Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase

E. K. Grov1,2, A. A. Dahl2,*, T. Moum3 and S. D. Fosså2

1 Buskerud University College, Institute of Health, Drammen; 2 Department of Clinical Cancer Research, The Norwegian Radium Hospital, University of Oslo, Oslo; 3 Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway

* Correspondence to: Professor A. A. Dahl, Department of Clinical Cancer Research, The Norwegian Radium Hospital, 0310 Oslo, Norway. Tel: +47-22-93-40-00; Fax +47-22-93-45-53; Email: alvd{at}ulrik.uio.no


    Abstract
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
Background:: Limited research has been done on mental health and health-related quality of life (QOL) of primary caregivers (PCs) to patients staying at home with advanced cancer. This study examines anxiety, depression, and QOL in PCs of patients with cancer in the late palliative phase.

Patients and methods:: The sample consisted of 49 PCs of women with breast cancer and 47 PCs of men with prostate cancer. QOL was rated with the Medical Outcome Study Short Form (SF-36), and mental health with the Hospital Anxiety and Depression Scale (HADS). The findings were compared with age-adjusted norm data (norm).

Results:: Physical QOL was significantly higher than norm in both genders, while mental QOL was significantly lower in male PCs. The level of anxiety was significantly higher than norm in both genders. No significant difference for level of depression was found in either gender, while caseness of HADS-defined depression was significantly more prevalent in female PCs compared with norm.

Conclusion:: PCs of both genders had significantly more anxiety than norm samples. Health care personnel in contact with PCs should consider screening them for mental symptoms and QOL and, if necessary, recommend further evaluation by their doctors.

Key words: anxiety, cancer, caregivers, depression, norm data, quality of life


    Introduction
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
There is a trend towards early discharge of hospitalized cancer patients to their private homes, thus leaving more of the care to the persons closest to the patient [1Go–3Go]. This trend is in line with the fact that many patients with advanced cancer, and their families, prefer home care instead of admission to nursing homes or long-term hospitalization [4Go–7Go]. At home the primary caregiver (PC) is the main provider of physical and emotional support for the patient. PCs are mostly the patient's spouse, partner or closest relatives, but significant others can also take on that role and function.

Cancer with metastases has shifted from being fatal in the short-term in most patients towards often being a chronic disease requiring long-term palliative treatment [8Go]. The present study defines the late palliative phase as a condition beyond the curative phase, but is not considered to be terminal. Most studies of the PCs of cancer patients have examined organizational aspects of the palliative phase, compared symptoms reported by the patient and PCs, and dealt with the PCs' burden and distress [9Go–14Go]. Research on PCs caring for cancer patients at home has mainly focused on earlier stages of cancer, or has not considered any specific phase of its course [15Go–20Go]. Results are also difficult to compare because of different designs, methods and instruments [21Go–23Go].

In the palliative phase, PCs have to provide demanding care to severely ill patients for a period ranging from months to years. The increased responsibility and challenge of care provision may lead to negative as well as positive effects on PCs' mental health and health-related quality of life (QOL) [21Go, 24Go, 25Go]. The caregiver situation influences the PCs due to stressful conditions, e.g. care tasks over time, medical management, decision making and dealing with emotional aspects, which may lead to subjective and objective burden or cost [26Go, 27Go]. However, it is not easy to determine to what extent burden is a result of stressors experienced by the PC, or is due to antecedent factors affecting the stress of the caregiver situation [28Go, 29Go].

Although caregiving may lead to physical and psychological symptoms in PCs [30Go], Nijboer et al. [19Go] have shown that PCs caring for newly diagnosed cancer patients, may sustain their QOL by gaining high self-esteem from the caregiving process. Weitzner et al. [31Go] compared QOL measured by the Short Form 36 (SF-36) in PCs giving care to patients in the palliative versus the curative phase. The PCs of palliative patients generally reported lower QOL than those responsible for patients in the curative phase. That study suggested that PCs' QOL was dependent on factors related to the patient's condition, as well as individual characteristics of the PCs. These findings were supported by Biegel et al. [32Go].

Grunfeld et al. [33Go] compared PCs at the start of the palliative phase with the start of the terminal phase using SF-36 and the Hospital Anxiety and Depression Scale (HADS). PCs reported to be increasingly depressed and anxious from the start of the palliative phase to the start of the terminal phase. Payne et al. [1Go] showed that 33 of 39 PCs of patients in palliative care scored above the threshold for psychological distress on the General Health Questionnaire. Mor et al. [18Go] reported that PCs' levels of emotional distress were relatively constant across age groups. Furthermore, considering newly diagnosed cancer patients and patients with recurrent disease, one-third of PCs scored above the cut-off for caseness on self-rating of depression.

None of these studies of PCs compared gender or used comparative norm data. When studying mental health and QOL in PCs according to gender, we have to consider that females, by traditional role attribution, are more tuned to the caring function at home [34Go], although the responsibility for caring functions has lately also been assumed by males [24Go]. We also have to take into account that the prevalence of anxiety disorder and depression is higher in females [35Go].

