JGO-00215; No. of pages: 6; 4C: J O U RN A L OF GE RI A T RI C O NC O L O G Y XX ( 20 1 4 ) XX X–XX X
Available online at www.sciencedirect.com
ScienceDirect
Short communication
Do age and quality of life of patients with cancer influence quality of life of the caregiver? Varun Shahia , Maria I. Lapidb,⁎, Simon Kungb , Pamela J. Athertonc , Jeff A. Sloand , Matthew M. Clarkb , Teresa A. Rummansb a
Mayo Medical School, Mayo Clinic, Rochester, MN, USA Department of Psychiatry & Psychology, Mayo Clinic, Rochester, MN, USA c Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, MN, USA d Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA b
AR TIC LE I N FO
ABS TR ACT
Article history:
Objective: There are significant burdens associated with providing care for loved ones with
Received 27 June 2013
cancer. However, caregiver quality of life (QOL) is often overlooked. With the increasing
Received in revised form
number of older adults with cancer, it is important to determine whether a patient's age
6 December 2013
and QOL have any association with the caregiver's QOL. The objective of our study was to
Accepted 21 March 2014
describe caregiver QOL and explore whether patient age and other psychosocial factors impact caregiver QOL. Materials and Methods: Baseline information from patients with advanced cancer undergoing
Keywords:
radiation and their caregivers, who were enrolled in a randomized, controlled clinical trial
Informal caregiver
to test the effectiveness of a structured, multidisciplinary QOL intervention, was analyzed
Well-being
for this study. Caregivers completed the Caregiver Quality of Life Index-Cancer (CQOLC)
Psychosocial
Scale. Both patients and caregivers completed the Linear Analogue Self-Assessment (LASA)
Intervention
to measure QOL, and Profile of Mood States (POMS) to measure mood states. Results: Overall, 131 patient–caregiver pairs participated in the study. At baseline, caregivers of older adults (≥65 years) had higher mental (P = 0.01), emotional (P = 0.003), spiritual (P < 0.01), and social support (P = 0.03) LASA QOL scores. Caregivers of older adults also had higher baseline QOL (CQOLC, P = 0.003) and mood (POMS, P = 0.04) than caregivers of younger adults. Caregivers of patients with higher LASA QOL scores had higher overall (P = 0.02), mental (P = 0.006), physical (P = 0.02), emotional (P = 0.002), and spiritual LASA QOL scores (P = 0.047). Conclusions: Caregivers of older adults with advanced cancer demonstrated better QOL and fewer mood disturbances compared to caregivers of younger patients. When patients have good QOL, caregivers also had good QOL. © 2014 Elsevier Ltd. All rights reserved.
⁎ Corresponding author at: Mayo Clinic Department of Psychiatry & Psychology, 200 First Street SW, Rochester, MN 55905, USA. Tel.: + 1 507 284 4159; fax: +1 507 284 4158. E-mail address: [email protected] (M.I. Lapid).
http://dx.doi.org/10.1016/j.jgo.2014.03.003 1879-4068/© 2014 Elsevier Ltd. All rights reserved.
Please cite this article as: Shahi V, et al, Do age and quality of life of patients with cancer influence quality of life of the caregiver?, J Geriatr Oncol (2014), http://dx.doi.org/10.1016/j.jgo.2014.03.003
2
J O U RN A L OF GE RI A TR I C O NC OLO G Y XX ( 20 1 4 ) XX X–XXX
1. Background Quality of life (QOL) is often difficult to maintain for patients with cancer and for their caregivers. Overall QOL consists of 5 domains of well-being (WB): physical, cognitive, social, emotional, and spiritual.1,2 Aside from the negative psychological impact of receiving a cancer diagnosis, multiple domains of QOL also often decline in patients with cancer during oncologic treatment and its associated high symptom burden.1,3,4 Caregiving during cancer treatment is labor intensive, with patients requiring assistance with basic and instrumental activities of daily living, emotional and psychosocial support, and an advocate for their healthcare.5 This large burden of responsibility of care placed upon the caregiver during the time of cancer diagnosis and treatment can lead to a reduction in the caregiver's QOL.6 Unfortunately, caregiver QOL often goes unnoticed with as many as 30% of caregivers experiencing some form of distress7 and complete exhaustion.8 Caregivers with unmet needs, lack of social support, and higher stress were found to have worse mental health.9–11 Those who provide more intense support to patients with cancer during treatment experience negative outcomes, are less effective partners in the care of the patient, and more frequently delay their own healthcare needs.5 Age differences have also been reported, with older caregivers having better psychosocial but worse physical adjustment.12 Caregivers have distinct needs from those of the patient,13 and other factors that can influence the QOL of the caregiver include caregiver's spirituality,14 educational programs for patients and caregivers designed to address the emotional and physical needs of both,15 and psychological and physical symptoms of the caregiver.16 To add to the challenge of maintaining caregiver QOL, improving patient QOL does not necessarily improve caregiver QOL.17 Given the significant burdens associated with providing care for a loved one with advanced cancer and advanced age, QOL of caregivers for this patient population deserves empirical attention, and factors that impact caregiver QOL need to be further studied. In the setting of a rapidly aging population in the United States with an increasing number of older patients with cancer18 an important factor to investigate is whether a patient's age has any association with the caregiver's QOL.19 Older patients with cancer have been shown to have worse physical functioning than younger patients with cancer.20,21 While we cannot change the patient's age, we can identify which caregivers might be at higher risk of worse QOL based on the patient's age, and thus attempt focused interventions to try to improve caregiver QOL. Thus, the goal of this secondary study was to describe the QOL of caregivers of patients with advanced cancer and explore whether patient age and QOL impact the caregiver's QOL.
