JOURNAL OF PALLIATIVE MEDICINE Volume 16, Number 9, 2013 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0038
Anxiety and Depression in Caregivers of Terminally Ill Cancer Patients: Impact on Their Perspective of the Patients’ Symptom Burden
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Karin Oechsle, MD,1 Kathrin Goerth,1 Carsten Bokemeyer, MD,1 and Anja Mehnert, PhD 2,3
Abstract
Background and Objective: Given the important role caregivers play in palliative care planning and decision making, anxiety and depression in caregivers of terminally ill cancer patients and their impact on the caregivers’ evaluation of the patients’ physical and psychological symptom burden were analyzed. Design and subjects: Thirty-three patients and their caregivers were recruited through the University Medical Center palliative care inpatient ward < 24h after admission. Measurements: Patients completed the Memorial Symptom Assessment Scale (MSAS). Caregivers were instructed to evaluate the symptom burden of the patient. Anxiety and depression were measured in caregivers using the PHQ-9 and the GAD-7. Results: Fifty-five percent of male caregivers and 36% of female caregivers showed moderate or severe anxiety; 36% of male caregivers compared to 14% of female caregivers had moderate or severe depression. Caregivers’ anxiety was associated with a discrepancy in the patients’ symptom evaluation for shortness of breath ( p < 0.05); nausea (p < 0.05); and frequency, intensity, and distress due to anxiety ( p < 0.01). Depression was associated with a discrepancy in the patients’ evaluation of distress due to constipation (p < 0.05), as well as intensity and distress due to anxiety ( p < 0.05). Both the caregivers’ anxiety and depression were not significantly associated with an underestimation of symptoms. There was a trend towards a higher risk of overestimation in caregivers with higher levels of anxiety (r = 0.32) ( p = 0.07) and depression (r = 0.33) ( p = 0.06). Conclusion: Integrative palliative care should offer psychooncological care for the caregivers on a routine basis to avoid misleading perspectives possibly influencing end-of-life treatment decisions. Introduction
T
he occurrence of an incurable malignant disease in a loved person is frequently accompanied by significant burden for the patient‘s relatives and caregivers. Previous studies have described levels of distress, sadness, anxiety, and depression of about 40% to 70% in caregivers of patients with advanced cancer, particularly in the late palliative phase.1–6 In addition, studies report significant rates of unmet needs and a significant decrease in quality of life in caregivers compared to normal population cohorts.2,3 Possible factors influencing anxiety and depression in caregivers of palliative care patients are heterogeneous. Some studies discuss differences between male or female relatives, the family caregivers’ or the patients’
age, the patients’ symptom profile as well as the relatives‘ self-esteem, unmet needs, or quality of life.1–5,7 Further studies have reported significant correlations between psychological symptoms in relatives and psychological symptoms or decreased psychosocial functioning in the palliative care patients.8–10 Miaskowski and colleagues11 reported findings suggesting that differences in patients’ and caregivers‘ perception of the pain experience is associated with deleterious outcomes for the patient and the family caregiver, such as higher mood disturbance and lower quality of life. One of the main characteristics of palliative care is the involvement of the patient‘s caregiver into comprehensive patient care. Based on this principle, the relative’s perspective on the patient‘s symptom burden is usually integrated into
1 Department of Oncology, Hematology and Bone Marrow Transplantation with section of Pneumology, Hubertus Wald University Comprehensive Cancer Center Hamburg, 3Institute and Outpatient Clinic of Medical Psychology, University Medical Center HamburgEppendorf, Hamburg, Germany. 2 Section of Psychosocial Oncology, Department of Medical Psychology and Medical Sociology, University Medical Center Leipzig, Saxony, Germany. Accepted May 9, 2013.
1095
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
1096 symptom assessment and treatment decisions, but less is known about specific factors possibly influencing caregivers’ perspective. Some previous studies have started to evaluated concordances and differences in the perspectives on the patients’ symptoms between patients and their relatives.12–19 Milne and colleagues20 found that most caregivers were able to accurately rate the global quality of life, the level of functioning, and the degree of symptom distress experienced by the person they were caring for, when compared with the patient’s self-rating. However, caregiver ratings for physical domains tended to be more in agreement with those of patients compared to ratings of psychosocial domains. Other research comparing symptom ratings and health-related quality of life between significant others and lung cancer patients indicated that the levels of agreement were fair to good, but that significant others consistently rated the patients‘ symptoms higher and functioning lower than the patients do themselves.21 Agreement in dimensions of symptoms and functioning were influenced by gender, patient age, and significant others’ self-reported lack of family support, health problems, and caregiver esteem.21 Therefore, the purpose of this study was to assess the prevalence of anxiety and depression in caregivers of terminally ill cancer patients and to investigate factors possibly influencing anxiety and depression. Caregiver anxiety and depression levels should be compared with (1) their evaluation of patients’ symptoms, in terms of symptom frequency, intensity burden, and treatment requirement; and with (2) discrepancies between caregiver and patient evaluation of symptoms. Methods Study design Consecutive terminally ill cancer patients being admitted to the inpatient palliative care ward of the University Medical Center Hamburg-Eppendorf were able to enter this study between November 2010 and September 2011. Admission to the inpatient palliative care ward was possible for patients suffering from incurable and progressive cancer after completion of active oncologic treatment with presence of significant physical and psychosocial symptoms prohibiting further care at home or in nonspecialized inpatient wards. Further inclusion criteria were age over 18 years, sufficient cognitive function and adequate knowledge of German language to provide written informed consent and to complete a modified version of the Memorial Symptom Assessment Scale Short Form (MSAS-SF),22,23 a validated self-report questionnaire, within 24 hours after admission to the inpatient palliative care ward (data on patient results have been published by our working group).24 Simultaneously, the caregiver of the participating patient was asked to complete a corresponding version of the MSAS-SF as well as additional questionnaires measuring anxiety and depression demonstrating their perspective on patients’ symptom burden. Both, patients and caregivers were approached by a research study assistant. Caregivers and patients were instructed not to exchange information and communicate with each other while answering the questionnaire at the inpatient palliative care ward. Measures Patient and caregiver demographics were obtained via selfreport, information about diagnosis, prior and current disease
OECHSLE ET AL. specifics, and performace status (WHO and Karnofsky); symptomatic treatment data were taken from the patients’ case files. Symptom burden was measured using a modified German version of the MSAS-SSF.22,23 The MSAS-SF has been validated in advanced cancer patients.25 Given the limited capacities of our terminally ill patients, we restricted the MSAS-SF to 12 symptoms—9 items addressed physical symptoms (pain, shortness of breath, tiredness, lack of energy, dry mouth, lack of appetite, nausea, constipation, and difficulty sleeping) and 3 addressed psychological symptoms (irritability, anxiety, and sadness). Three categories—symptom frequency (‘‘How often did you have it?’’), symptom intensity (‘‘How severe was it usually?’’), and symptom distress (‘‘How much does it distress or bother you?’’)—were extended by a fourth category, perceived treatment requirement (‘‘How important is treatment of this symptom?’’). The standard MSAS-SF categories of frequency, intensity, and distress were rated on a scale from 0 to 4 (0 = ‘‘not at all’’; 4 = ‘‘almost constantly’’/‘‘very severe’’/‘‘very much’’). Perceived treatment requirement was rated from 0 to 3 (0 = ‘‘not at all’’; 3 = ‘‘strongly required’’). Cronbach’s alpha for individual symptom dimensions covering frequency, intensity, distress, and perceived treatment requirement was > 0.95 for pain, shortness of breath, dry mouth, lack of appetite, nausea, constipation, difficulty sleeping, irritability, anxiety, and sadness; and > 0.88 for tiredness. Items adressing lack of energy showed a Cronbach‘s alpha of 0.77. We used the GAD-7 German version26,27 to identify probable cases of generalized anxiety disorder and to assess severity. The GAD-7 is based on the DSM-IV diagnostic criteria for generalized anxiety disorder and has excellent reliability, as well as criterion, construct, factorial, and procedural validity. The seven items assess the frequency of core symptoms of generalized anxiety disorder within the past two weeks. Items are scored on a four-point Likert scale rated from 0 (‘‘not at all’’) to 3 (‘‘nearly every day’’) with a total score ranging from 0 to 21. A score up to 4 indicates the absence of generalized anxiety disorder; scores of 5 to 9 represent mild; scores of 10 to 14 represent moderate; and scores of 15 and higher represent severe anxiety symptom levels. 27 Cronbach‘s alpha of the GAD-7 was 0.79. Depression was measured through use of the PHQ-9 German version, the depression module of the Patient Health Questionnaire.28 The PHQ-9 is based on the DSM-IV diagnostic criteria for major depressive disorder and has excellent reliability and validity. The nine items assess the frequency of depressive symptoms within the past two weeks. Items are scored on a four-point Likert scale rated from 0 (‘‘not at all’’) to 3 (‘‘nearly every day’’) with a total score ranging from 0 to 27. In addition to the sum score for measuring depression severity, the PHQ-9 offers a categorical algorithm based on modified criteria of ‘‘major depressive disorder,’’ according to DSM-IV. A score up to 4 indicates the absence of depression; scores of 5 to 9 represent mild; scores of 10 to 14 represent moderate; and scores of 15 and higher represent severe depression.29 In our sample of caregivers, Cronbach‘s alpha of the PHQ-9 was 0.84. In addition, both caregivers and patients answered a single question concerning the patients’ subjective overall condition at the current time point on a five-grade scale ranging from ‘‘very good’’ to ‘‘very bad.’’
