[en] Objective: Although cancer patients frequently experience self-perceived burden to others, this perception has not been enough studied. The aim of this study was to investigate the prevalence of selfperceived burden to the primary caregiver (SPB-PC) and associated factors in an older patient population with hematologic malignancies at the time of chemotherapy initiation.
Methods: In total, 166 consecutive patients with hematologic malignancies aged ≥65 years were
recruited at the time of chemotherapy initiation. Patients’ SPB-PC was assessed using a 100-mm visual analogue scale (VAS). Characteristics potentially associated with SPB-PC, including sociodemographic and medical characteristics, physical functioning status (Karnofsky performance score, activities of daily living (ADL)/instrumental ADL), symptoms (fatigue, pain, nausea, quality of life), psychological distress (Hospital Anxiety and Depression Scale (HADS)), perceived cognitive function (Functional Assessment of Cancer Therapy Cognitive (FACT-Cog) Scale), and patients’/primary caregivers’ personal relationship characteristics (family tie, support), were assessed.
Results: Thirty-five percent of patients reported moderate to severe SPB-PC (VAS ≥ 50 mm).
Patients’ SPB-PC was associated with lower Karnofsky performance (β = 0.135, p = 0.058) and
ADL (β = 0.148, p = 0.037) scores, and higher HADS (β = 0.283, p<0.001) and FACT-Cog perceived cognitive impairments subscale (β = 0.211, p = 0.004) scores. The proportion of explained variance was 23.5%.
Conclusions: Health care professionals should be aware that about one third of older cancer patients experience moderate to severe SPB-PC at the time of chemotherapy initiation. They should adapt their support of patients who report such a feeling.
Disciplines :
Hematology
Author, co-author :
Libert, Y
Borghgraef, C
BEGUIN, Yves ; Centre Hospitalier Universitaire de Liège - CHU > Service d'hématologie clinique
Delvaux, N
DEVOS, Martine ; Centre Hospitalier Universitaire de Liège - CHU > Centre d'oncologie
Doyen, C
Dubruille, S
Etienne, Anne-Marie ; Université de Liège > Département de Psychologie > Psychologie de la santé
Simmons LA. Self-perceived burden in cancer patients: validation of the Self-perceived Burden Scale. Cancer Nurs 2007;30(5):405–11.
Grunfeld E et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAj 2004;170(12):1795–1801.
Cohen LM, Germain MJ. Caregiver burden and hemodialysis. Clin J Am Soc Nephrol 2014;9(5):840–2.
Manskow US et al. Factors affecting caregiver burden 1 year after severe traumatic brain injury: a prospective nationwide multicenter study. J Head Trauma Rehabil 2015; 30(6):411–423.
Springate BA, Tremont G. Dimensions of caregiver burden in dementia: impact of demographic, mood, and care recipient variables. Am J Geriatr Psychiatry 2014;22(3):294–300.
Costa-Requena G, Espinosa Val M, Cristofol R. Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliat Support Care 2015;13(3):583–9.
Peters ME et al. A prospective analysis on fatigue and experienced burden in informal caregivers of cancer patients during cancer treatment in the palliative phase. Acta Oncol 2015;54(4):500–6.
McPherson CJ, Wilson KG, Murray MA. Feeling like a burden: exploring the perspectives of patients at the end of life. Soc Sci Med 2007;64(2):417–27.
Ashby M et al. Renal dialysis abatement: lessons from a social study. Palliat Med 2005;19(5):389–96.
Zweibel NR, Cassel CK. Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist 1989;29(5):615–21.
Chochinov HM et al. Understanding the will to live in patients nearing death. Psychosomatics 2005;46(1):7–10.
Coyle N, Sculco L. Expressed desire for hastened death in seven patients living with advanced cancer: a phenomenologic inquiry. Oncol Nurs Forum 2004;31(4):699–709.
Filiberti A et al. Characteristics of terminal cancer patients who committed suicide during a home palliative care program. J Pain Symptom Manage 2001;22(1):544–53.
Thomas C, Morris SM, Clark D. Place of death: preferences among cancer patients and their carers. Soc Sci Med 2004;58(12):2431–44.
Murray MA et al. Women's decision-making needs regarding place of care at end of life. J Palliat Care 2003;19(3):176–84.
Menec VH. The relation between everyday activities and successful aging: a 6-year longitudinal study. J Gerontol B Psychol Sci Soc Sci 2003;58(2):S74–82.
Boszormenyi - Nagy I, Spark GM. Invisible Loyalties: Reciprocity Intergenerational Family Therapy, Harper & Row: New York, 1973.
Adams JS. Inequity in social exchange, in Advances in Experimental Social Psychology, Academic Press: New York, 1965;267–299.
Ciccone A, Ferrant A. Honte, Culpabilité et Traumatisme, Dunod: Paris, 2008;256.
De Faye BJ et al. Stress and coping with advanced cancer. Palliat Support Care 2006;4(3):239–49.
Chochinov HM et al. Burden to others and the terminally ill. J Pain Symptom Manage 2007;34(5):463–71.
Cousineau N et al. Measuring chronic patients' feelings of being a burden to their caregivers: development and preliminary validation of a scale. Med Care 2003;41(1):110–8.
Kowal J et al. Self-perceived burden in chronic pain: relevance, prevalence, and predictors. Pain 2012;153(8):1735–41.
Oeki M, Mogami T, Hagino H. Self-perceived burden in patients with cancer: scale development and descriptive study. Eur J Oncol Nurs 2012;16(2):145–52.
Wilson KG, Curran D, McPherson CJ. A burden to others: a common source of distress for the terminally ill. Cogn Behav Ther 2005;34(2):115–23.
Akechi T et al. Major depression, adjustment disorders, and post-traumatic stress disorder in terminally ill cancer patients: associated and predictive factors. J Clin Oncol 2004;22(10):1957–65.
Kanzler KE et al. Suicidal ideation and perceived burdensomeness in patients with chronic pain. Pain Pract 2012;12(8):602–9.
Cukrowicz KC et al. Perceived burdensomeness and suicide ideation in older adults. Psychol Aging 2011;26(2):331–8.
Lofaso CR, Weigand DA. Individual characteristics and self-perceived burden in cancer patients. Curr Psychol 2014;33(2):174–184.
Johnson JO, Sulmasy DP, Nolan MT. Patients' experiences of being a burden on family in terminal illness. J Hosp Palliat Nurs 2007;9(5):264–269.
Akazawa T et al. Self-perceived burden in terminally ill cancer patients: a categorization of care strategies based on bereaved family members' perspectives. J Pain Symptom Manage 2010;40(2):224–34.
Dyeson TB. Burden Self-Image: a mediating variable of depressive symptoms among chronically ill care recipients. J Gerontol Soc Work 2000;33(1):17–33.
Miller M et al. Cancer and the risk of suicide in older Americans. J Clin Oncol 2008;26(29):4720–4.
Manitta V et al. The symptom burden of patients with hematological malignancy: a cross-sectional observational study. J Pain Symptom Manage 2011;42(3):432–42.
Katz S et al. Studies of illness in the aged: the index of ADL: a standardized measure of biological and psychosocial function. Jama 1963;185(12):914–919.
Roehrig B et al. How many and which items of activities of daily living (ADL) and instrumental. Crit Rev Oncol Hematol 2007;62(2):164–71.
Wagner LI et al. Measuring patient self-reported cognitive function: development of the functional assessment of cancer therapy–cognitive function instrument. J Support Oncol 2009;7(6):W32–W39.
Joly F et al. French version of the Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog) version 3. Support Care Cancer 2012;20(12):3297–305.