Patient reported experiences of health care, quality of life and preoperative information in colon cancer

Authors

  • Maria Reinwalds Department of Surgery, SSORG – Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Region Västra Götaland, Sahlgrenska University Hospital/Östra, Department of Surgery, Gothenburg, Sweden https://orcid.org/0000-0002-4465-4343
  • Charlotta Larsson Department of Surgery, SSORG – Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Region Västra Götaland, Sahlgrenska University Hospital/Östra, Department of Surgery, Gothenburg, Sweden https://orcid.org/0000-0001-8871-7783
  • Rode Grönkvist Department of Surgery, SSORG – Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; School of Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden https://orcid.org/0009-0007-3704-4268
  • Eva Angenete Department of Surgery, SSORG – Scandinavian Surgical Outcomes Research Group, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Region Västra Götaland, Sahlgrenska University Hospital/Östra, Department of Surgery, Gothenburg, Sweden https://orcid.org/0000-0001-9966-4904

DOI:

https://doi.org/10.2340/1651-226X.2024.40933

Keywords:

Colon cancer, quality of life, information, health care encounters, patient experiences, PREM

Abstract

Background and purpose: Cancer may create problems and needs associated with impaired quality of life (QoL). The first health care encounter is important to enable patients to cope and may ultimately impact QoL. The aim of this study was to describe the patients’ experiences of encounters with health care professionals. Another aim was to explore the possible impact that the encounters may have on QoL 1 year after a colon cancer diagnosis. We also wanted to investigate whether patients had received information about treatment related side-effects.

Patients and methods: This substudy within the QoLiCOL (Quality of Life in COLon cancer) study included 1687 patients (male n = 876, female n = 811, mean age 71) between 2015 and 2019. Questionnaires were answered at diagnosis and after 1 year. QoL was self-assessed with a seven-point Likert scale. Analyses were performed using descriptive statistics and ordinal logistic regression.

Results: A total of 1,550 patients (91.9%) reported feeling well received by health care professionals. We found no statistically significant association with QoL. Patients (87%) reported feeling well informed about their treatment, but few patients recalled having received information regarding potential side effects on bowel or sexual function.

Interpretation: Patients with colon cancer generally had a positive experience of the encounter with health care where they felt both well received and well informed. However, the amount of relevant information received was scarce. This indicates that it may be difficult to identify whether patients are properly informed prior to treatment for colon cancer only by asking if they feel well informed.

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References

The Confederation of Regional Cancer Centres. The National Clinical Cancer Care Guidelines for colorectal cancer; version 3.1. [Internet]. Stockholm: The Confederation of Regional Cancer Centres; 2023. [cited 2023-05-25]. Available at: https://kunskapsbanken.cancercentrum.se/diagnoser/tjock-och-andtarmscancer/vardprogram/

Jordan K, Aapro M, Kaasa S, Ripamonti CI, Scotté F, Strasser F, et al. European Society for Medical Oncology (ESMO) position paper on supportive and palliative care. Ann Oncol. 2018;29(1):36–43.

https://doi.org/10.1093/annonc/mdx757 DOI: https://doi.org/10.1093/annonc/mdx757

Russell L, Gough K, Drosdowsky A, Schofield P, Aranda S, Butow PN, et al. Psychological distress, quality of life, symptoms and unmet needs of colorectal cancer survivors near the end of treatment. J Cancer Surviv. 2015;9(3):462–70.

https://doi.org/10.1007/s11764-014-0422-y DOI: https://doi.org/10.1007/s11764-014-0422-y

Dunn J, Lynch B, Rinaldis M, Pakenham K, McPherson L, Owen N, et al. Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients. Psychooncology. 2006;15(1):20–30.

https://doi.org/10.1002/pon.919 DOI: https://doi.org/10.1002/pon.919

Cochrane A, Woods S, Dunne S, Gallagher P. Unmet supportive care needs associated with quality of life for people with lung cancer: a systematic review of the evidence 2007–2020. Eur J Cancer Care (Engl). 2022;31(1):e13525.

https://doi.org/10.1111/ecc.13525 DOI: https://doi.org/10.1111/ecc.13525

Sjövall A, Lagergren P, Johar A, Buchli C. Quality of life and patient reported symptoms after colorectal cancer in a Swedish population. Colorectal Dis. 2023;25(2):191–201.

https://doi.org/10.1111/codi.16332 DOI: https://doi.org/10.1111/codi.16332

World Health Organization. WHO global strategy on people-centered and integrated healthservices. Interim report. World Health Organization; 2015, Geneva, Switzerland.