ANXIETY AND DEPRESSION IN FAMILY CAREGIVERS
1097
Table 1. Patient Characteristics (n = 33)
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
N patients Age Gender Female Male Performance status WHO (median) Karnofsky index (median) Malignant disease Lung cancer Gastrointestinal cancer Gynecologic cancer Urologenital cancer Cancer of unknown primary Other Median number of locations of metastases
different physical or psychological symptoms (range 2–12) (see Table 1).
%
Anxiety and depression in family caregivers
62 years (range 37–79) 19 14
Fifty-five percent of male and 36% of female caregivers were classified as having moderate or severe anxiety (M = 8.41, SD = 4.65, range 1–16). Thirty-six percent of male caregivers compared to 14% of female caregivers were classified as having moderate or severe depression (M = 7.34, SD = 5.49, range 0–23). No significant gender differences were found, although there was a trend towards higher psychological distress in male caregivers (see Table 2). Caregivers’ anxiety and depression were significantly correlated (r = .65; p < 0.001). No significant differences between spouses and other caregivers were found in anxiety ( p = 0.986) and depression ( p = 0.087). Caregivers’ anxiety and depression were not associated with patient characteristics such as age ( p > 0.212), gender ( p > 0.420), primary tumor entity ( p > 0.456), presence of metastases ( p > 0.162), or disease duration ( p > 0.481). Depression, but not anxiety, correlated significantly with the patients’ Karnofsky performance status ( p < 0.05).
58 42
3 (range 2–4) 40% (range 20%–80%) 11 7 5 3 3 4
33 21 15 9 9 12 3 (range 2–4)
Statistical methods Data of all patients and relatives included in the underlying study were first entered in a central Excel database. All statistical analyses were conducted using SPSS 18.0 (SPSS Inc., Chicago, IL). Bivariate associations between variables were calculated using Pearson’s Product-Moment or Spearman’s correlation coefficient. Dependent variables were tested for differences between any of the groups (caregivers and patients) using analysis of variance (ANOVA). Two-tailed significance tests were conducted using a significance level of p < 0.05.
Association between caregivers’ anxiety and depression and their evaluation of patient symptoms The level of caregivers anxiety was neither significantly associated with their perspective on the patients’ overall physical condition (r = 0.29; p = 0.115) nor with the patients‘ perspective on their overall condition (r = 0.15; p = 0.423). The caregivers’ depression was significantly correlated with their perspective (r = 0.36; p = 0.048) and the patients’ perspective (r = 0.39; p = 0.026) on the patients’ overall condition. For detailed analysis the caregivers’ anxiety was correlated with the 48 symptom dimensions consisting of the 4 MSAS_SF categories and 12 symptoms. Analyses revealed significant correlations between caregivers’ anxiety and their perspective on the patients’ anxiety: Caregivers’ anxiety correlated with frequency (r = 0.49; p = 0.004); intensity (r = 0.45; p = 0.008); and distress level (r = 0.38; p = 0.032) of the patients’ anxiety. Caregivers’ overall score for patients’ anxiety was significantly associated with their own anxiety (r = 0.42; p = 0.016) (see Table 3).
Results Characteristics of patients and their caregivers All measures were fully completed by 33 patients and their 33 caregivers. The response rate was 73% (33 out of 45 patients). Sixty-seven percent of caregivers were female, 46% were the patient‘s spouse, 18% were siblings, 18% were friends, 12% were children, and 3% each were parents or cousins. Average patient age was 62 (SD 11). Patients suffered from malignant diseases with a previous disease duration of 15 months (range 1–63); they suffered from a median of eight
Table 2. Anxiety and Depression in Female and Male Caregivers Female caregivers (n = 22)
Total
a
Mean anxiety (M/SD) No anxiety Mild anxiety Moderate anxiety Severe anxiety Mean depression (M/SD)b No depression Mild depression Moderate depression Severe depression a
n
%
n
%
n
%
P
8.41 10 9 10 4 7.34 13 13 2 5
4.65 30.3 27.3 30.3 12.1 5.49 39.4 39.4 6.1 15.2
7.94 7 7 6 2 6.61 10 9 0 3
4.43 31.8 31.8 27.3 9.1 4.67 45.5 40.9 13.6
9.36 3 2 4 2 8.82 3 4 2 2
5.14 27.3 18.2 36.4 18.2 6.87 27.3 36.4 18.2 18.2
0.417
GAD-7 total score ranging from 0 to 21. PHQ-9 total score ranging from 0 to 27.
b
Male caregivers (n = 11)
0.282
1098
OECHSLE ET AL.
Table 3. Correlation Between Caregivers’ Anxiety and Depression and Their Evaluation of Patient Symptoms
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Anxiety r Pain Frequency Intensity Distress Treatment Total Shortness of breath Frequency Intensity Distress Treatment Total Tiredness Frequency Intensity Distress Treatment Total Lack of energy Frequency Intensity Distress Treatment Total Dry mouth Frequency Intensity Distress Treatment Total Lack of appetite Frequency Intensity Distress Treatment Total Nausea Frequency Intensity Distress Treatment Total Constipation Frequency Intensity Distress Treatment Total Difficulty sleeping Frequency Intensity Distress Treatment Total Irritability Frequency Intensity Distress
.32 .25 .23 .12 .25 .28 .22 .28 .22 .26
Depression r .21 .17 .19 - .02 .15 .38* .37* .39* .32 .37
- .31 - .35 - .30 - .21 - .32
- .06 - .16 - .12 .01 - .09
- .02 - .05 .14 - .08 - .01
.18 .28 .04 .04 .15
.02 .08 .14 .13 .09
.26 .29 .34 .34 .31
- .01 - .08 - .04 - .09 - .06
.10 .07 .09 .04 .08
.16 .13 .17 .17 .17
.44* .48** .46** .39* .46**
.10 .16 .15 .18 - .08
.09 .15 .15 .17 - .09
.07 - .02 .04 .07 .04
.01 - .11 - .05 .03 - .04
.15 .18 .09
.27 .31 .20 (continued)
Table 3. (Continued)
Treatment Total Anxiety Frequency Intensity Distress Treatment Total Sadness Frequency Intensity Distress Treatment Total
Anxiety r
Depression r
.27 .18
.35* .29
.49** .45** .38* .29* .42*
.50** .46** .41* .38* .45**
.18 .12 .03 .05 .10
.16 .07 .08 .18 .12
*p-value < 0.005. **p-value < 0.001.