2. Methods The larger study from which our data were derived was a randomized, two-group, controlled clinical trial to compare the efficacy of a structured, multidisciplinary intervention to standard care in maintaining overall QOL of patients with
advanced cancer undergoing radiation therapy and their caregivers.3 This randomized trial was approved by the Mayo Clinic Institutional Review Board and registered at ClinicalTrials.gov (NCT01360814). Patients were diagnosed with advanced cancer (brain, gastrointestinal, head and neck, lung, and others) within the previous 12 months and were scheduled to receive at least one week of radiation therapy (>85% of the patients were also receiving chemotherapy). Caregivers were defined as the primary, non-professional caregiver as identified by the patients. Patients and caregivers were randomly assigned, as a pair, to either the intervention or usual care (control) and completed a series of QOL assessments at baseline. This secondary study is exploratory and hypothesisgenerating utilizing data collected at baseline.
2.1. Measures Caregivers completed three assessments administered in a booklet form. The Caregiver Quality of Life Index-Cancer (CQOLC) Scale is validated and contains 35-items measuring components of physical, social, financial, psychological, caregiver burden and family dimensions.22,23 One total score is calculated. The Linear Analog Self-Assessment (LASA) contains 10 standalone items rated on individual 0–10 Likert scales. These include an overall QOL item plus questions regarding mentality, physicality, emotion, social activity, spirituality, fatigue, social support, and financial and legal concerns. The items have been validated as measures of global QOL dimensional constructs in numerous settings.24 The Profile of Mood States—Brief (POMS-B) form is a 30-item assessment measuring anger–hostility, tension–anxiety, depression– dejection, confusion–bewilderment, fatigue–inertia, and vigor– activity, and overall mood disturbance.25 Reliability and validity testing has been performed within cancer populations.26 All assessments were scored according to specific scoring algorithms. To aid in the comparability and interpretability of scores, all total and subscale scores were transformed to a uniform percentage of theoretical range scale. If a lower score indicated better QOL, mood or functioning, it was reversed. All scores were then converted to a 0–100 percentage scale. Thus all scores have the same range and meaning, i.e. a score of 100 reflects best QOL, mood or functioning. Patients were categorized according to the LASA overall QOL scores (≤50 vs. >50). Previous research has indicated that this cutoff, as measured by the visual analog Spritzer Uniscale, is a prognostic factor.27 As the linear analog scale has been shown to be comparable to the visual analog scale, this categorization is valid in this study.28 Caregiver QOL scores were compared according to patient's age and LASA overall QOL categorization using Wilcoxon techniques. Effect sizes, as an indication of clinical meaning, were computed as the difference between group means divided by the pooled standard deviation. Sizes of 0.2, 0.5, and 0.8 were interpreted as small, medium and large.29 General linear modeling techniques, using SAS® programming, were utilized to determine variables significantly influential on the caregiver QOL. Multivariate models were constructed using independent baseline variables of patient age, gender, performance status, tumor grade, tumor site, and QOL scores; and caregiver relationship to patient. Dependent variables were the LASA items, the POMS total score and the CQOLC total score.
