Skip to main content
Key Specialties
Anesthesiology Cardiology Dermatology Diabetology Endocrinology Gastroenterology General Medicine Geriatrics Hematology Infectious Diseases Internal Medicine Nephrology Neurology Obstetrics and Gynecology Oncology Ophthalmology Pediatrics Psychiatry Radiology Respiratory Medicine Rheumatology Surgery Urology
Congress Coverage
ASH 2024 Annual Meeting 2024 ESMO Congress 2024 ERS Congress 2024 EASD Congress 2024 ESC Congress 2024 EAN Congress 2024 ASCO Annual Meeting 2024 ACC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on adolescent vaping

LIVE: Wednesday 29th January, 18:00-19:30 CET

Growing numbers of young people are using e-cigarettes, despite warnings of respiratory effects and addiction. How can doctors tackle the epidemic, and what health effects should you prepare to manage in your clinics?
ADVANCED SEARCH
Log in
Top
Supportive Care in Cancer
Published in:

Open Access 09-07-2022 | Cancer of Unknown Primary | Original Article

Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study

Authors: Lisa Guccione, Krista Fisher, Linda Mileshkin, Richard Tothill, David Bowtell, Stephen Quinn, Anna DeFazio, Chris S. Karapetis, Nicholas Wilcken, Madhu Singh, Christopher Steer, Bo Gao, Mark Warren, Ian M. Collins, Narayan Karanth, Cindy Bryant, Penelope Schofield

Published in: Supportive Care in Cancer | Issue 10/2022

Login to get access

Abstract

Objective

This study aimed to determine the healthcare experiences, quality of life, and psychosocial needs of patients with cancer of unknown primary (CUP) early after diagnosis; comparing their experiences to patients with advanced cancer of a known primary (non-CUP control patients) and published general population reference data where available.

Methods

This study was a cross-sectional, multi-site study comparing CUP patients (n = 139) compared to non-CUP controls (n = 45). Demographic, clinical information and patient-reported outcome questionnaire data were collected at baseline.

Results

Differences in healthcare experienced were found between CUP and non-CUP controls with CUP patients reporting higher scores for unmet medical communication/information needs compared with non-CUP control patients (p = 0.013) as well as greater uncertainty in illness (p = 0.042). Whilst no differences were found between CUP and non-CUP controls on the EORTC and PROMIS measures, of those that ‘received written information about your cancer…’ and asked ‘…how useful was it?’ fewer CUP patients reported finding the information useful 40% vs 61%, and more were likely to not have received written information at all 59% vs 32%; (p = 0.002). Additionally, of those that found information about their cancer online, fewer patients with CUP reported finding it useful 32% vs 48% control patients (p = 0.005).