Significant correlations between caregivers’ depression and their evaluation of patients’ symptoms were demonstrated for frequency (r = 0.38; p = 0.030), intensity (r = 0.37; p = 0.037), distress level (r = 0.39; p = 0.029), and total score of shortness of breath (r = 0.37; p = 0.036) as well as for frequency (r = 0.44; p = 0.013), intensity (r = 0.48; p = 0.006), distress level (r = 0.46; p = 0.008), treatment requirement (r = 0.39; p = 0.027), and total score for nausea (r = 0.46; p = 0.008). Further significant correlations could be found for treatment requirements of patients’ irritability (r = 0.35; p = 0.048) as well as frequency (r = .50; p = 0.003), intensity (r = .46; p = 0.007), distress level (r = .41; p = 0.019), treatment requirement (r = .38; p = 0.030), and total score for anxiety (r = .45; p = 0.009) (see Table 3). Differences between caregivers’ and patients’ evaluations of symptoms Caregivers’ anxiety and depression were correlated with the mean differences between caregivers’ and patients’ scoring of symptoms. This revealed caregiver anxiety significantly impacted the discrepancy between their perspective and that of patients regarding frequency, intensity, and treatment requirements for shortness of breath ( p < 0.05); frequency of nausea ( p = 0.032); and frequency, intensity, and distress level from anxiety ( p < 0.01) (see Table 4). The overall number of discordant scorings between patients and caregivers demonstrated significant correlation with caregivers’ anxiety score (r = .37; p = 0.034) but was not associated with caregivers’ gender or the kind of relationship ( p > 0.05). Further, significant impact of caregivers’ depression was found on the discrepancy with patients’ perspective on their distress due to constipation (r = .38; p = 0.029) and on intensity and distress from anxiety ( p < 0.05). No significant impact of depression on the overall number of discordant scorings could be demonstrated ( p = 0.134). Caregivers’ over- or underestimation of symptom burden The total score of the caregivers’ overestimation of patients’ symptoms showed a mean value of 26.8 (SD = 14.7; range
Table 4. Correlation Between Caregivers’ Anxiety and Depression and the Differences Between Caregivers’ and Patients’ Evaluations of Symptoms Caregivers Mean difference
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Symptom Pain Frequency Intensity Distress Treatment Shortness of breath Frequency Intensity Distress Treatment Tiredness Frequency Intensity Distress Treatment Lack of energy Frequency Intensity Distress Treatment Dry mouth Frequency Intensity Distress Treatment Lack of appetite Frequency Intensity Distress Treatment Nausea Frequency Intensity Distress Treatment Constipation Frequency Intensity Distress Treatment Difficulty sleeping Frequency Intensity Distress Treatment Irritability Frequency Intensity Distress Treatment Anxiety Frequency Intensity Distress Treatment Sadness Frequency Intensity Distress Treatment a
a
Anxiety
M
SD
Range
0 0.67 0.55 0.33
0 1.02 1.12 0.89
0 0–4 0–4 0–3
– .01 .26 .14
– .988 .152 .440
– .07 .07 .07
– .684 .719 .691
0.49 0.61 0.73 0.61
0.71 0.75 1.13 1.00
0–3 0–2 0–4 0–3
.38 .43 .27 .38
.030 .013 .135 .029
.05 .25 .07 .12
.797 .166 .681 .518
0.58 0.33 0.46 0.70
0.87 0.60 0.79 0.92
0–3 0–2 0–3 0–3
- .07 .02 .10 - .07
.703 .910 .569 .711
- .04 .01 - .04 - .08
.814 .978 .817 .642
0.76 0.61 0.46 0.46
1.06 0.86 0.79 0.79
0–4 0–3 0–3 0–3
- .21 - .08 .09 - .07
.238 .669 .634 .714
- .24 .03 .03 - .07
.181 .871 .869 .697
0.27 0.27 0.73 0.24
0.76 0.80 1.13 0.66
0–3 0–4 0–4 0–3
- .12 .01 .27 .17
.501 .991 .135 .353
.04 .05 .07 .03
.839 .786 .681 .892
0.97 1.03 1.00 0.67
1.26 1.21 1.28 1.02
0–4 0–4 0–4 0–3
- .14 - .24 - .23 - .09
.451 .175 .194 .602
.13 .01 .03 .11
.474 .974 .863 .532
0.48 0.64 0.64 0.55
0.71 0.96 1.09 0.97
0–2 0–3 0–4 0–3
.38 .20 .21 .22
.032 .254 .250 .223
.30 .30 .23 .12
.088 .089 .198 .520
0.39 0.36 0.55 0.39
0.79 0.90 0.94 0.83
0–3 0–4 0–3 0–3
.24 .23 .30 .28
.172 .208 .085 .113
.19 .24 .38 .20
.285 .189 .029 .256
0.27 0.18 0.27 0.09
0.63 0.39 0.76 0.29
0–2 0–1 0–4 0–1
.22 .08 - .07 .26
.224 .669 .684 .149
.29 .13 - .08 .34
.102 .471 .656 .055
0.42 0.46 0.49 0.30
0.71 0.76 1.06 0.73
0–2 0–2 0–4 0–3
- .10 - .16 - .05 .16
.570 .366 .789 .388
.16 .03 .07 .18
.367 .872 .711 .305
0.67 0.73 0.88 0.73
1.08 1.15 1.24 1.13
0–4 0–4 0–4 0–3
.46 .49 .47 .23
.007 .004 .006 .192
.30 .43 .43 .24
.093 .012 .012 .176
0.76 0.91 0.88 1.00
0.97 1.13 1.14 1.28
0–3 0–3 0–4 0–3
.11 - .02 - .14 - .01
.554 .914 .446 .964
.05 - .06 - .03 .11
.769 .751 .883 .560
Mean difference between caregivers’ and patients’ symptom evaluation.
1099
r
Depression P
r
P
1100 6–65). In contrast, the total score of underestimation was lower, with a mean value of 14.1 (SD = 11.8; range 1–49). No gender or age differences were found among caregivers for overestimation ( p > 0.05) and for underestimation of patients’ symptoms. Spouses had a significantly lower underestimation score compared to other family caregivers (M = 6.33, SD = 5.9 versus M = 20.56, SD = 11.8; p < 0.001); however, no differences were found for overestimation ( p = 0.278). Caregivers’ anxiety (r = .02; p = 0.926) and depression (r = -.08; p = 0.676) were not significantly associated with an underestimation of symptoms. However, there was a trend towards a higher risk for overestimation in caregivers with higher levels of anxiety (r = .32; p = 0.074) and depression (r = .33; p = 0.061).
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Discussion The underlying prospective questionnaire analysis has investigated anxiety and depression in 33 caregivers of terminally ill cancer patients on a specialized inpatient palliative care ward, using GAD-7 and PHQ-9 questionnaires. Further, the caregivers‘ perspective was compared with the patients’ perspective on their symptom burden, each assessed by MSAS-SF questionnaires synchronously completed within 24 hours after the patients’ admission to the palliative care ward. Mild to severe symptoms of anxiety were found in a total of 70%, and depression in 61% of caregivers. These rates are comparable to previous studies, e.g., a study of CostaRequena and colleagues who reported a proportion of 76% of anxiety and 77% of depression in 159 family caregivers of patients in a palliative care unit.1 In our study, prevalence and intensity of anxiety and depression in caregivers correlated significantly with each other and were independent of caregivers’ gender. There was a clear trend towards higher symptom distress among male caregivers. Concerning caregiver’s gender, a study by Grov and colleagues had suggested a significant impact of female gender on the caregiver’s depression,3 whereas CostaRequena and colleagues had demonstrated a higher impact of caregivers’ self-esteem and distress than of sociodemographic factors such as caregiver gender or age.1 The impact of the relationship between patients and caregivers has rarely been investigated in previous studies. Palos and colleagues have reported significantly higher symptom levels in family members compared to nonfamily caregivers.5 In addition, Siminoff and colleagues could demonstrate that spouse caregivers are at higher risk for depression than other family caregivers.10 Our findings also show a trend towards higher depression in spouses compared to other family caregivers, indicating the possible need for psycho-oncological support also during the bereavement phase. Siminoff and colleagues reported significant impact of familiar cohesion, expressiveness, and familiar conflicts on depressive symptoms in caregivers. The analysis of patient-specific factors revealed a significant correlation of depression, but not anxiety, with the patients’ Karnofsky performance status and overall condition. However caregivers’ anxiety and depression showed no correlation with patients’ age, gender, primary tumor, extent of disease, previous disease duration, or number of present symptoms. In contrast, previous studies have suggested an impact of poorly treated symptoms, especially pain, fatigue, or weakness, as well as of rapidly progressive disease, on the burden of family caregivers.5,8,30 Fri+riksdo´ttir and colleagues
