Health-related quality of life, needs, and concerns among cancer survivors referred to rehabilitation in primary healthcare setting

Authors

  • Mette T. Sandager Copenhagen Centre for Cancer and Health, Municipality of Copenhagen, Copenhagen, Denmark https://orcid.org/0000-0001-9609-6577
  • Sine Rossen Copenhagen Centre for Cancer and Health, Municipality of Copenhagen, Copenhagen, Denmark https://orcid.org/0000-0003-0006-7216
  • Dorte T. Hofland Copenhagen Centre for Cancer and Health, Municipality of Copenhagen, Copenhagen, Denmark
  • Claus V. Nielsen Department of Public Health, Aarhus University, Aarhus, Denmark; DEFACTUM Central Denmark Region, Aarhus, Denmark; Social Medicine and Rehabilitation, Region Hospital Goedstrup, Denmark https://orcid.org/0000-0002-2467-1103
  • Thomas Maribo Department of Public Health, Aarhus University, Aarhus, Denmark; DEFACTUM Central Denmark Region, Aarhus, Denmark https://orcid.org/0000-0003-0856-6837

DOI:

https://doi.org/10.2340/1651-226X.2024.19636

Keywords:

Cancer rehabilitation, health-related quality of life, patient-reported outcomes, functional assessment of cancer therapy-general, International Classification of Functioning, Disability and Health, holistic rehabilitation

Abstract

Background and purpose: There is a growing need for rehabilitation services beyond hospitals. This study aims to describe challenges faced by cancer survivors (CSs) referred for rehabilitation in primary healthcare, employing standardized scales measuring health-related quality of life (HRQOL) and open-ended questions. Furthermore, the study explores the applicability of patient-reported outcomes (PROs) in comprehensively understanding challenges encountered by CSs.

Material and methods: This cross-sectional study involves CSs referred for cancer rehabilitation in a primary healthcare setting, including those participating in PROs as a part of routine practice. HRQOL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G). The International Classification of Functioning, Disability and Health (ICF) framed the analysis of responses to open-ended questions ‘what concerns you the most?’ and ‘what matters to you?’ 

Results: FACT-G showed the lowest scores for functional well-being (14.4) and emotional well-being (16.6), with higher scores for physical well-being (18.9) and social/family well-being (21.1). Responses to open-ended questions unveiled worries about everyday life and how cancer will impact family well-being presently and in the future. Furthermore, CSs reported a need to maintain normality and proactively address the challenges posed by the disease.

Interpretation: CSs referred for rehabilitation in primary healthcare experience comprehensive challenges necessitating a holistic rehabilitation approach. This includes interventions supporting CSs in dealing with uncertainty, regaining a sense of control, and addressing family well-being concerns. When using PROs for need assessment, the combination of validated HRQOL scales and open-ended questions is crucial for an in-depth understanding of CSs’ challenges.

Downloads

Download data is not yet available.

References

Global Burden of Disease Cancer Collaboration, Fitzmaurice C, Abate D, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 29 cancer groups, 1990 to 2017: a systematic analysis for the global burden of disease study. JAMA Oncol. 2019;5(12):1749–68.

Miller KD, Nogueira L, Mariotto AB, et al. Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin. 2019;69(5):363–85. https://doi.org/10.3322/caac.21565 DOI: https://doi.org/10.3322/caac.21565

Kline RM, Arora NK, Bradley CJ, et al. Long-term survivorship care after cancer treatment – summary of a 2017 national cancer policy forum workshop. J Natl Cancer Inst. 2018;110(12):1300–10. https://doi.org/10.1093/jnci/djy176 DOI: https://doi.org/10.1093/jnci/djy176

Stein KD, Syrjala KL, Andrykowski MA. Physical and psychological long-term and late effects of cancer. Cancer. 2008;112(11 Suppl):2577–92. https://doi.org/10.1002/cncr.23448 DOI: https://doi.org/10.1002/cncr.23448

From cancer patient to cancer survivor: lost in transition [Internet]. Washington, DC: National Academies Press; 2005 [cited 18-09-2023]. Available from: http://www.nap.edu/catalog/11468

Stout NL, Santa Mina D, Lyons KD, Robb K, Silver JK. A systematic review of rehabilitation and exercise recommendations in oncology guidelines. CA Cancer J Clin. 2021;71(2):149–75. https://doi.org/10.3322/caac.21639 DOI: https://doi.org/10.3322/caac.21639