Please cite this article as: Shahi V, et al, Do age and quality of life of patients with cancer influence quality of life of the caregiver?, J Geriatr Oncol (2014), http://dx.doi.org/10.1016/j.jgo.2014.03.003
3
J O U RN A L OF GE RI A T RI C O NC O L O G Y XX ( 20 1 4 ) XX X–XX X
patient details are published elsewhere.3 QOL results are based on 130 caregivers and 129 patients, as one patient–caregiver dyad withdrew because the patient was hospitalized prior to study participation and one patient decided to decline.
3. Results 3.1. Population Characteristics One hundred and thirty-one patient–caregiver dyads participated in the study. No differences existed between caregivers in the intervention and control groups, so the caregiver data were combined. The majority of the caregivers were spouses (n = 98, 75%). Others were adult children (9.9%), parents (4.6%), significant others (3.8%), and friends (1.5%). Patients had a mean age of 59.3, standard deviation of 10.9 and range of 31–81. There were 90 (68.7%) patients younger than age 65 and 41 (31.3%) patients age 65 or older. As assessed by a clinician using the Eastern Cooperative Oncology Group (ECOG) performance score, the majority of patients were physically fully active and most reported good QOL. The baseline characteristics of caregivers and patients are summarized in Table 1. Further
3.2. Caregiver QOL With Regard to Patient Age At baseline, caregivers of older adults (≥ 65 years) had higher mental (mean 81.0 vs. 71.6, P = 0.01), emotional (mean 78.5 vs. 65.5, P < 0.01), spiritual (mean 85.9 vs. 74.2, P < 0.01), and social support (mean 90.2 vs. 82.6, P = 0.03) scores (Table 2). Caregivers for older adults also had higher CQOLC scores (mean 72.9 vs. 65.9, P < 0.01) and mood (POMS mean 75.6 vs. 70.5, P = 0.04) than caregivers of younger adults. Effect sizes for comparisons between patient ages were moderate, ranging from 0.04 to 0.63. Although the difference in caregiver mood (POMS total) was statistically significant, there was only a small effect size of 0.37 compared to the moderate effect
Table 1 – Baseline caregiver characteristics distribution. A: Intervention (n = 65), No. (%) Caregiver relation to patient Spouse Significant other Parent Adult child Friend Other Patient age
Available online at www.sciencedirect.com
ScienceDirect
Short communication
Do age and quality of life of patients with cancer influence quality of life of the caregiver? Varun Shahia , Maria I. Lapidb,⁎, Simon Kungb , Pamela J. Athertonc , Jeff A. Sloand , Matthew M. Clarkb , Teresa A. Rummansb a
Mayo Medical School, Mayo Clinic, Rochester, MN, USA Department of Psychiatry & Psychology, Mayo Clinic, Rochester, MN, USA c Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, MN, USA d Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA b
AR TIC LE I N FO
ABS TR ACT
Article history:
Objective: There are significant burdens associated with providing care for loved ones with
Received 27 June 2013
cancer. However, caregiver quality of life (QOL) is often overlooked. With the increasing
Received in revised form
number of older adults with cancer, it is important to determine whether a patient's age
6 December 2013
and QOL have any association with the caregiver's QOL. The objective of our study was to
Accepted 21 March 2014
describe caregiver QOL and explore whether patient age and other psychosocial factors impact caregiver QOL. Materials and Methods: Baseline information from patients with advanced cancer undergoing
Keywords:
radiation and their caregivers, who were enrolled in a randomized, controlled clinical trial
Informal caregiver
to test the effectiveness of a structured, multidisciplinary QOL intervention, was analyzed
Well-being
for this study. Caregivers completed the Caregiver Quality of Life Index-Cancer (CQOLC)
Psychosocial
Scale. Both patients and caregivers completed the Linear Analogue Self-Assessment (LASA)
Intervention
to measure QOL, and Profile of Mood States (POMS) to measure mood states. Results: Overall, 131 patient–caregiver pairs participated in the study. At baseline, caregivers of older adults (≥65 years) had higher mental (P = 0.01), emotional (P = 0.003), spiritual (P < 0.01), and social support (P = 0.03) LASA QOL scores. Caregivers of older adults also had higher baseline QOL (CQOLC, P = 0.003) and mood (POMS, P = 0.04) than caregivers of younger adults. Caregivers of patients with higher LASA QOL scores had higher overall (P = 0.02), mental (P = 0.006), physical (P = 0.02), emotional (P = 0.002), and spiritual LASA QOL scores (P = 0.047). Conclusions: Caregivers of older adults with advanced cancer demonstrated better QOL and fewer mood disturbances compared to caregivers of younger patients. When patients have good QOL, caregivers also had good QOL. © 2014 Elsevier Ltd. All rights reserved.