OECHSLE ET AL. demonstrated a correlation between anxiety and depression and the time frame from initial diagnosis;2 however, as they revealed five years from diagnosis as the relevant time point, this could not be reproduced in this study with shorter median disease duration. Previous studies have suggested direct correlations between psychological symptoms in caregivers and psychological symptoms in palliative care patients.8–10 Hodges and colleagues even reported equal levels of psychological distress of patients and their carers.9 In our study, caregivers’ anxiety and depression correlated significantly with the evaluation of patients’ anxiety in both perspectives: the caregivers’ estimation of the patients’ anxiety and the patients’ own scoring of their subjective level of anxiety. Further studies should investigate possible reciprocal effects between patients’ and caregivers’ level of anxiety and depression. In our analysis, caregivers’ anxiety showed a significant impact on their overall scores for the patients’ anxiety. Depression significantly influenced their perspective on the patients’ shortness of breath, nausea, irritability, and anxiety. The overall number of discordant scorings demonstrated a significant correlation with caregivers’ anxiety, but was independent from caregivers’ depression. Caregivers’ anxiety or depression showed no influence on their underestimation of patients’ symptoms, but depressive and anxious caregivers tended to overestimate patients’ symptoms. The relationship between patient and caregiver seems to influence the risk for symptom underestimation by spouses. In a similar study, McPherson and colleagues assessed patients’ and caregivers’ perspective on patients’ symptoms using the MSAS. They demonstrated that caregivers’ emotional state, their burden of providing care, and male gender were significantly correlated with levels of disparity on some aspects.14 Regarding anxiety and depression as a part of caregivers’ emotional state, this study seems to strengthen the results of our analysis. In addition, they demonstrated a higher correlation between caregivers and patients for physical than for psychological symptoms, which had already been suggested in an analysis of Lobchuk and colleagues12,14 Robinson and colleagues even described a substantial magnitude of discrepancies between the patients and their caregivers concerning the patients’ psychological functioning and recommended avoiding any substitution of information from family caregivers into assessment of cancer patients’ psychological functioning.15 Our study has several limitations, as it is a cross-sectional study with limited information about the possible interaction effects between patients’ and caregivers’ physical and psychological symptom burden. The overall small sample size represents a methodological restriction and reduces the extent to which our findings can be generalized. Another limitation is lack of inclusion of further caregiver-related psychosocial aspects, such as age, employment, or living arrangements; quality of life; or psychiatric morbidity, which have been seen as possible factors influencing the prevalence of anxiety and depression in relatives of cancer patients.1–5,7,35 In conclusion, about 70% of family caregivers of palliative care patients suffer from clinically relevant signs of anxiety and depression. Anxiety and depression have a significant impact on their perspective on patient symptoms, especially on anxiety, tiredness, nausea, and dyspnea. The palliative care team has to be conscious of these factors possibly influencing
ANXIETY AND DEPRESSION IN FAMILY CAREGIVERS the caregiver’s perspective. Integrative palliative care should offer psycho-oncological care for the caregivers on a routine basis to avoid misleading perspectives possibly influencing end-of-life treatment decisions.
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
References 1. Costa-Requena G, Cristo´fol R, Can˜ete J: Caregivers’ morbidity in palliative care unit: Predicting by gender, age, burden and self-esteem. Support Care Cancer 2012;20:1465–1470. 2. Friethriksdottir N, Saevarsdottir T, Halfdanardottir SI, Jonsdottir A, Magnusdottir H, Olafsdottir KL, et al.: Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncol 2011;50:252–258. 3. Grov EK, Dahl AA, Moum T, Fossa SD: Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 2005;16:1185–1191. 4. Grov EK, Fossa˚ SD, Sørebø O, Dahl AA: Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden. Soc Sci Med 2006;63: 2429–2439. 5. Palos GR, Mendoza TR, Liao K, Anderson KO, GarciaGonzalez A, Hahn K, et al.: Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer. Cancer 2011;117:1070–1079. 6. Rosenberger C, Hocker A, Cartus M, Schulz-Kindermann F, Harter M, Mehnert A: Outpatient psycho-oncological care for family members and patients: Access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol 2012;62:185–194. 7. Valeberg BT, Grov EK: Symptoms in the cancer patient: Of importance for their caregivers’ quality of life and mental health? Eur J Oncol Nurs 2013;17:46–51. 8. Harding R, Higginson IJ, Donaldson N: The relationship between patient characteristics and carer psychological status in home palliative cancer care. Support Care Cancer 2003;11:638–643. 9. Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 2005;60:1–12. 10. Siminoff LA, Wilson-Genderson M, Baker S: Depressive symptoms in lung cancer patients and their family caregivers and the influence of family environment. Psycho-oncology 2010;19:1285–1293. 11. Miaskowski C, Zimmer EF, Barrett KM, Dibble SL, Wallhagen M: Differences in patients’ and family caregivers’ perceptions of the pain experience influence patient and caregiver outcomes. Pain 1997;72:217–226. 12. Lobchuk MM, Degner LF: Symptom experiences: Perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. J Clin Oncol 2002; 20:3495–3507. 13. Lobchuk MM, Vorauer JD: Family caregiver perspectivetaking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med 2003;57:2379–2384. 14. McPherson CJ, Wilson KG, Lobchuk MM, Brajtman S: Family caregivers’ assessment of symptoms in patients with advanced cancer: Concordance with patients and factors affecting accuracy. J Pain Symptom Manage 2008;35:70–82. 15. Robinson JA, Crawford GB: Do palliative patients and carers agree about patients’ psychological functioning? Palliat Support Care 2010;8:69–74. 16. Silveira MJ, Given CW, Given B, Rosland AM, Piette JD: Patient-caregiver concordance in symptom assessment and
1101
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
improvement in outcomes for patients undergoing cancer chemotherapy. Chronic Illn 2010;6:46–56. Sneeuw KC, Aaronson NK, Sprangers MA, Detmar SB, Wever LD, Schornagel JH: Value of caregiver ratings in evaluating the quality of life of patients with cancer. J Clin Oncol 1997;15:1206–1217. Sneeuw KC, Aaronson NK, Sprangers MA, Detmar SB, Wever LD, Schornagel JH: Evaluating the quality of life of cancer patients: Assessments by patients, significant others, physicians and nurses. Br J Cancer 1999;81:87–94. Yesxilbalkan OU, Okgu¨n A: Patients’ self reports and caregivers’ perception of symptoms in Turkish cancer patients. Eur J Oncol Nurs 2010;14:119–124. Milne DJ, Mulder LL, Beelen HCM, Schofield P, Kempen GIJM, Aranda S: Patients’ self-report and family caregivers’ perception of quality of life in patients with advanced cancer: How do they compare? Eur J Cancer Care 2006;15:125–132. Wennman-Larsen A, Tishelman C, Wengstro¨m Y, Gustavsson P: Factors influencing agreement in symptom ratings by lung cancer patients and their significant others. J Pain Symptom Manage 2007;33:146–155. Portenoy RK, Thaler HT, Kornblith AB, Lepore JM, Friedlander-Klar H, Kiyasu E, et al.: The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 1994;30:1326–1336. Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler HT: The Memorial Symptom Assessment Scale Short Form (MSAS-SF). Cancer 2000;89:1162–1171. Oechsle K, Goerth K, Bokemeyer C, Mehnert A: Symptom burden in palliative care patients: Perspective of patients, their caregivers and attending physicians. Support Care Cancer 2013;21:1955–1962. Webber K, Davies AN: Validity of the Memorial Symptom Assessment Scale-Short Form Psychological Subscales in Advanced Cancer Patients. J Pain Symptom Manage 2011;42:761–767. Spitzer RL, Kroenke K, Williams JBW, Lo¨we B: A brief measure for assessing generalized anxiety disorder: The GAD-7. Arch Intern Med 2006;166:1092–1097. Lo¨we B, Decker O, Mu¨ller S, Bra¨hler E, Schellberg D, Herzog W, et al.: Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care 2008;46:266–274. Lo¨we B, Kroenke K, Herzog W, Gra¨fe K: Measuring depression outcome with a brief self-report instrument: Sensitivity to change of the Patient Health Questionnaire (PHQ-9). J Affect Disord 2004;81:61–66. Lo¨we B, Spitzer RL, Gra¨fe K, Kroenke K, Quenter A, Zipfel S, et al.: Comparative validity of three screening questionnaires for DSM-IV depressive disorders and physicians’ diagnoses. J Affect Disord 2004;78:131–140.
