Support Care Cancer DOI 10.1007/s00520-016-3108-3
ORIGINAL ARTICLE
Quality of life discordance between terminal cancer patients and family caregivers: a multicenter study Yong Joo Lee 1 & Jung Eun Kim 2 & Youn Seon Choi 2 & In Cheol Hwang 3 & Sun Wook Hwang 4 & Young Sung Kim 5 & Hyo Min Kim 6 & Hong Yup Ahn 7 & So Jin Kim 8
Received: 9 September 2015 / Accepted: 26 January 2016 # Springer-Verlag Berlin Heidelberg 2016
Abstract Background Research studies on quality of life (QOL) discordance between cancer patients and family caregivers are limited, and the results are inconsistent. The objective of this study was to examine QOL discordance between patients and family caregivers in a hospice setting and to identify factors associated with the discordance. Methods We enrolled 178 patient-family caregiver pairs from six tertiary hospital hospice palliative care units in South Korea in this cross-sectional study. To establish groupings based on patient and family caregiver QOL levels, we measured the QOL of patient and family caregiver pairs using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care and Yong Joo Lee and Jung Eun Kim contributed equally to this work. * In Cheol Hwang [email protected]
1
Department of Palliative Medicine, Seoul St. Mary’s Hospital, Catholic University College of Medicine, Seoul, Korea
2
Department of Family Medicine, Korea University Guro Hospital, Seoul, Korea
3
Department of Family Medicine, Gachon University Gil Medical Center, 1198 Guwol-dong, Namdong-gu, Incheon 405-760, Korea
4
Department of Family Medicine, Catholic University St. Paul’s Hospital, Seoul, Korea
5
Department of Family Medicine, Ilsan Hospital, Goyang, Korea
6
Department of Family Medicine, Kyungpook National University Medical Center, Daegu, Korea
7
Department of Statistics, Dongguk University, Seoul, Korea
8
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
the Caregiver QOL Index-Cancer, respectively. Pairs were categorized into the following three groups: both good QOL pairs, only poor patient QOL, and only poor family caregiver QOL. Factors associated with only poor patient or only poor family caregiver QOL were compared to both good QOL pairs. A stepwise multivariate regression model was used to identify relevant factors. Results The QOL of family caregivers did not correlate significantly (P = 0.227) with QOL in terminally ill cancer patients. As well, poor emotional function in patients was the only significant factor associated with the only poor patient QOL group [adjusted odds ratio (aOR), 4.1; 95 % confidence interval (CI), 1.5–11.5]. However, emotionally distressed family caregivers (aOR, 10.2; 95 % CI, 2.8–37.5), family caregivers who professed a religion (aOR, 4.1; 95 % CI, 1.5–11.3), and family caregivers with low social support (aOR, 3.9; 95 % CI, 1.5–10.6) were independent predictors for the only poor family caregiver QOL group. Conclusions Assessing the respective emotional status of both the patient and family caregiver is needed in hospice care to reduce the gap in QOL between the two groups. Further, more attention should be paid to the lack of social support for family caregivers. Keywords Discordance . Emotional distress . Family caregiver . Quality of life . Terminal cancer
Introduction Quality of life (QOL) is an essential goal of palliative care. Further, QOL has been described as a multidimensional concept that encompasses physical, cognitive, social, emotional, and spiritual elements [1, 2]. In the cancer disease trajectory, the patients’ QOL and the QOL of
Support Care Cancer
family caregivers are equally important. As well, cancer care that involves emotional and psychosocial support is more labor-intensive than care for other non-cancer chronic diseases [3]. In particular, family caregivers who provide for patients with advanced metastatic cancer tend to experience significant psychological distress, including difficulties with sleep and depressive symptoms [4, 5]. The QOL of family caregivers is known to be influenced by the economic status, education, and care burden of the family caregiver [6]. In addition, the patient’s QOL can also influence the caregiver’s QOL because patients and family caregivers are psychologically bonded [7] and interact with each other, especially in Korean culture [8–10]. Based on the significant correlation between the psychological distress of the patient and the caregiver’s QOL [11–14], some researchers have suggested that interventions aimed at improving the caregiver’s QOL are necessary to enhance QOL of cancer patients [15, 16]. However, improving the QOL of advanced cancer patients does not always have an impact on the caregiver’s level of burden or QOL [17]. Due to the inconsistent results of previous studies, a need exists to identify factors related to the discordance between patient QOL and caregiver QOL. Such studies might offer palliative care providers useful tips on interventions that could be employed to improve the caregiver’s QOL. Only a limited number of studies on the factors related to QOL discordance between terminal cancer patients and their family caregivers have been conducted. Accordingly, the objective of this study was to identify factors associated with the discord in QOL between terminal cancer patients and their family caregivers.