⁎ Corresponding author at: Mayo Clinic Department of Psychiatry & Psychology, 200 First Street SW, Rochester, MN 55905, USA. Tel.: + 1 507 284 4159; fax: +1 507 284 4158. E-mail address: [email protected] (M.I. Lapid).
http://dx.doi.org/10.1016/j.jgo.2014.03.003 1879-4068/© 2014 Elsevier Ltd. All rights reserved.
Please cite this article as: Shahi V, et al, Do age and quality of life of patients with cancer influence quality of life of the caregiver?, J Geriatr Oncol (2014), http://dx.doi.org/10.1016/j.jgo.2014.03.003
2
J O U RN A L OF GE RI A TR I C O NC OLO G Y XX ( 20 1 4 ) XX X–XXX
1. Background Quality of life (QOL) is often difficult to maintain for patients with cancer and for their caregivers. Overall QOL consists of 5 domains of well-being (WB): physical, cognitive, social, emotional, and spiritual.1,2 Aside from the negative psychological impact of receiving a cancer diagnosis, multiple domains of QOL also often decline in patients with cancer during oncologic treatment and its associated high symptom burden.1,3,4 Caregiving during cancer treatment is labor intensive, with patients requiring assistance with basic and instrumental activities of daily living, emotional and psychosocial support, and an advocate for their healthcare.5 This large burden of responsibility of care placed upon the caregiver during the time of cancer diagnosis and treatment can lead to a reduction in the caregiver's QOL.6 Unfortunately, caregiver QOL often goes unnoticed with as many as 30% of caregivers experiencing some form of distress7 and complete exhaustion.8 Caregivers with unmet needs, lack of social support, and higher stress were found to have worse mental health.9–11 Those who provide more intense support to patients with cancer during treatment experience negative outcomes, are less effective partners in the care of the patient, and more frequently delay their own healthcare needs.5 Age differences have also been reported, with older caregivers having better psychosocial but worse physical adjustment.12 Caregivers have distinct needs from those of the patient,13 and other factors that can influence the QOL of the caregiver include caregiver's spirituality,14 educational programs for patients and caregivers designed to address the emotional and physical needs of both,15 and psychological and physical symptoms of the caregiver.16 To add to the challenge of maintaining caregiver QOL, improving patient QOL does not necessarily improve caregiver QOL.17 Given the significant burdens associated with providing care for a loved one with advanced cancer and advanced age, QOL of caregivers for this patient population deserves empirical attention, and factors that impact caregiver QOL need to be further studied. In the setting of a rapidly aging population in the United States with an increasing number of older patients with cancer18 an important factor to investigate is whether a patient's age has any association with the caregiver's QOL.19 Older patients with cancer have been shown to have worse physical functioning than younger patients with cancer.20,21 While we cannot change the patient's age, we can identify which caregivers might be at higher risk of worse QOL based on the patient's age, and thus attempt focused interventions to try to improve caregiver QOL. Thus, the goal of this secondary study was to describe the QOL of caregivers of patients with advanced cancer and explore whether patient age and QOL impact the caregiver's QOL.
2. Methods The larger study from which our data were derived was a randomized, two-group, controlled clinical trial to compare the efficacy of a structured, multidisciplinary intervention to standard care in maintaining overall QOL of patients with
advanced cancer undergoing radiation therapy and their caregivers.3 This randomized trial was approved by the Mayo Clinic Institutional Review Board and registered at ClinicalTrials.gov (NCT01360814). Patients were diagnosed with advanced cancer (brain, gastrointestinal, head and neck, lung, and others) within the previous 12 months and were scheduled to receive at least one week of radiation therapy (>85% of the patients were also receiving chemotherapy). Caregivers were defined as the primary, non-professional caregiver as identified by the patients. Patients and caregivers were randomly assigned, as a pair, to either the intervention or usual care (control) and completed a series of QOL assessments at baseline. This secondary study is exploratory and hypothesisgenerating utilizing data collected at baseline.