Address correspondence to: Karin Oechsle, MD Department of Oncology, Hematology, and BMT with section of Pneumology Hubertus Wald University Comprehensive Cancer Center Hamburg University Medical Center Eppendorf Martinistrasse 52 20246 Hamburg Germany E-mail: [email protected]
Anxiety and Depression in Caregivers of Terminally Ill Cancer Patients: Impact on Their Perspective of the Patients’ Symptom Burden
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Karin Oechsle, MD,1 Kathrin Goerth,1 Carsten Bokemeyer, MD,1 and Anja Mehnert, PhD 2,3
Abstract
Background and Objective: Given the important role caregivers play in palliative care planning and decision making, anxiety and depression in caregivers of terminally ill cancer patients and their impact on the caregivers’ evaluation of the patients’ physical and psychological symptom burden were analyzed. Design and subjects: Thirty-three patients and their caregivers were recruited through the University Medical Center palliative care inpatient ward < 24h after admission. Measurements: Patients completed the Memorial Symptom Assessment Scale (MSAS). Caregivers were instructed to evaluate the symptom burden of the patient. Anxiety and depression were measured in caregivers using the PHQ-9 and the GAD-7. Results: Fifty-five percent of male caregivers and 36% of female caregivers showed moderate or severe anxiety; 36% of male caregivers compared to 14% of female caregivers had moderate or severe depression. Caregivers’ anxiety was associated with a discrepancy in the patients’ symptom evaluation for shortness of breath ( p < 0.05); nausea (p < 0.05); and frequency, intensity, and distress due to anxiety ( p < 0.01). Depression was associated with a discrepancy in the patients’ evaluation of distress due to constipation (p < 0.05), as well as intensity and distress due to anxiety ( p < 0.05). Both the caregivers’ anxiety and depression were not significantly associated with an underestimation of symptoms. There was a trend towards a higher risk of overestimation in caregivers with higher levels of anxiety (r = 0.32) ( p = 0.07) and depression (r = 0.33) ( p = 0.06). Conclusion: Integrative palliative care should offer psychooncological care for the caregivers on a routine basis to avoid misleading perspectives possibly influencing end-of-life treatment decisions. Introduction
T
he occurrence of an incurable malignant disease in a loved person is frequently accompanied by significant burden for the patient‘s relatives and caregivers. Previous studies have described levels of distress, sadness, anxiety, and depression of about 40% to 70% in caregivers of patients with advanced cancer, particularly in the late palliative phase.1–6 In addition, studies report significant rates of unmet needs and a significant decrease in quality of life in caregivers compared to normal population cohorts.2,3 Possible factors influencing anxiety and depression in caregivers of palliative care patients are heterogeneous. Some studies discuss differences between male or female relatives, the family caregivers’ or the patients’
age, the patients’ symptom profile as well as the relatives‘ self-esteem, unmet needs, or quality of life.1–5,7 Further studies have reported significant correlations between psychological symptoms in relatives and psychological symptoms or decreased psychosocial functioning in the palliative care patients.8–10 Miaskowski and colleagues11 reported findings suggesting that differences in patients’ and caregivers‘ perception of the pain experience is associated with deleterious outcomes for the patient and the family caregiver, such as higher mood disturbance and lower quality of life. One of the main characteristics of palliative care is the involvement of the patient‘s caregiver into comprehensive patient care. Based on this principle, the relative’s perspective on the patient‘s symptom burden is usually integrated into
1 Department of Oncology, Hematology and Bone Marrow Transplantation with section of Pneumology, Hubertus Wald University Comprehensive Cancer Center Hamburg, 3Institute and Outpatient Clinic of Medical Psychology, University Medical Center HamburgEppendorf, Hamburg, Germany. 2 Section of Psychosocial Oncology, Department of Medical Psychology and Medical Sociology, University Medical Center Leipzig, Saxony, Germany. Accepted May 9, 2013.
1095
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
1096 symptom assessment and treatment decisions, but less is known about specific factors possibly influencing caregivers’ perspective. Some previous studies have started to evaluated concordances and differences in the perspectives on the patients’ symptoms between patients and their relatives.12–19 Milne and colleagues20 found that most caregivers were able to accurately rate the global quality of life, the level of functioning, and the degree of symptom distress experienced by the person they were caring for, when compared with the patient’s self-rating. However, caregiver ratings for physical domains tended to be more in agreement with those of patients compared to ratings of psychosocial domains. Other research comparing symptom ratings and health-related quality of life between significant others and lung cancer patients indicated that the levels of agreement were fair to good, but that significant others consistently rated the patients‘ symptoms higher and functioning lower than the patients do themselves.21 Agreement in dimensions of symptoms and functioning were influenced by gender, patient age, and significant others’ self-reported lack of family support, health problems, and caregiver esteem.21 Therefore, the purpose of this study was to assess the prevalence of anxiety and depression in caregivers of terminally ill cancer patients and to investigate factors possibly influencing anxiety and depression. Caregiver anxiety and depression levels should be compared with (1) their evaluation of patients’ symptoms, in terms of symptom frequency, intensity burden, and treatment requirement; and with (2) discrepancies between caregiver and patient evaluation of symptoms. Methods Study design Consecutive terminally ill cancer patients being admitted to the inpatient palliative care ward of the University Medical Center Hamburg-Eppendorf were able to enter this study between November 2010 and September 2011. Admission to the inpatient palliative care ward was possible for patients suffering from incurable and progressive cancer after completion of active oncologic treatment with presence of significant physical and psychosocial symptoms prohibiting further care at home or in nonspecialized inpatient wards. Further inclusion criteria were age over 18 years, sufficient cognitive function and adequate knowledge of German language to provide written informed consent and to complete a modified version of the Memorial Symptom Assessment Scale Short Form (MSAS-SF),22,23 a validated self-report questionnaire, within 24 hours after admission to the inpatient palliative care ward (data on patient results have been published by our working group).24 Simultaneously, the caregiver of the participating patient was asked to complete a corresponding version of the MSAS-SF as well as additional questionnaires measuring anxiety and depression demonstrating their perspective on patients’ symptom burden. Both, patients and caregivers were approached by a research study assistant. Caregivers and patients were instructed not to exchange information and communicate with each other while answering the questionnaire at the inpatient palliative care ward. Measures Patient and caregiver demographics were obtained via selfreport, information about diagnosis, prior and current disease
OECHSLE ET AL. specifics, and performace status (WHO and Karnofsky); symptomatic treatment data were taken from the patients’ case files. Symptom burden was measured using a modified German version of the MSAS-SSF.22,23 The MSAS-SF has been validated in advanced cancer patients.25 Given the limited capacities of our terminally ill patients, we restricted the MSAS-SF to 12 symptoms—9 items addressed physical symptoms (pain, shortness of breath, tiredness, lack of energy, dry mouth, lack of appetite, nausea, constipation, and difficulty sleeping) and 3 addressed psychological symptoms (irritability, anxiety, and sadness). Three categories—symptom frequency (‘‘How often did you have it?’’), symptom intensity (‘‘How severe was it usually?’’), and symptom distress (‘‘How much does it distress or bother you?’’)—were extended by a fourth category, perceived treatment requirement (‘‘How important is treatment of this symptom?’’). The standard MSAS-SF categories of frequency, intensity, and distress were rated on a scale from 0 to 4 (0 = ‘‘not at all’’; 4 = ‘‘almost constantly’’/‘‘very severe’’/‘‘very much’’). Perceived treatment requirement was rated from 0 to 3 (0 = ‘‘not at all’’; 3 = ‘‘strongly required’’). Cronbach’s alpha for individual symptom dimensions covering frequency, intensity, distress, and perceived treatment requirement was > 0.95 for pain, shortness of breath, dry mouth, lack of appetite, nausea, constipation, difficulty sleeping, irritability, anxiety, and sadness; and > 0.88 for tiredness. Items adressing lack of energy showed a Cronbach‘s alpha of 0.77. We used the GAD-7 German version26,27 to identify probable cases of generalized anxiety disorder and to assess severity. The GAD-7 is based on the DSM-IV diagnostic criteria for generalized anxiety disorder and has excellent reliability, as well as criterion, construct, factorial, and procedural validity. The seven items assess the frequency of core symptoms of generalized anxiety disorder within the past two weeks. Items are scored on a four-point Likert scale rated from 0 (‘‘not at all’’) to 3 (‘‘nearly every day’’) with a total score ranging from 0 to 21. A score up to 4 indicates the absence of generalized anxiety disorder; scores of 5 to 9 represent mild; scores of 10 to 14 represent moderate; and scores of 15 and higher represent severe anxiety symptom levels. 27 Cronbach‘s alpha of the GAD-7 was 0.79. Depression was measured through use of the PHQ-9 German version, the depression module of the Patient Health Questionnaire.28 The PHQ-9 is based on the DSM-IV diagnostic criteria for major depressive disorder and has excellent reliability and validity. The nine items assess the frequency of depressive symptoms within the past two weeks. Items are scored on a four-point Likert scale rated from 0 (‘‘not at all’’) to 3 (‘‘nearly every day’’) with a total score ranging from 0 to 27. In addition to the sum score for measuring depression severity, the PHQ-9 offers a categorical algorithm based on modified criteria of ‘‘major depressive disorder,’’ according to DSM-IV. A score up to 4 indicates the absence of depression; scores of 5 to 9 represent mild; scores of 10 to 14 represent moderate; and scores of 15 and higher represent severe depression.29 In our sample of caregivers, Cronbach‘s alpha of the PHQ-9 was 0.84. In addition, both caregivers and patients answered a single question concerning the patients’ subjective overall condition at the current time point on a five-grade scale ranging from ‘‘very good’’ to ‘‘very bad.’’
