Lin Y, Zhu J, Tu C, Li Z. Dynamic changes in marital status and survival in women with breast cancer: a population-based study. Sci Rep. 2021;11(1):5421.

https://doi.org/10.1038/s41598-021-84996-y DOI: https://doi.org/10.1038/s41598-021-84996-y

Holden CE, Wheelwright S, Harle A, Wagland R. The role of health literacy in cancer care: a mixed studies systematic review. PLoS One. 2021;16(11):e0259815.

https://doi.org/10.1371/journal.pone.0259815 DOI: https://doi.org/10.1371/journal.pone.0259815

Levinsen AKG, Kjaer TK, Thygesen LC, Maltesen T, Jakobsen E, Gögenur I, et al. Social inequality in cancer survivorship: educational differences in health-related quality of life among 27,857 cancer survivors in Denmark. Cancer Med. 2023;12(19):20150–20162.

https://doi.org/10.1002/cam4.6596 DOI: https://doi.org/10.1002/cam4.6596

Spiropoulos A, Deleemans J, Beattie S, Carlson LE. Mothers with cancer: an intersectional mixed-methods study investigating role demands and perceived coping abilities. Cancers (Basel). 2023;15(6):1915.

https://doi.org/10.3390/cancers15061915 DOI: https://doi.org/10.3390/cancers15061915

Inhestern L, Bergelt C. When a mother has cancer: strains and resources of affected families from the mother’s and father’s perspective – a qualitative study. BMC Womens Health. 2018;18(1):72.

https://doi.org/10.1186/s12905-018-0562-8 DOI: https://doi.org/10.1186/s12905-018-0562-8

Skovgaards AS, Mattsson TO, Tolstrup LK. Employment status among cancer survivors in a Late Effects Clinic in Denmark. J Cancer Surviv. 2023.

https://doi.org/10.1007/s11764-023-01496-w DOI: https://doi.org/10.1007/s11764-023-01496-w

Johansen C, von Heymann A, Rafn BS, Borgquist S, Christiansen P, Christensen P, et al. Late effects – the new focus of follow-up. Acta Oncol. 2022;61(10):1163–1164.

https://doi.org/10.1080/0284186X.2022.2137845 DOI: https://doi.org/10.1080/0284186X.2022.2137845

Challinor JM, Alqudimat MR, Teixeira TOA, Oldenmenger WH. Oncology nursing workforce: challenges, solutions, and future strategies. Lancet Oncol. 2020;21(12):e564–e574.

https://doi.org/10.1016/S1470-2045(20)30605-7 DOI: https://doi.org/10.1016/S1470-2045(20)30605-7

Published

2024-06-16

How to Cite

Tolstrup, L. K., Dieperink, K. B., van Leeuwen, M., Möller, S., Fechner, L., Clausen, L. H., & Mattsson, T. O. (2024). Health-Related Quality of Life in Danish Cancer Survivors Referred to a Late Effects Clinic: A Prospective Cohort Study. Acta Oncologica, 63(1), 426–432. https://doi.org/10.2340/1651-226X.2024.39937