Ekman N, Moons P, Taft C, Boström E, Fors A. Observable indicators of person-centred care: an interview study with patients, relatives and professionals. BMJ Open. 2022;12(4):e059308.

https://doi.org/10.1136/bmjopen-2021-059308 DOI: https://doi.org/10.1136/bmjopen-2021-059308

Moene M, Bergbom I, Skott C. Patients’ existential situation prior to colorectal surgery. J Adv Nurs. 2006;54(2):199–207.

https://doi.org/10.1111/j.1365-2648.2006.03800.x DOI: https://doi.org/10.1111/j.1365-2648.2006.03800.x

Hillen MA, de Haes HC, Smets EM. Cancer patients’ trust in their physician – a review. Psychooncology. 2011;20(3):227–41.

https://doi.org/10.1002/pon.1745 DOI: https://doi.org/10.1002/pon.1745

Collet R, Major M, van Egmond M, van der Leeden M, Maccow R, Eskes A, et al. Experiences of interaction between people with cancer and their healthcare professionals: a systematic review and meta-synthesis of qualitative studies. Eur J Oncol Nurs. 2022;60:102198.

https://doi.org/10.1016/j.ejon.2022.102198 DOI: https://doi.org/10.1016/j.ejon.2022.102198

Ernstmann N, Wirtz M, Nitzsche A, Gross SE, Ansmann L, Gloede TD, et al. Patients’ Trust in physician, patient enablement, and health-related quality of life during colon cancer treatment. J Cancer Educ. 2017;32(3):571–9.

https://doi.org/10.1007/s13187-017-1166-y DOI: https://doi.org/10.1007/s13187-017-1166-y

Abelson JS, Chait A, Shen MJ, Charlson M, Dickerman A, Yeo H. Coping strategies among colorectal cancer patients undergoing surgery and the role of the surgeon in mitigating distress: a qualitative study. Surgery. 2019;165(2):461–8.

https://doi.org/10.1016/j.surg.2018.06.005 DOI: https://doi.org/10.1016/j.surg.2018.06.005

Appleton L, Poole H, Wall C. Being in safe hands: patients’ perceptions of how cancer services may support psychological well-being. J Adv Nurs. 2018;74(7):1531–43.

https://doi.org/10.1111/jan.13553 DOI: https://doi.org/10.1111/jan.13553

Mollica MA, Enewold LR, Lines LM, Halpern MT, Schumacher JR, Hays RD, et al. Examining colorectal cancer survivors’ surveillance patterns and experiences of care: a SEER-CAHPS study. Cancer Causes Contr. 2017;28(10):1133–41.

https://doi.org/10.1007/s10552-017-0947-2 DOI: https://doi.org/10.1007/s10552-017-0947-2

Lee S, Groß SE, Pfaff H, Dresen A. Waiting time, communication quality, and patient satisfaction: an analysis of moderating influences on the relationship between perceived waiting time and the satisfaction of breast cancer patients during their inpatient stay. Patient Educ Couns. 2020;103(4):819–25.

https://doi.org/10.1016/j.pec.2019.11.018 DOI: https://doi.org/10.1016/j.pec.2019.11.018

Hjörleifsdóttir E, Hallberg IR, Gunnarsdóttir ED, Bolmsjö IA. Living with cancer and perception of care: icelandic oncology outpatients, a qualitative study. Support Care Cancer. 2008;16(5):515–24.

https://doi.org/10.1007/s00520-007-0333-9 DOI: https://doi.org/10.1007/s00520-007-0333-9

Hultstrand Ahlin C, Hörnsten Å, Coe AB, Lilja M, Hajdarevic S. Wishing to be perceived as a capable and resourceful person – a qualitative study of melanoma patients’ experiences of the contact and interaction with healthcare professionals. J Clin Nurs. 2019;28(7–8):1223–32. DOI: https://doi.org/10.1111/jocn.14730

https://doi.org/10.1111/codi.13836

Walming S, Block M, Bock D, Angenete E. Timely access to care in the treatment of rectal cancer and the effect on quality of life. Colorectal Dis. 2018;20(2):126–33.

https://doi.org/10.1111/codi.13836 DOI: https://doi.org/10.1111/codi.13836

Månsson A, Henningsohn L, Steineck G, Månsson W. Neutral third party versus treating institution for evaluating quality of life after radical cystectomy. Eur Urol. 2004;46(2):195–9.

https://doi.org/10.1016/j.eururo.2004.04.010 DOI: https://doi.org/10.1016/j.eururo.2004.04.010

Moberger P, Sköldberg F, Birgisson H. Evaluation of the Swedish Colorectal Cancer Registry: an overview of completeness, timeliness, comparability and validity. Acta Oncol. 2018;57(12):1611–21.

https://doi.org/10.1080/0284186X.2018.1529425 DOI: https://doi.org/10.1080/0284186X.2018.1529425