ANXIETY AND DEPRESSION IN FAMILY CAREGIVERS
1097
Table 1. Patient Characteristics (n = 33)
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
N patients Age Gender Female Male Performance status WHO (median) Karnofsky index (median) Malignant disease Lung cancer Gastrointestinal cancer Gynecologic cancer Urologenital cancer Cancer of unknown primary Other Median number of locations of metastases
different physical or psychological symptoms (range 2–12) (see Table 1).
%
Anxiety and depression in family caregivers
62 years (range 37–79) 19 14
Fifty-five percent of male and 36% of female caregivers were classified as having moderate or severe anxiety (M = 8.41, SD = 4.65, range 1–16). Thirty-six percent of male caregivers compared to 14% of female caregivers were classified as having moderate or severe depression (M = 7.34, SD = 5.49, range 0–23). No significant gender differences were found, although there was a trend towards higher psychological distress in male caregivers (see Table 2). Caregivers’ anxiety and depression were significantly correlated (r = .65; p < 0.001). No significant differences between spouses and other caregivers were found in anxiety ( p = 0.986) and depression ( p = 0.087). Caregivers’ anxiety and depression were not associated with patient characteristics such as age ( p > 0.212), gender ( p > 0.420), primary tumor entity ( p > 0.456), presence of metastases ( p > 0.162), or disease duration ( p > 0.481). Depression, but not anxiety, correlated significantly with the patients’ Karnofsky performance status ( p < 0.05).
58 42
3 (range 2–4) 40% (range 20%–80%) 11 7 5 3 3 4
33 21 15 9 9 12 3 (range 2–4)
Statistical methods Data of all patients and relatives included in the underlying study were first entered in a central Excel database. All statistical analyses were conducted using SPSS 18.0 (SPSS Inc., Chicago, IL). Bivariate associations between variables were calculated using Pearson’s Product-Moment or Spearman’s correlation coefficient. Dependent variables were tested for differences between any of the groups (caregivers and patients) using analysis of variance (ANOVA). Two-tailed significance tests were conducted using a significance level of p < 0.05.
Association between caregivers’ anxiety and depression and their evaluation of patient symptoms The level of caregivers anxiety was neither significantly associated with their perspective on the patients’ overall physical condition (r = 0.29; p = 0.115) nor with the patients‘ perspective on their overall condition (r = 0.15; p = 0.423). The caregivers’ depression was significantly correlated with their perspective (r = 0.36; p = 0.048) and the patients’ perspective (r = 0.39; p = 0.026) on the patients’ overall condition. For detailed analysis the caregivers’ anxiety was correlated with the 48 symptom dimensions consisting of the 4 MSAS_SF categories and 12 symptoms. Analyses revealed significant correlations between caregivers’ anxiety and their perspective on the patients’ anxiety: Caregivers’ anxiety correlated with frequency (r = 0.49; p = 0.004); intensity (r = 0.45; p = 0.008); and distress level (r = 0.38; p = 0.032) of the patients’ anxiety. Caregivers’ overall score for patients’ anxiety was significantly associated with their own anxiety (r = 0.42; p = 0.016) (see Table 3).
Results Characteristics of patients and their caregivers All measures were fully completed by 33 patients and their 33 caregivers. The response rate was 73% (33 out of 45 patients). Sixty-seven percent of caregivers were female, 46% were the patient‘s spouse, 18% were siblings, 18% were friends, 12% were children, and 3% each were parents or cousins. Average patient age was 62 (SD 11). Patients suffered from malignant diseases with a previous disease duration of 15 months (range 1–63); they suffered from a median of eight
Table 2. Anxiety and Depression in Female and Male Caregivers Female caregivers (n = 22)
Total
a
Mean anxiety (M/SD) No anxiety Mild anxiety Moderate anxiety Severe anxiety Mean depression (M/SD)b No depression Mild depression Moderate depression Severe depression a
n
%
n
%
n
%
P
8.41 10 9 10 4 7.34 13 13 2 5
4.65 30.3 27.3 30.3 12.1 5.49 39.4 39.4 6.1 15.2
7.94 7 7 6 2 6.61 10 9 0 3
4.43 31.8 31.8 27.3 9.1 4.67 45.5 40.9 13.6
9.36 3 2 4 2 8.82 3 4 2 2
5.14 27.3 18.2 36.4 18.2 6.87 27.3 36.4 18.2 18.2
0.417
GAD-7 total score ranging from 0 to 21. PHQ-9 total score ranging from 0 to 27.
b
Male caregivers (n = 11)
0.282
1098
OECHSLE ET AL.
Table 3. Correlation Between Caregivers’ Anxiety and Depression and Their Evaluation of Patient Symptoms
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Anxiety r Pain Frequency Intensity Distress Treatment Total Shortness of breath Frequency Intensity Distress Treatment Total Tiredness Frequency Intensity Distress Treatment Total Lack of energy Frequency Intensity Distress Treatment Total Dry mouth Frequency Intensity Distress Treatment Total Lack of appetite Frequency Intensity Distress Treatment Total Nausea Frequency Intensity Distress Treatment Total Constipation Frequency Intensity Distress Treatment Total Difficulty sleeping Frequency Intensity Distress Treatment Total Irritability Frequency Intensity Distress
.32 .25 .23 .12 .25 .28 .22 .28 .22 .26
Depression r .21 .17 .19 - .02 .15 .38* .37* .39* .32 .37
- .31 - .35 - .30 - .21 - .32
- .06 - .16 - .12 .01 - .09
- .02 - .05 .14 - .08 - .01
.18 .28 .04 .04 .15
.02 .08 .14 .13 .09
.26 .29 .34 .34 .31
- .01 - .08 - .04 - .09 - .06
.10 .07 .09 .04 .08
.16 .13 .17 .17 .17
.44* .48** .46** .39* .46**
.10 .16 .15 .18 - .08
.09 .15 .15 .17 - .09
.07 - .02 .04 .07 .04
.01 - .11 - .05 .03 - .04
.15 .18 .09
.27 .31 .20 (continued)
Table 3. (Continued)
Treatment Total Anxiety Frequency Intensity Distress Treatment Total Sadness Frequency Intensity Distress Treatment Total
Anxiety r
Depression r
.27 .18
.35* .29
.49** .45** .38* .29* .42*
.50** .46** .41* .38* .45**
.18 .12 .03 .05 .10
.16 .07 .08 .18 .12
*p-value < 0.005. **p-value < 0.001.
