Hostname: page-component-76fb5796d-vvkck Total loading time: 0 Render date: 2024-04-27T22:42:31.144Z Has data issue: false hasContentIssue false

The symptom burden and the assessment of palliative symptoms in patients with metastatic upper gastrointestinal cancer: A qualitative interview study

Published online by Cambridge University Press:  11 October 2023

Maja Sønderup Tarp*
Affiliation:
Department of Surgery, Herlev & Gentofte Hospital, University of Copenhagen, Herlev, Denmark
Jacob Rosenberg
Affiliation:
Department of Surgery, Herlev & Gentofte Hospital, University of Copenhagen, Herlev, Denmark
*
Corresponding author: Maja Sønderup Tarp; Email: maja.soenderup.tarp@regionh.dk

Abstract

Objectives

Patients with metastatic upper gastrointestinal (GI) cancer may experience a large physical symptom burden. However, less is known about existential, social, and psychological symptoms. To provide the patient with palliative care, quality-of-life questionnaires are used for structured needs assessment. These are sporadically implemented, and there seems to be uncertainty to the efficiency of current practice. The aim of study was to explore the experienced assessment-process and treatment of palliative symptoms, as well as the experienced symptom burden, in patients with metastatic upper GI cancer.

Methods

Qualitative, semi-structured interviews were conducted in 10 patients with metastatic upper GI cancer. Data were analyzed using content analysis.

Results

The patients did not expect treatment for all physical symptoms. Existential symptoms revolved around death and dying, social issues were mainly related to family, and psychological issues were based in the continuous dealing with serious illness. Existential, social, and psychological symptoms were mostly not considered part of the expected care when admitted to hospital. Patients had only vague recollections of their experiences with structured needs assessment, and the process had been inconsequential in the treatment of symptoms.

Significance of results

Patients with upper GI cancer experience symptoms related to all 4 areas of palliative care being physical, existential, social, and psychological, but these are differentiated in the way patients perceive their origins and treatability. Structured needs assessment was not routinely carried out, and in cases where this had been done, no follow-up was effectuated. This calls for increased focus and proper implementation for the process to be relevant in the treatment of palliative symptoms.