Methods Study design and subjects This was a cross-sectional study conducted at six tertiary hospital hospice palliative care units in South Korea during 2014. Inclusion criteria were mentally alert patients over 20 years of age who had experienced consecutive hospitalizations for terminal cancer and were capable of communicating with an interviewer or filling out questionnaires and had been deemed competent to understand the purpose of the study. Patients were excluded if they could not complete the questionnaire due to physical or mental incapacitation. Patients were required to identify their primary family caregiver, who was defined as the relative that provided the most informal care. The family caregivers were invited to participate in the study but were excluded if they were 12 h/dayb Caregiving duration > 3 monthsb Lower social supportb Dysfunctional family Lower incomeb
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ORIGINAL ARTICLE
Quality of life discordance between terminal cancer patients and family caregivers: a multicenter study Yong Joo Lee 1 & Jung Eun Kim 2 & Youn Seon Choi 2 & In Cheol Hwang 3 & Sun Wook Hwang 4 & Young Sung Kim 5 & Hyo Min Kim 6 & Hong Yup Ahn 7 & So Jin Kim 8
Received: 9 September 2015 / Accepted: 26 January 2016 # Springer-Verlag Berlin Heidelberg 2016
Abstract Background Research studies on quality of life (QOL) discordance between cancer patients and family caregivers are limited, and the results are inconsistent. The objective of this study was to examine QOL discordance between patients and family caregivers in a hospice setting and to identify factors associated with the discordance. Methods We enrolled 178 patient-family caregiver pairs from six tertiary hospital hospice palliative care units in South Korea in this cross-sectional study. To establish groupings based on patient and family caregiver QOL levels, we measured the QOL of patient and family caregiver pairs using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care and Yong Joo Lee and Jung Eun Kim contributed equally to this work. * In Cheol Hwang [email protected]
1
Department of Palliative Medicine, Seoul St. Mary’s Hospital, Catholic University College of Medicine, Seoul, Korea
2
Department of Family Medicine, Korea University Guro Hospital, Seoul, Korea
3
Department of Family Medicine, Gachon University Gil Medical Center, 1198 Guwol-dong, Namdong-gu, Incheon 405-760, Korea
4
Department of Family Medicine, Catholic University St. Paul’s Hospital, Seoul, Korea
5
Department of Family Medicine, Ilsan Hospital, Goyang, Korea
6
Department of Family Medicine, Kyungpook National University Medical Center, Daegu, Korea
7
Department of Statistics, Dongguk University, Seoul, Korea
8
School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
the Caregiver QOL Index-Cancer, respectively. Pairs were categorized into the following three groups: both good QOL pairs, only poor patient QOL, and only poor family caregiver QOL. Factors associated with only poor patient or only poor family caregiver QOL were compared to both good QOL pairs. A stepwise multivariate regression model was used to identify relevant factors. Results The QOL of family caregivers did not correlate significantly (P = 0.227) with QOL in terminally ill cancer patients. As well, poor emotional function in patients was the only significant factor associated with the only poor patient QOL group [adjusted odds ratio (aOR), 4.1; 95 % confidence interval (CI), 1.5–11.5]. However, emotionally distressed family caregivers (aOR, 10.2; 95 % CI, 2.8–37.5), family caregivers who professed a religion (aOR, 4.1; 95 % CI, 1.5–11.3), and family caregivers with low social support (aOR, 3.9; 95 % CI, 1.5–10.6) were independent predictors for the only poor family caregiver QOL group. Conclusions Assessing the respective emotional status of both the patient and family caregiver is needed in hospice care to reduce the gap in QOL between the two groups. Further, more attention should be paid to the lack of social support for family caregivers. Keywords Discordance . Emotional distress . Family caregiver . Quality of life . Terminal cancer
Introduction Quality of life (QOL) is an essential goal of palliative care. Further, QOL has been described as a multidimensional concept that encompasses physical, cognitive, social, emotional, and spiritual elements [1, 2]. In the cancer disease trajectory, the patients’ QOL and the QOL of
Support Care Cancer
family caregivers are equally important. As well, cancer care that involves emotional and psychosocial support is more labor-intensive than care for other non-cancer chronic diseases [3]. In particular, family caregivers who provide for patients with advanced metastatic cancer tend to experience significant psychological distress, including difficulties with sleep and depressive symptoms [4, 5]. The QOL of family caregivers is known to be influenced by the economic status, education, and care burden of the family caregiver [6]. In addition, the patient’s QOL can also influence the caregiver’s QOL because patients and family caregivers are psychologically bonded [7] and interact with each other, especially in Korean culture [8–10]. Based on the significant correlation between the psychological distress of the patient and the caregiver’s QOL [11–14], some researchers have suggested that interventions aimed at improving the caregiver’s QOL are necessary to enhance QOL of cancer patients [15, 16]. However, improving the QOL of advanced cancer patients does not always have an impact on the caregiver’s level of burden or QOL [17]. Due to the inconsistent results of previous studies, a need exists to identify factors related to the discordance between patient QOL and caregiver QOL. Such studies might offer palliative care providers useful tips on interventions that could be employed to improve the caregiver’s QOL. Only a limited number of studies on the factors related to QOL discordance between terminal cancer patients and their family caregivers have been conducted. Accordingly, the objective of this study was to identify factors associated with the discord in QOL between terminal cancer patients and their family caregivers.
Methods Study design and subjects This was a cross-sectional study conducted at six tertiary hospital hospice palliative care units in South Korea during 2014. Inclusion criteria were mentally alert patients over 20 years of age who had experienced consecutive hospitalizations for terminal cancer and were capable of communicating with an interviewer or filling out questionnaires and had been deemed competent to understand the purpose of the study. Patients were excluded if they could not complete the questionnaire due to physical or mental incapacitation. Patients were required to identify their primary family caregiver, who was defined as the relative that provided the most informal care. The family caregivers were invited to participate in the study but were excluded if they were 12 h/dayb Caregiving duration > 3 monthsb Lower social supportb Dysfunctional family Lower incomeb
49
54.1
0.634
59.2