Significant correlations between caregivers’ depression and their evaluation of patients’ symptoms were demonstrated for frequency (r = 0.38; p = 0.030), intensity (r = 0.37; p = 0.037), distress level (r = 0.39; p = 0.029), and total score of shortness of breath (r = 0.37; p = 0.036) as well as for frequency (r = 0.44; p = 0.013), intensity (r = 0.48; p = 0.006), distress level (r = 0.46; p = 0.008), treatment requirement (r = 0.39; p = 0.027), and total score for nausea (r = 0.46; p = 0.008). Further significant correlations could be found for treatment requirements of patients’ irritability (r = 0.35; p = 0.048) as well as frequency (r = .50; p = 0.003), intensity (r = .46; p = 0.007), distress level (r = .41; p = 0.019), treatment requirement (r = .38; p = 0.030), and total score for anxiety (r = .45; p = 0.009) (see Table 3). Differences between caregivers’ and patients’ evaluations of symptoms Caregivers’ anxiety and depression were correlated with the mean differences between caregivers’ and patients’ scoring of symptoms. This revealed caregiver anxiety significantly impacted the discrepancy between their perspective and that of patients regarding frequency, intensity, and treatment requirements for shortness of breath ( p < 0.05); frequency of nausea ( p = 0.032); and frequency, intensity, and distress level from anxiety ( p < 0.01) (see Table 4). The overall number of discordant scorings between patients and caregivers demonstrated significant correlation with caregivers’ anxiety score (r = .37; p = 0.034) but was not associated with caregivers’ gender or the kind of relationship ( p > 0.05). Further, significant impact of caregivers’ depression was found on the discrepancy with patients’ perspective on their distress due to constipation (r = .38; p = 0.029) and on intensity and distress from anxiety ( p < 0.05). No significant impact of depression on the overall number of discordant scorings could be demonstrated ( p = 0.134). Caregivers’ over- or underestimation of symptom burden The total score of the caregivers’ overestimation of patients’ symptoms showed a mean value of 26.8 (SD = 14.7; range
Table 4. Correlation Between Caregivers’ Anxiety and Depression and the Differences Between Caregivers’ and Patients’ Evaluations of Symptoms Caregivers Mean difference
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Symptom Pain Frequency Intensity Distress Treatment Shortness of breath Frequency Intensity Distress Treatment Tiredness Frequency Intensity Distress Treatment Lack of energy Frequency Intensity Distress Treatment Dry mouth Frequency Intensity Distress Treatment Lack of appetite Frequency Intensity Distress Treatment Nausea Frequency Intensity Distress Treatment Constipation Frequency Intensity Distress Treatment Difficulty sleeping Frequency Intensity Distress Treatment Irritability Frequency Intensity Distress Treatment Anxiety Frequency Intensity Distress Treatment Sadness Frequency Intensity Distress Treatment a
a
Anxiety
M
SD
Range
0 0.67 0.55 0.33
0 1.02 1.12 0.89
0 0–4 0–4 0–3
– .01 .26 .14
– .988 .152 .440
– .07 .07 .07
– .684 .719 .691
0.49 0.61 0.73 0.61
0.71 0.75 1.13 1.00
0–3 0–2 0–4 0–3
.38 .43 .27 .38
.030 .013 .135 .029
.05 .25 .07 .12
.797 .166 .681 .518
0.58 0.33 0.46 0.70
0.87 0.60 0.79 0.92
0–3 0–2 0–3 0–3
- .07 .02 .10 - .07
.703 .910 .569 .711
- .04 .01 - .04 - .08
.814 .978 .817 .642
0.76 0.61 0.46 0.46
1.06 0.86 0.79 0.79
0–4 0–3 0–3 0–3
- .21 - .08 .09 - .07
.238 .669 .634 .714
- .24 .03 .03 - .07
.181 .871 .869 .697
0.27 0.27 0.73 0.24
0.76 0.80 1.13 0.66
0–3 0–4 0–4 0–3
- .12 .01 .27 .17
.501 .991 .135 .353
.04 .05 .07 .03
.839 .786 .681 .892
0.97 1.03 1.00 0.67
1.26 1.21 1.28 1.02
0–4 0–4 0–4 0–3
- .14 - .24 - .23 - .09
.451 .175 .194 .602
.13 .01 .03 .11
.474 .974 .863 .532
0.48 0.64 0.64 0.55
0.71 0.96 1.09 0.97
0–2 0–3 0–4 0–3
.38 .20 .21 .22
.032 .254 .250 .223
.30 .30 .23 .12
.088 .089 .198 .520
0.39 0.36 0.55 0.39
0.79 0.90 0.94 0.83
0–3 0–4 0–3 0–3
.24 .23 .30 .28
.172 .208 .085 .113
.19 .24 .38 .20
.285 .189 .029 .256
0.27 0.18 0.27 0.09
0.63 0.39 0.76 0.29
0–2 0–1 0–4 0–1
.22 .08 - .07 .26
.224 .669 .684 .149
.29 .13 - .08 .34
.102 .471 .656 .055
0.42 0.46 0.49 0.30
0.71 0.76 1.06 0.73
0–2 0–2 0–4 0–3
- .10 - .16 - .05 .16
.570 .366 .789 .388
.16 .03 .07 .18
.367 .872 .711 .305
0.67 0.73 0.88 0.73
1.08 1.15 1.24 1.13
0–4 0–4 0–4 0–3
.46 .49 .47 .23
.007 .004 .006 .192
.30 .43 .43 .24
.093 .012 .012 .176
0.76 0.91 0.88 1.00
0.97 1.13 1.14 1.28
0–3 0–3 0–4 0–3
.11 - .02 - .14 - .01
.554 .914 .446 .964
.05 - .06 - .03 .11
.769 .751 .883 .560
Mean difference between caregivers’ and patients’ symptom evaluation.
1099
r
Depression P
r
P
1100 6–65). In contrast, the total score of underestimation was lower, with a mean value of 14.1 (SD = 11.8; range 1–49). No gender or age differences were found among caregivers for overestimation ( p > 0.05) and for underestimation of patients’ symptoms. Spouses had a significantly lower underestimation score compared to other family caregivers (M = 6.33, SD = 5.9 versus M = 20.56, SD = 11.8; p < 0.001); however, no differences were found for overestimation ( p = 0.278). Caregivers’ anxiety (r = .02; p = 0.926) and depression (r = -.08; p = 0.676) were not significantly associated with an underestimation of symptoms. However, there was a trend towards a higher risk for overestimation in caregivers with higher levels of anxiety (r = .32; p = 0.074) and depression (r = .33; p = 0.061).
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
Discussion The underlying prospective questionnaire analysis has investigated anxiety and depression in 33 caregivers of terminally ill cancer patients on a specialized inpatient palliative care ward, using GAD-7 and PHQ-9 questionnaires. Further, the caregivers‘ perspective was compared with the patients’ perspective on their symptom burden, each assessed by MSAS-SF questionnaires synchronously completed within 24 hours after the patients’ admission to the palliative care ward. Mild to severe symptoms of anxiety were found in a total of 70%, and depression in 61% of caregivers. These rates are comparable to previous studies, e.g., a study of CostaRequena and colleagues who reported a proportion of 76% of anxiety and 77% of depression in 159 family caregivers of patients in a palliative care unit.1 In our study, prevalence and intensity of anxiety and depression in caregivers correlated significantly with each other and were independent of caregivers’ gender. There was a clear trend towards higher symptom distress among male caregivers. Concerning caregiver’s gender, a study by Grov and colleagues had suggested a significant impact of female gender on the caregiver’s depression,3 whereas CostaRequena and colleagues had demonstrated a higher impact of caregivers’ self-esteem and distress than of sociodemographic factors such as caregiver gender or age.1 The impact of the relationship between patients and caregivers has rarely been investigated in previous studies. Palos and colleagues have reported significantly higher symptom levels in family members compared to nonfamily caregivers.5 In addition, Siminoff and colleagues could demonstrate that spouse caregivers are at higher risk for depression than other family caregivers.10 Our findings also show a trend towards higher depression in spouses compared to other family caregivers, indicating the possible need for psycho-oncological support also during the bereavement phase. Siminoff and colleagues reported significant impact of familiar cohesion, expressiveness, and familiar conflicts on depressive symptoms in caregivers. The analysis of patient-specific factors revealed a significant correlation of depression, but not anxiety, with the patients’ Karnofsky performance status and overall condition. However caregivers’ anxiety and depression showed no correlation with patients’ age, gender, primary tumor, extent of disease, previous disease duration, or number of present symptoms. In contrast, previous studies have suggested an impact of poorly treated symptoms, especially pain, fatigue, or weakness, as well as of rapidly progressive disease, on the burden of family caregivers.5,8,30 Fri+riksdo´ttir and colleagues
OECHSLE ET AL. demonstrated a correlation between anxiety and depression and the time frame from initial diagnosis;2 however, as they revealed five years from diagnosis as the relevant time point, this could not be reproduced in this study with shorter median disease duration. Previous studies have suggested direct correlations between psychological symptoms in caregivers and psychological symptoms in palliative care patients.8–10 Hodges and colleagues even reported equal levels of psychological distress of patients and their carers.9 In our study, caregivers’ anxiety and depression correlated significantly with the evaluation of patients’ anxiety in both perspectives: the caregivers’ estimation of the patients’ anxiety and the patients’ own scoring of their subjective level of anxiety. Further studies should investigate possible reciprocal effects between patients’ and caregivers’ level of anxiety and depression. In our analysis, caregivers’ anxiety showed a significant impact on their overall scores for the patients’ anxiety. Depression significantly influenced their perspective on the patients’ shortness of breath, nausea, irritability, and anxiety. The overall number of discordant scorings demonstrated a significant correlation with caregivers’ anxiety, but was independent from caregivers’ depression. Caregivers’ anxiety or depression showed no influence on their underestimation of patients’ symptoms, but depressive and anxious caregivers tended to overestimate patients’ symptoms. The relationship between patient and caregiver seems to influence the risk for symptom underestimation by spouses. In a similar study, McPherson and colleagues assessed patients’ and caregivers’ perspective on patients’ symptoms using the MSAS. They demonstrated that caregivers’ emotional state, their burden of providing care, and male gender were significantly correlated with levels of disparity on some aspects.14 Regarding anxiety and depression as a part of caregivers’ emotional state, this study seems to strengthen the results of our analysis. In addition, they demonstrated a higher correlation between caregivers and patients for physical than for psychological symptoms, which had already been suggested in an analysis of Lobchuk and colleagues12,14 Robinson and colleagues even described a substantial magnitude of discrepancies between the patients and their caregivers concerning the patients’ psychological functioning and recommended avoiding any substitution of information from family caregivers into assessment of cancer patients’ psychological functioning.15 Our study has several limitations, as it is a cross-sectional study with limited information about the possible interaction effects between patients’ and caregivers’ physical and psychological symptom burden. The overall small sample size represents a methodological restriction and reduces the extent to which our findings can be generalized. Another limitation is lack of inclusion of further caregiver-related psychosocial aspects, such as age, employment, or living arrangements; quality of life; or psychiatric morbidity, which have been seen as possible factors influencing the prevalence of anxiety and depression in relatives of cancer patients.1–5,7,35 In conclusion, about 70% of family caregivers of palliative care patients suffer from clinically relevant signs of anxiety and depression. Anxiety and depression have a significant impact on their perspective on patient symptoms, especially on anxiety, tiredness, nausea, and dyspnea. The palliative care team has to be conscious of these factors possibly influencing
ANXIETY AND DEPRESSION IN FAMILY CAREGIVERS the caregiver’s perspective. Integrative palliative care should offer psycho-oncological care for the caregivers on a routine basis to avoid misleading perspectives possibly influencing end-of-life treatment decisions.