Kudre D, Chen Z, Richard A, et al. Multidisciplinary outpatient cancer rehabilitation can improve cancer patients’ physical and psychosocial status – a systematic review. Curr Oncol Rep. 2020;22(12):122. https://doi.org/10.1007/s11912-020-00979-8 DOI: https://doi.org/10.1007/s11912-020-00979-8

World Health Organization. Rehabilitation [Internet]. [cited 04-01-2024]. Available from: https://www.who.int/news-room/fact-sheets/detail/rehabilitation

Miroševič Š, Prins JB, Selič P, Zaletel Kragelj L, Klemenc Ketiš Z. Prevalence and factors associated with unmet needs in post-treatment cancer survivors: a systematic review. Eur J Cancer Care (Engl). 2019;28(3):e13060. https://doi.org/10.1111/ecc.13060 DOI: https://doi.org/10.1111/ecc.13060

Thorsen L, Gjerset GM, Loge JH, et al. Cancer patients’ needs for rehabilitation services. Acta Oncol. 2011;50(2):212–22. https://doi.org/10.3109/0284186X.2010.531050 DOI: https://doi.org/10.3109/0284186X.2010.531050

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):e68–78. https://doi.org/10.1111/ajco.13176 DOI: https://doi.org/10.1111/ajco.13176

Licht T, Nickels A, Rumpold G, Holzner B, Riedl D. Evaluation by electronic patient-reported outcomes of cancer survivors’ needs and the efficacy of inpatient cancer rehabilitation in different tumor entities. Support Care Cancer. 2021;29(10):5853–64. https://doi.org/10.1007/s00520-021-06123-x DOI: https://doi.org/10.1007/s00520-021-06123-x

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. https://doi.org/10.2190/PM.40.2.c DOI: https://doi.org/10.2190/PM.40.2.c

Weldring T, Smith SMS. Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). Health Serv Insights. 2013;6:61–8. https://doi.org/10.4137/HSI.S11093 DOI: https://doi.org/10.4137/HSI.S11093

Smith TG, Castro KM, Troeschel AN, et al. The rationale for patient-reported outcomes surveillance in cancer and a reproducible method for achieving it. Cancer. 2016;122(3):344–51. https://doi.org/10.1002/cncr.29767 DOI: https://doi.org/10.1002/cncr.29767

Vrangbæk K. Denmark, international health care system profiles [Internet]. 2020 [cited 28-06-2023]. Available from: https://www.commonwealthfund.org/international-health-policy-center/countries/denmark

Mikkelsen TB, Vind AB. Cancer rehabilitation in Denmark 2021 – rehabilitation in municipalities in the five regions of Denmark (Kommunal kræftrehabilitering i Danmark 2021. Kommunale indsatser fordelt pr. region) [Internet]. Vol. 2022. Available from: https://www.rehpa.dk/wp-content/uploads/2022/10/Kommunal-Kraeftrehabilitering-i-Danmark-2021-Kommuale-indsatser-fordelt-pr.-region.pdf [cited ited 16-02-24]

Cella DF, Tulsky DS, Gray G, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9. https://doi.org/10.1200/JCO.1993.11.3.570 DOI: https://doi.org/10.1200/JCO.1993.11.3.570

FACIT measures & searchable library [Internet]. [cited 19-09-2023]. Available from: https://www.facit.org/facit-measures-searchable-library

Eton DT, Cella D, Yost KJ, et al. A combination of distribution- and anchor-based approaches determined minimally important differences (MIDs) for four endpoints in a breast cancer scale. J Clin Epidemiol. 2004;57(9):898–910. https://doi.org/10.1016/j.jclinepi.2004.01.012 DOI: https://doi.org/10.1016/j.jclinepi.2004.01.012

World Health Organisation. International Classification of Functioning, Disability and Health (ICF) [Internet]. [cited 18-09-2023]. Available from: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health

Leonardi M, Lee H, Kostanjsek N, et al. 20 years of ICF-International Classification of Functioning, Disability and Health: uses and applications around the world. Int J Environ Res Public Health. 2022;19(18):11321. https://doi.org/10.3390/ijerph191811321 DOI: https://doi.org/10.3390/ijerph191811321

