Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-26T15:31:29.406Z Has data issue: false hasContentIssue false
  • English
  • Français

Symptoms experienced by cancer patients during the first year from diagnosis: Patient and informal caregiver ratings and agreement

Published online by Cambridge University Press:  27 September 2010

Alexander Molassiotis ,
Y. Zheng ,
L. Denton-Cardew ,
R. Swindell  and
L. Brunton
Alexander Molassiotis*
Affiliation:
School of Nursing, Midwifery, and Social Work, University of Manchester, Manchester, United Kingdom
Y. Zheng
Affiliation:
Medical School, University of Manchester, Manchester, United Kingdom
L. Denton-Cardew
Affiliation:
Medical School, University of Manchester, Manchester, United Kingdom
R. Swindell
Affiliation:
Christie Hospital NHS Foundation Trust, Manchester, Manchester, United Kingdom
L. Brunton
Affiliation:
School of Nursing, Midwifery, and Social Work, University of Manchester, Manchester, United Kingdom
*
Address correspondence and reprint requests to: Alexander Molassiotis, Department of Cancer and Supportive Care, University of Manchester School of Nursing, Midwifery, and Social Work, University Place, Manchester, M13 9PL, United Kingdom. E-mail: alex.molassiotis@manchester.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.

Method:

This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.

Results:

The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.

Significance of results:

More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.

Keywords

SymptomsCancerDistressInformal caregiversSymptom congruence
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 3 , September 2010 , pp. 313 - 324
Copyright
Copyright © Cambridge University Press 2010

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

REFERENCES

Ashbury, F.D., Findlay, H., Reynolds, B., et al. , (1998) A Canadian survey of cancer patients' experiences: Are their needs being met? Journal of Pain and Symptom Management, 16, 298–307.CrossRefGoogle ScholarPubMed
Atkinson, A., Barsevick, A. & Cella, D. (2000). National comprehensive network. NCCN practice guidelines for cancer-related fatigue. Oncology, 14, 151–161.Google Scholar
Boehmke, M.M. (2004). Measurement of symptom distress in women with early-stage breast cancer. Cancer Nursing, 27, 144–152.CrossRefGoogle ScholarPubMed
Broberger, E., Tishelman, C. & Von Essen, L. (2005). Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress. Journal of Pain and Symptom Management, 29, 572–583.CrossRefGoogle ScholarPubMed
Chang, V.T., Hwang, S.S., Feuerman, M., et al. (2000). Symptom and quality of life survey of medical oncology patients at a veterans affairs medical center: A role of symptom assessment. Cancer, 88, 1175–1183.3.0.CO;2-N>CrossRefGoogle Scholar
Cooley, M.E., Short, T.H. & Moriarty, H.J. (2003). Symptom prevalence, distress, and change over time in adults receiving treatment for lung cancer. Psycho-Oncology, 12, 694–708.CrossRefGoogle ScholarPubMed
Degner, L.F. & Sloan, J.A. (1995). Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. Journal of Pain and Symptom Management, 10, 423–431.CrossRefGoogle ScholarPubMed
Gift, A.G., Stommel, M., Jablonski, A., et al. (2003). A cluster of symptoms over time in patients with lung cancer. Nursing Research, 52, 393–400.CrossRefGoogle ScholarPubMed
Given, C.W., Given, B.A. & Stommel, M. (1994). The impact of age, treatment, and symptoms on the physical and mental health of cancer patients. A longitudinal perspective. Cancer, 74, 2128–2138.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
Goedendorp, M.M., Gielissen, M.F., Verhagen, C.A., et al. (2009). Psychosocial interventions for reducing fatigue during cancer treatment in adults. Cochrane Database Systems Review. Jan 21;(1):CD006953.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Gao, W. (2008). Caregiver assessment of patients with advanced cancer: Concordance with patients, effect of burden and positivity. Health and Quality of Life Outcomes, 6, 42.CrossRefGoogle ScholarPubMed
Kangas, M., Bovbjerg, D.H. & Montgomery, G.H. (2008). Cancer-related fatigue: A systematic and meta-analytic review of non-pharmacological therapies for cancer patients. Psychological Bulletin, 34, 700–741.CrossRefGoogle Scholar
Lin, C.C. (2001). Congruity of cancer pain perceptions between Taiwanese patients and family caregivers: Relationship to patients' concerns about reporting pain and using analgesics. Journal of Pain and Symptom Management, 21, 18–26.CrossRefGoogle ScholarPubMed
Lobchuk, M.M., Kristjanson, L., Degner, L., et al. (1997). Perceptions of symptom distress in lung Cancer patients: I. Congruence between patients and primary family caregivers. Journal of Pain and Symptom Management, 14, 136–146.CrossRefGoogle ScholarPubMed
Lobchuk, M.M. & Degner, L.F. (2002). Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: Trends and Measurement issues. Cancer Nursing, 25, 358–374.CrossRefGoogle ScholarPubMed
Lobchuk, M.M. (2003). The memorial symptom assessment scale: Modified for use in understanding family caregivers' perceptions of cancer patients' symptom experiences. Journal of Pain and Symptom Management, 26, 644–654.CrossRefGoogle ScholarPubMed
Manning-Walsh, J. (2004). Social support as a mediator between symptom distress and quality of life in women with breast cancer. Journal of Obstetric, Gynecologic and Neonatal Nursing, 34, 482–493.CrossRefGoogle Scholar
McPherson, C.J., Wilson, K.G., Lobchuk, M.M., et al. (2008). Family caregivers' assessment of symptoms in patient with advanced cancer: Concordance with patients and factors affecting accuracy. Journal of Pain and Symptom Management, 35, 70–82.CrossRefGoogle ScholarPubMed
Milne, D.J., Mulder, L.L., Beelen, H.C.M., et al. (2005). Patients' self-report and family caregivers' perception of quality of life in patients with advanced cancer: How do they compare? European Journal of Cancer, 15, 125–132.CrossRefGoogle Scholar
Molassiotis, A., Sylt, P. & Diggins, H. (2007). The management of cancer-related fatigue after chemotherapy with acupuncture and acupressure: A randomised controlled trial. Complementary Therapies in Medicine, 15, 228–237.CrossRefGoogle ScholarPubMed
Morasso, G., Capelli, M., Viterbori, P., et al. , (1999). Psychological and symptom distress in terminal cancer patients with met and unmet needs. Journal of Pain and Symptom Management, 17, 402–409.CrossRefGoogle ScholarPubMed
Oh, E.G. (2004). Symptom experience in Korean adults with lung cancer. Journal of Pain and Symptom Management, 28, 133–139.CrossRefGoogle ScholarPubMed
Portenoy, R.K., Thaler, H.T., Kornblith, A.B., et al. (1994). The memorial symptom assessment scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer30A, 1326–1336.CrossRefGoogle ScholarPubMed
Rhodes, V.A. & Watson, P.M. (1987). Symptom distress-the concept: Past and present. Seminars in Oncology Nursing, 3, 242–247.CrossRefGoogle ScholarPubMed
Sneeuw, K.C., Sprangers, M.A. & Aaronson, N.K. (2002). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. Journal of Clinical Epidemiology, 55, 1130–1143.CrossRefGoogle ScholarPubMed
Tishelman, C., Degner, L.F., Rudman, A., et al. (2005). Symptoms in patients with lung carcinoma: Distinguishing distress from intensity. Cancer, 104, 2013–2021.CrossRefGoogle ScholarPubMed