Type
Original Article
Copyright
© The Author(s), 2023. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Beernaert, K, Deliens, L, De Vleminck, A, et al. (2016) Is there a need for early palliative care in patients with life-limiting illnesses? Interview study with patients about experienced care needs from diagnosis onward. American Journal of Hospice and Palliative Medicine 33(5), 489497. doi:10.1177/1049909115577352CrossRefGoogle Scholar
Beesley, VL, Janda, M, Goldstein, D, et al. (2016) A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services. Psycho-Oncology 25(2), 150157. doi:10.1002/pon.3887CrossRefGoogle ScholarPubMed
Biddle, L, Paramasivan, S, Harris, S, et al. (2016) Patients’ and clinicians’ experiences of holistic needs assessment using a cancer distress thermometer and problem list: A qualitative study. European Journal of Oncology Nursing 23, 5965. doi:10.1016/j.ejon.2016.04.004CrossRefGoogle ScholarPubMed
Bolmsjö, I (2001) Existential issues in palliative care: Interviews of patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine 4(4), 499505. doi:10.1089/109662101753381647CrossRefGoogle ScholarPubMed
Carlson, LE, Waller, A and Mitchell, AJ (2012) Screening for distress and unmet needs in patients with cancer: Review and recommendations. Journal of Clinical Oncology 30(11), 11601177. doi:10.1200/JCO.2011.39.5509CrossRefGoogle Scholar
Deftereos, I, Kiss, N, Isenring, E, et al. (2020) A systematic review of the effect of preoperative nutrition support on nutritional status and treatment outcomes in upper gastrointestinal cancer resection. European Journal of Surgical Oncology 46(8), 14231434. doi:10.1016/j.ejso.2020.04.008CrossRefGoogle ScholarPubMed
Dong, ST, Butow, PN, Tong, A, et al. (2016) Patients’ experiences and perspectives of multiple concurrent symptoms in advanced cancer: A semi-structured interview study. Supportive Care in Cancer 24(3), 13731386. doi:10.1007/s00520-015-2913-4CrossRefGoogle Scholar
Graneheim, UH, Lindgren, BM and Lundman, B (2017) Methodological challenges in qualitative content analysis: A discussion paper. Nurse Education Today 56(June), 2934. doi:10.1016/j.nedt.2017.06.002CrossRefGoogle ScholarPubMed
Greenhalgh, J, Long, AF and Flynn, R (2005) The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science & Medicine 60(4), 833843. doi:10.1016/j.socscimed.2004.06.022CrossRefGoogle ScholarPubMed
Groenvold, M, Petersen, MA, Aaronson, NK, et al. (2006) The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. European Journal of Cancer 42(1), 5564. doi:10.1016/j.ejca.2005.06.022CrossRefGoogle ScholarPubMed
Haraldstad, K, Wahl, A, Andenæs, R, et al. (2019) A systematic review of quality of life research in medicine and health sciences. Quality of Life Research 28(10), 26412650. doi:10.1007/s11136-019-02214-9CrossRefGoogle ScholarPubMed
Hui, D, Park, M, Shamieh, O, et al. (2016) Personalized symptom goals and response in patients with advanced cancer. Cancer 122(11), 17741781. doi:10.1002/cncr.29970CrossRefGoogle ScholarPubMed
Johnsen, AT, Petersen, MA, Pedersen, L, et al. (2013) Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems. Psycho-Oncology 22(8), 17241730. doi:10.1002/pon.3204CrossRefGoogle Scholar
Johnston, L, Young, J, Campbell, K, et al. (2019) The implementation and impact of Holistic Needs Assessments for people affected by cancer: A systematic review and thematic synthesis of the literature. European Journal of Cancer Care 28(3), . doi:10.1111/ecc.13087CrossRefGoogle Scholar
Karlsson, M, Friberg, F, Wallengren, C, et al. (2014) Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: A life-world phenomenological study. BMC Palliative Care 13(1), . doi:10.1186/1472-684X-13-28CrossRefGoogle ScholarPubMed
Kouzy, R, Abi Jaoude, J, Lin, D, et al. (2020) Patient-reported outcome measures in pancreatic cancer receiving radiotherapy. Cancers 12(9), 115. doi:10.3390/cancers12092487CrossRefGoogle ScholarPubMed
LeMay, K and Wilson, KG (2008) Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review 28(3), 472493. doi:10.1016/j.cpr.2007.07.013CrossRefGoogle ScholarPubMed
Maharaj, AD, Holland, JF, Scarborough, RO, et al. (2019) The Upper Gastrointestinal Cancer Registry (UGICR): A clinical quality registry to monitor and improve care in upper gastrointestinal cancers. BMJ Open 9(9), 111. doi:10.1136/bmjopen-2019-031434CrossRefGoogle Scholar
Malterud, K (2011) Kvalitative Metoder I Medisinsk Forskning: en Innføring, 3rd edn. Oslo: Universitetsforlaget.Google Scholar
Merchant, SJ, Brogly, SB, Booth, CM, et al. (2019) Palliative care and symptom burden in the last year of life: A population-based study of patients with gastrointestinal cancer. Annals of Surgical Oncology 26(8), 23362345. doi:10.1245/s10434-019-07320-zCrossRefGoogle ScholarPubMed
Rattner, M (2021) Increasing our understanding of nonphysical suffering within palliative care: A scoping review. Palliative & Supportive Care 20(3), 417432.CrossRefGoogle Scholar
Region Hovedstaden (2014). Rehabilitering og Palliation ved kræft. Region Hovedsatden, 1014.Google Scholar
Ripamonti, CI, Giuntoli, F, Gonella, S, et al. (2018) Spiritual care in cancer patients: A need or an option? Current Opinion in Oncology 30(4), 212218. doi:10.1097/CCO.0000000000000454CrossRefGoogle ScholarPubMed
Selman, LE, Brighton, LJ, Sinclair, S, et al. (2018) Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries. Palliative Medicine 32(1), 216230. doi:10.1177/0269216317734954CrossRefGoogle Scholar
Seow, H, Sussman, J, Martelli-Reid, L, et al. (2012) Do high symptom scores trigger clinical actions? An audit after implementing electronic symptom screening. Journal of Oncology Practice 8(6), e142e148. doi:10.1200/JOP.2011.000525CrossRefGoogle ScholarPubMed
Sommerbakk, R, Haugen, DF, Tjora, A, et al. (2016) Barriers to and facilitators for implementing quality improvements in palliative care – Results from a qualitative interview study in Norway. BMC Palliative Care 15(1), 117. doi:10.1186/s12904-016-0132-5CrossRefGoogle ScholarPubMed
Strömgren, A, Groenvold, M, Pedersen, L, et al. (2002) Symptomatology of cancer patients in palliative care. European Journal of Cancer 38(6), 788794. doi:10.1016/S0959-8049(01)00470-1CrossRefGoogle ScholarPubMed
Sundhedsstyrelsen (2012) Notat Vedr. valg af redskab til den overordnede behovsvur- dering ved rehabilitering og palliation i forbindelse med kræftsygdomme. Sundhedsstyrelsen.Google Scholar
Tarp, MS, Danielsen, AK and Rosenberg, J (2023) Symptom burden and the illness trajectory in patients with metastatic upper gastrointestinal cancer. Danish Medical Journal 70(2), 110.Google Scholar
Tong, A, Sainsbury, P and Craig, J (2007) Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6), 349357. doi:10.1093/intqhc/mzm042CrossRefGoogle ScholarPubMed
Uitdehaag, MJ, Verschuur, EML, van Eijck, CHJ, et al. (2015) Problems and needs in patients with incurable esophageal and pancreaticobiliary cancer: A descriptive study. Gastroenterology Nursing 38(1), 4254. doi:10.1097/SGA.0000000000000088CrossRefGoogle ScholarPubMed
Wen, F-H, Chen, J-S, Chou, W-C, et al. (2018) Quality of life and psychological distress are differentially associated with distinct symptom-functional states in terminally ill cancer patients’ last year of life. Psycho-Oncology 27(9), 21112118. doi:10.1002/pon.4775CrossRefGoogle ScholarPubMed
World Health Organization (2021) Assessing the Development of Palliative Care Worldwide: A Set of Actionable Indicators. Geneva: World Health Organization, 12.Google Scholar
Supplementary material: File

Sønderup Tarp and Rosenberg supplementary material

Sønderup Tarp and Rosenberg supplementary material
Download Sønderup Tarp and Rosenberg supplementary material(File)
File 30.3 KB