Conclusions

CUP patients have unmet medical communication/information needs and greater uncertainty in illness but do not differ in health-related quality of life domains compared to patients with advanced cancer of a known primary.
Literature
1.
Australian Institute of Health and Welfare, Cancer in Australia 2019. 2019, Australian Institute of Health and Welfare Canberra.
2.
3.
Sporn J, Greenberg B (1993) Empirical chemotherapy for adenocarcinoma of unknown primary tumor site. in Seminars in oncology.
4.
Kim C et al (2018) Survival outcome differences based on treatments used and knowledge of the primary tumour site for patients with cancer of unknown and known primary in Ontario. Curr Oncol 25(5):307PubMedPubMedCentralCrossRef
5.
Carlson LE et al (2010) Screening for distress in lung and breast cancer outpatients: a randomized controlled trial. J Clin Oncol 28(33):4884–4891PubMedCrossRef
6.
Breitbart W et al (2000) Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 284(22):2907–2911PubMedCrossRef
7.
Boyland L, Davis C (2008) Patients’ experiences of carcinoma of unknown primary site: dealing with uncertainty. Palliat Med 22(2):177–183PubMedCrossRef
8.
Hyphantis T et al (2013) Psychiatric manifestations, personality traits and health-related quality of life in cancer of unknown primary site. Psychooncology 22(9):2009–2015PubMedCrossRef
9.
Riihimäki M et al (2013) Comparison of survival of patients with metastases from known versus unknown primaries: survival in metastatic cancer. BMC Cancer 13(1):36PubMedPubMedCentralCrossRef
10.
Wagland R et al (2017) Differences in experiences of care between patients diagnosed with metastatic cancer of known and unknown primaries: mixed-method findings from the 2013 cancer patient experience survey in England. BMJ Open 7(9):e017881PubMedPubMedCentralCrossRef
11.
Pentheroudakis G, Golfinopoulos V, Pavlidis N (2007) Switching benchmarks in cancer of unknown primary: from autopsy to microarray. Eur J Cancer 43(14):2026–2036PubMedCrossRef
12.
Oken MM et al (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5(6):649–655PubMedCrossRef
13.
Aaronson NK et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. JNCI J Natl Cancer Inst 85(5):365–376PubMedCrossRef
14.
Hjermstad MJ et al (1995) Test/retest study of the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire. J Clin Oncol 13(5):1249–1254PubMedCrossRef
15.
Kaasa S et al (1995) The EORTC core quality of life questionnaire (QLQ-C30): validity and reliability when analysed with patients treated with palliative radiotherapy. Eur J Cancer 31(13):2260–2263CrossRef
16.
Rodary C et al (2004) Patient preference for either the EORTC QLQ-C30 or the FACIT Quality Of Life (QOL) measures: a study performed in patients suffering from carcinoma of an unknown primary site (CUP). Eur J Cancer 40(4):521–528PubMedCrossRef
17.
Davda J et al (2021) Assessing the acceptability, reliability, and validity of the EORTC Quality of Life Questionnaire (QLQ-C30) in Kenyan cancer patients: a cross-sectional study. J Patient-Reported Outcomes 5(1):4CrossRef
18.
Garcia SF et al (2007) Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol 25(32):5106–5112PubMedCrossRef
19.
Quach CW et al (2016) Reliability and validity of PROMIS measures administered by telephone interview in a longitudinal localized prostate cancer study. Qual Life Res 25(11):2811–2823PubMedPubMedCentralCrossRef
20.
Mishel M, Epstein D (1997) Uncertainty in illness scales manual. University of North Carolina, Chapel Hill, NC
21.
Mullins LL et al (1997) Illness uncertainty, attributional style, and psychological adjustment in older adolescents and young adults with asthma. J Pediatr Psychol 22(6):871–880PubMedCrossRef
22.
McNulty K, Livneh H, Wilson LM (2004) Perceived uncertainty, spiritual well-being, and psychosocial adaptation in individuals with multiple sclerosis. Rehabil Psychol 49(2):91CrossRef
23.
Carroll DL, Hamilton GA, McGovern BA (1999) Changes in health status and quality of life and the impact of uncertainty in patients who survive life-threatening arrhythmias. Heart Lung: J Acute Crit Care 28(4):251–260CrossRef
24.
Bailey DE Jr et al (2011) Measuring illness uncertainty in men undergoing active surveillance for prostate cancer. Appl Nurs Res 24(4):193–199PubMedCrossRef
25.
Rosenfeld B et al (2011) Assessing hopelessness in terminally ill cancer patients: Development of the Hopelessness Assessment in Illness Questionnaire. Psychol Assess 23(2):325–336PubMedPubMedCentralCrossRef
26.
Rainbird K, Perkins J, Sanson-Fisher R (2005) The needs assessment for advanced cancer patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. A study of validity, reliability and acceptability. Psycho-Oncology J Psychol Soc Behav Dimens Cancer 14(4):297–306
27.
Schofield P et al (2012) Validation of the needs assessment for advanced lung cancer patients (NA-ALCP). Psychooncology 21(4):451–455PubMedCrossRef
28.
Health, D.o., National Cancer Patient Experience Survey 2011/2012. National Report (ed. Health, D.o.) 2012.
29.
Cocks K et al (2011) 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 29(1):89–96PubMedCrossRef
30.
Nolte S et al (2019) 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 107:153–163PubMedCrossRef
31.
Puts M et al (2012) A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer 20(7):1377–1394PubMedCrossRef
32.
33.
Whelan TJ et al (1998) Evaluation of a patient file folder to improve the dissemination of written information materials for cancer patients. Cancer Interdisc Int J Am Cancer Soc 83(8):1620–1625
34.
Hagerty R et al (2004) Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 22(9):1721–1730PubMedCrossRef
35.
Mossman J, Boudioni M, Slevin M (1999) Cancer information: a cost-effective intervention. Eur J Cancer 35(11):1587–1591PubMedCrossRef
36.
Jefford M, Tattersall MH (2002) Informing and involving cancer patients in their own care. Lancet Oncol 3(10):629–637PubMedCrossRef
37.
Wagland R, Bracher M, Ibanez Esqueda A Experiences of care of patients with cancer of unknown primary (CUP): analysis of the 2010, 2011–12 & 2013 Cancer Patient Experience Survey (CPES) England: final report. Southampton, UK, 2015.
38.
Enokida T, Ohyama Y (2012) Treatment of patients with cancer of an unknown primary site. Gan to kagaku ryoho Cancer chemother 39(5):726–730
39.
Greco FA et al (2011) Cancer of unknown primary: progress in the search for improved and rapid diagnosis leading toward superior patient outcomes. Ann Oncol.
40.
Welfare, A.I.o.H.a., Cancer in Australia 2010: in brief. 2010. Cancer serious no. 59(Cat. no. CAN55).
41.
Gustafson D et al (1994) Development and pilot evaluation of a computer-based support system for women with breast cancer. J Psychosoc Oncol 11(4):69–93CrossRef
42.
Klemm P et al (1999) Gender differences on Internet cancer support groups. Comput Nurs 17(2):65–72PubMed
43.
Mishel MH et al (1984) Predictors of psychosocial adjustment in patients newly diagnosed with gynecological cancer. Cancer Nurs 7(4):291–300PubMedCrossRef
44.
Galloway SC, Graydon JE (1996) Uncertainty, symptom distress, and information needs after surgery for cancer of the colon. Cancer Nurs 19(2):112–117PubMedCrossRef
45.
Hagen KB et al (2015) Illness uncertainty in breast cancer patients: validation of the 5-item short form of the Mishel Uncertainty in Illness Scale. Eur J Oncol Nurs 19(2):113–119PubMedCrossRef
46.
Mishel MH (1983) Adjusting the fit: development of uncertainty scales for specific clinical populations. West J Nurs Res 5(4):355–370PubMedCrossRef
47.
Cella D et al (2014) Setting standards for severity of common symptoms in oncology using the PROMIS item banks and expert judgment. Qual Life Res 23(10):2651–2661PubMedPubMedCentralCrossRef
48.
49.
Butow PN et al (2013) Inferior health-related quality of life and psychological well-being in immigrant cancer survivors: a population-based study. Eur J Cancer 49(8):1948–1956PubMedCrossRef
Metadata
Title
Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study
Authors
Lisa Guccione
Krista Fisher
Linda Mileshkin
Richard Tothill
David Bowtell
Stephen Quinn
Anna DeFazio
Chris S. Karapetis
Nicholas Wilcken
Madhu Singh
Christopher Steer
Bo Gao
Mark Warren
Ian M. Collins
Narayan Karanth
Cindy Bryant
Penelope Schofield
Publication date
09-07-2022
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 10/2022
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-022-07228-7