Riis-Djernæs LM, Jensen CM, Madsen E, Maribo T. Should rehabilitation goals reflect all aspects of functioning in relation to a biopsychosocial ICF perspective? Disabil Rehabil. 2021;43(12):1669–74. https://doi.org/10.1080/09638288.2019.1672108 DOI: https://doi.org/10.1080/09638288.2019.1672108

Cieza A, Fayed N, Bickenbach J, Prodinger B. Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil. 2019;41(5):574–83. https://doi.org/10.3109/09638288.2016.1145258 DOI: https://doi.org/10.3109/09638288.2016.1145258

Holzner B, Kemmler G, Cella D, et al. Normative data for functional assessment of cancer therapy – general scale and its use for the interpretation of quality of life scores in cancer survivors. Acta Oncol. 2004;43(2):153–60. https://doi.org/10.1080/02841860310023453 DOI: https://doi.org/10.1080/02841860310023453

Jabari CE, Nawajah I, Jabareen H. FACT-G assessment of the quality of life for Palestinian patients with cancer. Qatar Med J. 2022;2022(3):43. https://doi.org/10.5339/qmj.2022.43 DOI: https://doi.org/10.5339/qmj.2022.43

Meiklejohn JA, Heesch KC, Janda M, Hayes SC. How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia. Support Care Cancer. 2013;21(2):459–66. https://doi.org/10.1007/s00520-012-1534-4 DOI: https://doi.org/10.1007/s00520-012-1534-4

Sterba KR, Zapka J, Gore EI, et al. Exploring dimensions of coping in advanced colorectal cancer: implications for patient-centered care. J Psychosoc Oncol. 2013;31(5):517–39. https://doi.org/10.1080/07347332.2013.822049 DOI: https://doi.org/10.1080/07347332.2013.822049

LeBlanc TW, Abernethy AP. Patient-reported outcomes in cancer care—hearing the patient voice at greater volume. Nat Rev Clin Oncol. 2017;14(12):763–72. https://doi.org/10.1038/nrclinonc.2017.153 DOI: https://doi.org/10.1038/nrclinonc.2017.153

Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res. 2013;13:211. https://doi.org/10.1186/1472-6963-13-211 DOI: https://doi.org/10.1186/1472-6963-13-211

Howell D, Molloy S, Wilkinson K, et al. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Ann Oncol. 2015;26(9):1846–58. https://doi.org/10.1093/annonc/mdv181 DOI: https://doi.org/10.1093/annonc/mdv181

Homsi J, Walsh D, Rivera N, et al. Symptom evaluation in palliative medicine: patient report vs systematic assessment. Support Care Cancer. 2006;14(5):444–53. https://doi.org/10.1007/s00520-005-0009-2 DOI: https://doi.org/10.1007/s00520-005-0009-2

Strömgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer. 2002;38(6):788–94. https://doi.org/10.1016/S0959-8049(01)00470-1 DOI: https://doi.org/10.1016/S0959-8049(01)00470-1

Ibsen C, Schiøttz-Christensen B, Maribo T, Nielsen CV, Hørder M, Handberg C. ‘Keep it simple’: perspectives of patients with low back pain on how to qualify a patient-centred consultation using patient-reported outcomes. Musculoskeletal Care. 2019;17(4):313–26. https://doi.org/10.1002/msc.1417 DOI: https://doi.org/10.1002/msc.1417

Handberg C, Maribo T. Why cancer survivorship care needs assessment may lead to no clear patient pathway – based on patients’ experiences and perspectives. Eur J Oncol Nurs. 2020;48:101824. https://doi.org/10.1016/j.ejon.2020.101824 DOI: https://doi.org/10.1016/j.ejon.2020.101824

Oksbjerg Dalton S, Halgren Olsen M, Moustsen IR, Wedell Andersen C, Vibe-Petersen J, Johansen C. Socioeconomic position, referral and attendance to rehabilitation after a cancer diagnosis: a population-based study in Copenhagen, Denmark 2010–2015. Acta Oncol. 2019;58(5):730–6. https://doi.org/10.1080/0284186X.2019.1582800 DOI: https://doi.org/10.1080/0284186X.2019.1582800

Additional Files

Published

2024-03-14

How to Cite

Sandager, M. T., Rossen, S., Hofland, D. T., Nielsen, C. V., & Maribo, T. (2024). Health-related quality of life, needs, and concerns among cancer survivors referred to rehabilitation in primary healthcare setting. Acta Oncologica, 63(1), 76–82. https://doi.org/10.2340/1651-226X.2024.19636