Abstract
Background
The literature suggests that psychological distress and quality of life are interdependent in couples coping with cancer. The current study seeks to extend these findings to physical symptom burden, examining differences in symptom self-rating and perception of partner symptoms.
Methods
Couples were approached while waiting for an integrative oncology service. Fifty patients and their partners completed the Edmonton Symptom Assessment Scale (ESAS-FS; twelve symptoms, scores 0–10, 10 worst possible) and a Global Health measure (PROMIS10). Patient and partner each also completed the ESAS-FS as it related to their perception of the other’s symptoms. ESAS distress subscales analyzed included Global (GDS), Psychosocial (PSS), and Physical (PHS). Analyses included paired t tests to examine all measures.
Results
Fifty-eight percent of patients were female with most common cancer diagnoses of breast (22%), gastrointestinal (16%), and thoracic/H&N (16%). For ESAS-FS self-ratings, patients had significantly higher physical distress than partners, with a no significant difference in psychosocial distress. For PROMIS10 self-ratings, patients reported significantly lower global health and physical health, (p’s < 0.001); no differences were found for mental health between patients and caregivers. Patient rating of partner physical distress (PHS, p = 0.01) was significantly higher than partner self-rating, with no significant difference observed in ratings for psychosocial distress. Partner rating of patient psychosocial distress (PSS, p < 0.001) and physical distress (PHS, p = 0.001) was significantly higher than that of patient self-rating.
Conclusions
Our findings suggest that both patients and partners perceive physical distress of the other higher than self; however, patients may be more sensitive to psychosocial distress in their partners.
Similar content being viewed by others
References
Deshields TL, Potter P, Olsen S, Liu J (2014) The persistence of symptom burden: symptom experience and quality of life of cancer patients across one year. Support Care Cancer 22(4):1089–1096
Kim JEE, Dodd MJ, Aouizerat BE et al (2009) A review of the prevalence and impact of multiple symptoms in oncology patients. JPSM 37(4):715–736
Girgis A, Lambert S, Johnson C et al (2013) Physical, psychosocial, and economic burden of caring for people with cancer: a review. JOP 9(4):197–202
Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282(23):2215–2219
Reeve BB, Mitchell SA, Dueck AC, et al. (2014) Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. J Natl Cancer Inst. 106(7)
Tanco K, Vidal M, Joseph AA et al (2018) Testing the feasibility of using the Edmonton Symptom Assessment System (ESAS) to assess caregiver symptom burden. Palliative and Supportive Care 16(1):14–22
Kurtz JC, Given CC et al (1996) Concordance of cancer patient and caregiver symptom reports. Cancer Pract 4(4):185–190
Yeşilbalkan OU, Okgün A (2010) Patients’ self reports and caregivers’ perception of symptoms in Turkish cancer patients. Eur J Oncol Nurs 14(2):119–124
Lobchuk MM, Kristjanson L, Degner L et al (1997) Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers. J Pain Symptom Manag 14(3):136–146
Litzelman K, Green PA, Yabroff KR (2016) Cancer and quality of life in spousal dyads: spillover in couples with and without cancer-related health problems. Support Care Cancer 24(2):763–771
Milne DJ, Mulder LL, Beelen HC et al (2006) Patients’ self-report and family caregivers’ perception of quality of life in patients with advanced cancer: how do they compare? Eur J Cancer Care (Engl) 15(2):125–132
Nekolaichuk CL, Maguire TO, Suarez-Almazor M, Rogers WT, Bruera E (1999) Assessing the reliability of patient, nurse, and family caregiver symptom ratings in hospitalized advanced cancer patients. J Clin Oncol 17(11):3621–3630
Silveira MJ, Given CW, Given B, Rosland AM, Piette JD (2010) Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy. Chronic Illn 6(1):46–56
Bruera E, Kuehn N, Miller MJ et al (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7:6
Hays RD, Bjorner JB, Revicki DA, Spritzer KL, Cella D (2009) Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Qual Life Res 18(7):873–880
Lopez G, McQuade J, Cohen L, Williams JT, Spelman AR, Fellman B, Li Y, Bruera E, Lee RT (2017) Integrative oncology physician consultations at a comprehensive cancer center: analysis of demographic, clinical and patient reported outcomes. J Cancer 8(3):395–402
Lopez G, Liu W, Milbury K, Spelman A, Wei Q, Bruera E, Cohen L (2017) The effects of oncology massage on symptom self-report for cancer patients and their caregivers. Support Care Cancer 25:3645–3650
Yennurajalingam S, Urbauer DL, Casper KLB, Reyes-Gibby CC, Chacko R, Poulter V, Bruera E (2011) Impact of a palliative care consultation team on cancer-related symptoms in advanced cancer patients referred to an outpatient supportive care clinic. J Pain Symptom Manag 41(1):49–56
Funding
The research was funded in part by support from the Duncan Family Institute for Cancer Prevention and Risk Assessment. This research is also supported in part by the National Institutes of Health (NIH) through M. D. Anderson’s Cancer Center Support Grant CA016672.
Author information
Authors and Affiliations
Contributions
All authors have read and approved the manuscript.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Additional information
This manuscript is not under consideration elsewhere. The study was conducted as part of an IRB approved protocol.
Rights and permissions
About this article
Cite this article
Lopez, G., Milbury, K., Chen, M. et al. Couples’ symptom burden in oncology care: perception of self and the other. Support Care Cancer 27, 139–145 (2019). https://doi.org/10.1007/s00520-018-4298-7
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-018-4298-7