Klein MF, Gögenur I, Ingeholm P, Njor SH, Iversen LH, Emmertsen KJ. Validation of the Danish Colorectal Cancer Group (DCCG.dk) database – on behalf of the Danish Colorectal Cancer Group. Colorectal Dis. 2020;22(12):2057–67.

https://doi.org/10.1111/codi.15352 DOI: https://doi.org/10.1111/codi.15352

Fava GA, Tomba E, Sonino N. Clinimetrics: the science of clinical measurements. Int J Clin Pract. 2012;66(1):11–5.

https://doi.org/10.1111/j.1742-1241.2011.02825.x DOI: https://doi.org/10.1111/j.1742-1241.2011.02825.x

Omerov P, Steineck G, Runeson B, Christensson A, Kreicbergs U, Pettersén R, et al. Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden. Crisis. 2013;34(3):200–10.

https://doi.org/10.1027/0227-5910/a000175 DOI: https://doi.org/10.1027/0227-5910/a000175

Steineck G, Helgesen F, Adolfsson J, Dickman PW, Johansson JE, Norlén BJ, et al. Quality of life after radical prostatectomy or watchful waiting. N Engl J Med. 2002;347(11):790–6.

https://doi.org/10.1056/NEJMoa021483 DOI: https://doi.org/10.1056/NEJMoa021483

Steineck G, Bergmark K, Henningsohn L, al-Abany M, Dickman PW, Helgason A. Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncol. 2002;41(3):244–52.

https://doi.org/10.1080/02841860260088782 DOI: https://doi.org/10.1080/02841860260088782

Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med. 1993;36(6):725–33.

https://doi.org/10.1016/0277-9536(93)90033-Z DOI: https://doi.org/10.1016/0277-9536(93)90033-Z

Asplund D, Bisgaard T, Bock D, Burcharth J, González E, Haglind E, et al. Pretreatment quality of life in patients with rectal cancer is associated with intrusive thoughts and sense of coherence. Int J Colorectal Dis. 2017;32(11):1639–47.

https://doi.org/10.1007/s00384-017-2900-y DOI: https://doi.org/10.1007/s00384-017-2900-y

Azur MJ, Stuart EA, Frangakis C, Leaf PJ. Multiple imputation by chained equations: what is it and how does it work? Int J Methods Psychiatr Res. 2011;20(1):40–9.

https://doi.org/10.1002/mpr.329 DOI: https://doi.org/10.1002/mpr.329

van Buuren S, Groothuis-Oudshoorn K. mice: multivariate imputation by chained equations in R. J Stat Soft. 2011;45(3):1–67.

https://doi.org/10.18637/jss.v045.i03 DOI: https://doi.org/10.18637/jss.v045.i03

Team RC. R: A language and enviroment for statistical computing [Internet]. 4.3.3 ed. R Foundation for Statistical Computing; 2024. Available from: https://www.r-project.org/

Walming S, Asplund D, Block M, Bock D, Gonzalez E, Rosander C, et al. Patients with rectal cancer are satisfied with in-hospital communication despite insufficient information regarding treatment alternatives and potential side-effects. Acta Oncol. 2018;57(10):1311–7.

https://doi.org/10.1080/0284186X.2018.1484158 DOI: https://doi.org/10.1080/0284186X.2018.1484158

Jacobsen SK, Bouchard GM, Emed J, Lepage K, Cook E. Experiences of “Being Known” by the healthcare team of young adult patients with cancer. Oncol Nurs Forum. 2015;42(3):250–6.

https://doi.org/10.1188/15.ONF.250-256 DOI: https://doi.org/10.1188/15.ONF.250-256

Eriksen KS, Lode K, Husebø SIE, Kørner H. Exploring variables affecting sense of coherence and social support in recovery after colorectal cancer surgery among the oldest old. Geriatr Nurs. 2022;47:81–6.

https://doi.org/10.1016/j.gerinurse.2022.06.008 DOI: https://doi.org/10.1016/j.gerinurse.2022.06.008

Islind AS, Johansson V, Vallo Hult H, Alsén P, Andreasson E, Angenete E, et al. Individualized blended care for patients with colorectal cancer: the patient’s view on informational support. Support Care Cancer. 2021;29(6):3061–7.

https://doi.org/10.1007/s00520-020-05810-5 DOI: https://doi.org/10.1007/s00520-020-05810-5

Additional Files

Published

2024-11-14

How to Cite

Reinwalds, M., Larsson, C., Grönkvist, R., & Angenete, E. (2024). Patient reported experiences of health care, quality of life and preoperative information in colon cancer. Acta Oncologica, 63(1), 893–900. https://doi.org/10.2340/1651-226X.2024.40933