Downloaded by UNIVERSITY OF MANCHESTER from www.liebertpub.com at 03/10/18. For personal use only.
References 1. Costa-Requena G, Cristo´fol R, Can˜ete J: Caregivers’ morbidity in palliative care unit: Predicting by gender, age, burden and self-esteem. Support Care Cancer 2012;20:1465–1470. 2. Friethriksdottir N, Saevarsdottir T, Halfdanardottir SI, Jonsdottir A, Magnusdottir H, Olafsdottir KL, et al.: Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncol 2011;50:252–258. 3. Grov EK, Dahl AA, Moum T, Fossa SD: Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 2005;16:1185–1191. 4. Grov EK, Fossa˚ SD, Sørebø O, Dahl AA: Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden. Soc Sci Med 2006;63: 2429–2439. 5. Palos GR, Mendoza TR, Liao K, Anderson KO, GarciaGonzalez A, Hahn K, et al.: Caregiver symptom burden: The risk of caring for an underserved patient with advanced cancer. Cancer 2011;117:1070–1079. 6. Rosenberger C, Hocker A, Cartus M, Schulz-Kindermann F, Harter M, Mehnert A: Outpatient psycho-oncological care for family members and patients: Access, psychological distress and supportive care needs. Psychother Psychosom Med Psychol 2012;62:185–194. 7. Valeberg BT, Grov EK: Symptoms in the cancer patient: Of importance for their caregivers’ quality of life and mental health? Eur J Oncol Nurs 2013;17:46–51. 8. Harding R, Higginson IJ, Donaldson N: The relationship between patient characteristics and carer psychological status in home palliative cancer care. Support Care Cancer 2003;11:638–643. 9. Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 2005;60:1–12. 10. Siminoff LA, Wilson-Genderson M, Baker S: Depressive symptoms in lung cancer patients and their family caregivers and the influence of family environment. Psycho-oncology 2010;19:1285–1293. 11. Miaskowski C, Zimmer EF, Barrett KM, Dibble SL, Wallhagen M: Differences in patients’ and family caregivers’ perceptions of the pain experience influence patient and caregiver outcomes. Pain 1997;72:217–226. 12. Lobchuk MM, Degner LF: Symptom experiences: Perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. J Clin Oncol 2002; 20:3495–3507. 13. Lobchuk MM, Vorauer JD: Family caregiver perspectivetaking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med 2003;57:2379–2384. 14. McPherson CJ, Wilson KG, Lobchuk MM, Brajtman S: Family caregivers’ assessment of symptoms in patients with advanced cancer: Concordance with patients and factors affecting accuracy. J Pain Symptom Manage 2008;35:70–82. 15. Robinson JA, Crawford GB: Do palliative patients and carers agree about patients’ psychological functioning? Palliat Support Care 2010;8:69–74. 16. Silveira MJ, Given CW, Given B, Rosland AM, Piette JD: Patient-caregiver concordance in symptom assessment and
1101
17.
18.
19.
20.
21.
22.
23.
24.
25.
26.
27.
28.
29.
improvement in outcomes for patients undergoing cancer chemotherapy. Chronic Illn 2010;6:46–56. Sneeuw KC, Aaronson NK, Sprangers MA, Detmar SB, Wever LD, Schornagel JH: Value of caregiver ratings in evaluating the quality of life of patients with cancer. J Clin Oncol 1997;15:1206–1217. Sneeuw KC, Aaronson NK, Sprangers MA, Detmar SB, Wever LD, Schornagel JH: Evaluating the quality of life of cancer patients: Assessments by patients, significant others, physicians and nurses. Br J Cancer 1999;81:87–94. Yesxilbalkan OU, Okgu¨n A: Patients’ self reports and caregivers’ perception of symptoms in Turkish cancer patients. Eur J Oncol Nurs 2010;14:119–124. Milne DJ, Mulder LL, Beelen HCM, Schofield P, Kempen GIJM, Aranda S: Patients’ self-report and family caregivers’ perception of quality of life in patients with advanced cancer: How do they compare? Eur J Cancer Care 2006;15:125–132. Wennman-Larsen A, Tishelman C, Wengstro¨m Y, Gustavsson P: Factors influencing agreement in symptom ratings by lung cancer patients and their significant others. J Pain Symptom Manage 2007;33:146–155. Portenoy RK, Thaler HT, Kornblith AB, Lepore JM, Friedlander-Klar H, Kiyasu E, et al.: The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 1994;30:1326–1336. Chang VT, Hwang SS, Feuerman M, Kasimis BS, Thaler HT: The Memorial Symptom Assessment Scale Short Form (MSAS-SF). Cancer 2000;89:1162–1171. Oechsle K, Goerth K, Bokemeyer C, Mehnert A: Symptom burden in palliative care patients: Perspective of patients, their caregivers and attending physicians. Support Care Cancer 2013;21:1955–1962. Webber K, Davies AN: Validity of the Memorial Symptom Assessment Scale-Short Form Psychological Subscales in Advanced Cancer Patients. J Pain Symptom Manage 2011;42:761–767. Spitzer RL, Kroenke K, Williams JBW, Lo¨we B: A brief measure for assessing generalized anxiety disorder: The GAD-7. Arch Intern Med 2006;166:1092–1097. Lo¨we B, Decker O, Mu¨ller S, Bra¨hler E, Schellberg D, Herzog W, et al.: Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care 2008;46:266–274. Lo¨we B, Kroenke K, Herzog W, Gra¨fe K: Measuring depression outcome with a brief self-report instrument: Sensitivity to change of the Patient Health Questionnaire (PHQ-9). J Affect Disord 2004;81:61–66. Lo¨we B, Spitzer RL, Gra¨fe K, Kroenke K, Quenter A, Zipfel S, et al.: Comparative validity of three screening questionnaires for DSM-IV depressive disorders and physicians’ diagnoses. J Affect Disord 2004;78:131–140.
Address correspondence to: Karin Oechsle, MD Department of Oncology, Hematology, and BMT with section of Pneumology Hubertus Wald University Comprehensive Cancer Center Hamburg University Medical Center Eppendorf Martinistrasse 52 20246 Hamburg Germany E-mail: [email protected]