2.1. Measures Caregivers completed three assessments administered in a booklet form. The Caregiver Quality of Life Index-Cancer (CQOLC) Scale is validated and contains 35-items measuring components of physical, social, financial, psychological, caregiver burden and family dimensions.22,23 One total score is calculated. The Linear Analog Self-Assessment (LASA) contains 10 standalone items rated on individual 0–10 Likert scales. These include an overall QOL item plus questions regarding mentality, physicality, emotion, social activity, spirituality, fatigue, social support, and financial and legal concerns. The items have been validated as measures of global QOL dimensional constructs in numerous settings.24 The Profile of Mood States—Brief (POMS-B) form is a 30-item assessment measuring anger–hostility, tension–anxiety, depression– dejection, confusion–bewilderment, fatigue–inertia, and vigor– activity, and overall mood disturbance.25 Reliability and validity testing has been performed within cancer populations.26 All assessments were scored according to specific scoring algorithms. To aid in the comparability and interpretability of scores, all total and subscale scores were transformed to a uniform percentage of theoretical range scale. If a lower score indicated better QOL, mood or functioning, it was reversed. All scores were then converted to a 0–100 percentage scale. Thus all scores have the same range and meaning, i.e. a score of 100 reflects best QOL, mood or functioning. Patients were categorized according to the LASA overall QOL scores (≤50 vs. >50). Previous research has indicated that this cutoff, as measured by the visual analog Spritzer Uniscale, is a prognostic factor.27 As the linear analog scale has been shown to be comparable to the visual analog scale, this categorization is valid in this study.28 Caregiver QOL scores were compared according to patient's age and LASA overall QOL categorization using Wilcoxon techniques. Effect sizes, as an indication of clinical meaning, were computed as the difference between group means divided by the pooled standard deviation. Sizes of 0.2, 0.5, and 0.8 were interpreted as small, medium and large.29 General linear modeling techniques, using SAS® programming, were utilized to determine variables significantly influential on the caregiver QOL. Multivariate models were constructed using independent baseline variables of patient age, gender, performance status, tumor grade, tumor site, and QOL scores; and caregiver relationship to patient. Dependent variables were the LASA items, the POMS total score and the CQOLC total score.
Please cite this article as: Shahi V, et al, Do age and quality of life of patients with cancer influence quality of life of the caregiver?, J Geriatr Oncol (2014), http://dx.doi.org/10.1016/j.jgo.2014.03.003
3
J O U RN A L OF GE RI A T RI C O NC O L O G Y XX ( 20 1 4 ) XX X–XX X
patient details are published elsewhere.3 QOL results are based on 130 caregivers and 129 patients, as one patient–caregiver dyad withdrew because the patient was hospitalized prior to study participation and one patient decided to decline.
3. Results 3.1. Population Characteristics One hundred and thirty-one patient–caregiver dyads participated in the study. No differences existed between caregivers in the intervention and control groups, so the caregiver data were combined. The majority of the caregivers were spouses (n = 98, 75%). Others were adult children (9.9%), parents (4.6%), significant others (3.8%), and friends (1.5%). Patients had a mean age of 59.3, standard deviation of 10.9 and range of 31–81. There were 90 (68.7%) patients younger than age 65 and 41 (31.3%) patients age 65 or older. As assessed by a clinician using the Eastern Cooperative Oncology Group (ECOG) performance score, the majority of patients were physically fully active and most reported good QOL. The baseline characteristics of caregivers and patients are summarized in Table 1. Further
3.2. Caregiver QOL With Regard to Patient Age At baseline, caregivers of older adults (≥ 65 years) had higher mental (mean 81.0 vs. 71.6, P = 0.01), emotional (mean 78.5 vs. 65.5, P < 0.01), spiritual (mean 85.9 vs. 74.2, P < 0.01), and social support (mean 90.2 vs. 82.6, P = 0.03) scores (Table 2). Caregivers for older adults also had higher CQOLC scores (mean 72.9 vs. 65.9, P < 0.01) and mood (POMS mean 75.6 vs. 70.5, P = 0.04) than caregivers of younger adults. Effect sizes for comparisons between patient ages were moderate, ranging from 0.04 to 0.63. Although the difference in caregiver mood (POMS total) was statistically significant, there was only a small effect size of 0.37 compared to the moderate effect
Table 1 – Baseline caregiver characteristics distribution. A: Intervention (n = 65), No. (%) Caregiver relation to patient Spouse Significant other Parent Adult child Friend Other Patient age