Other articles of this Issue 10/2022

Prevalence and predictors of psychological distress among patients with thyroid cancer during transitional period in China: a cross-sectional study

Correspondence re MASCC evidence-based recommendations for the management of malignant bowel obstruction

  • Correspondence

Development of a functional and psychosocial evaluation toolkit using mixed methodology in a community-based physical activity program for childhood cancer survivors

  • Original Article

Inpatient primary prophylaxis of cancer-associated thromboembolism (CAT)

Confounding factors in the assessment of oral mucositis in head and neck cancer

Diet and exercise advice and referrals for cancer survivors: an integrative review of medical and nursing perspectives

  • Open Access
  • Care
  • Review Article

ASH 2024 Annual Meeting Coverage

inMIND supports tafasitamab addition in follicular lymphoma

Combining tafasitamab with lenalidomide and rituximab significantly improves progression-free survival for patients with relapsed or refractory follicular lymphoma.

Featuring the official presentation video

Read more

Transplantation can be omitted for certain MCL patients

Add-on blinatumomab improves DFS in children with ALL

Promising response to loncastuximab tesirine in lymphoma

» View more highlights on the ASH 2024 hub page

SPONSORED

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

In this webinar, Professor Martin Dreyling and an esteemed international panel of CAR T-cell therapy experts discuss the 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.

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
Watch now
Image Credits