The aim of this study was to examine anxiety, depression and QOL in PCs of patients with metastatic cancer in the late palliative phase cared for at home compared with gender and age-adjusted norm data (norm). We posed three hypotheses.

  1. PCs of both genders show higher levels of anxiety and depression and lower levels of QOL than norm.
  2. In both males and females PCs depression, anxiety and QOL are associated with the patients' performance status and their need for care in daily life activities.
  3. We presume that the generally observed gender effects of the caregiver role and the higher prevalence of anxiety disorder and depression in females [35Go], will balance each other out, thus resulting in no gender differences of anxiety and depression among PCs.


    Patients and methods
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
Sample
Between February 2002 and October 2003 patients with cancer in the late palliative phase hospitalized at The Norwegian Radium Hospital (NRH) were consecutively invited to participate in this prospective, questionnaire-based study. Nurses gave an information letter and a consent form to eligible patients. Patients who consented to participate were thereafter more thoroughly informed by the first author, who also provided an information letter and a consent form for the patients to give to their identified PC. Consenting patients were asked to complete the ‘Patient questionnaire’ after returning home, and the identified PCs were invited to fill in the ‘PC questionnaire’. Both questionnaires were to be returned by mail to the first author. In case of no response, no reminder was sent to patients or their PCs.

The eligibility criteria for patients were: age between 18 and 75 years, understanding that they had metastatic cancer, estimated survival time more than 4 months, performance status (ECOG) ≥1, to be managed at home with support from PCs and/or health care personnel, ability to speak Norwegian, and provision of written consent. The exclusion criterion was known mental disorder.

PCs included in the study had to be identified by the patients themselves. They had to be aged ≥18 years, understand the Norwegian language, and provide written consent.

Norm samples
The Nord-Trøndelag Health Study (The HUNT Study, www.hunt.ntnu.no; Holmen et al. [36Go]) took place between 1995 and 1997. The norm sample of the present study consisted of individuals aged 20–89 years (N=62 566) with valid ratings of depression and anxiety on HADS.

In 1998, Statistics Norway [37Go] performed a survey that was representative of Norwegians aged 15 years and above, assessing working and living conditions, self-reported health and the use of health services. Participants were invited to complete a mailed questionnaire containing the SF-36. Valid SF-36 responses were returned by 6638 of 9735 participants (66.4%).

Measurements
Demographic data collected by this questionnaire were used to describe relevant variables for PCs anxiety, depression and QOL.

A search of the literature did not reveal any specific instrument that assessed the amount and type of caregiving. Therefore, a structured questionnaire with relevant items was developed by the first author based on data from qualitative studies [6Go, 38Go, 39Go]. In a pilot study, 10 PCs filled in the questionnaire and gave valuable feedback, which was used to revise the form. The PC questionnaire covered: age, gender, weight, civil status, education, income level, employment status, relationship to patient, residence, responsibility for other persons, collaboration with other helpers, responsibility for coordination of help, and characteristics of the caregiving situation during the previous 2 years. The PCs compared their current caregiver burden with the experience during the previous 2 years, rating it as lighter, the same or heavier.

The following information was retrieved from each patient's medical record: cancer type, date of cancer diagnosis, extension of the disease, sites of metastasis, date of first progression, onset of palliative phase, estimated lifetime from completion of the questionnaire, type and time-schedule for curative and palliative treatment, performance status (ECOG) at the time of inclusion, and presence of somatic co-morbidity.

Levels of anxiety and depression were self-rated by HADS, which has been found to perform well as a test for such symptoms in the general population, in cancer patients and in primary care patients [40Go]. HADS consists of 14 items, seven on the depression subscale (HADS-D) and seven on the anxiety sub-scale (HADS-A). Each item is scored on a four-point scale from 0 (not present) to 3 (considerable), and the item scores are added, giving HADS-D and HADS-A scores from zero (minimum symptom load) to 21 (maximum symptom load).

Based on the literature, cases of HADS-defined anxiety disorders or depression were defined by a score of ≥8 on HADS-A or HADS-D, respectively. This cut-off level has been shown to give an optimal balance between sensitivity and specificity on Receiver Operating Characteristic curves [40Go]. Caseness defined by HADS basically defines patients in need of clinical concern, and does not correspond exactly to such mental disorders defined by ICD-10 or DSM-IV. The psychometric properties of the Norwegian version of HADS were tested in HUNT study and found to be excellent [41Go].

QOL was assessed by SF-36 [42Go]. SF-36 assesses eight dimensions of physical and mental health, which are summarized as the Physical and Mental Component Summary Scales (PCS and MCS, respectively). These summary scales were based on SF-36 item scores that were T-transformed, so that in a US norm population the mean of the summary scale scores was 50, and one standard deviation (SD) was 10 points.

The present report considers only that information from the three sources (patient questionnaire, PC's questionnaire and medical information), which was relevant for analysis of the PCs' QOL and mental health.

Statistics
The data were analyzed by SPSS-PC, version 11.0. Both the sample of PCs and the norm samples were divided into 5 year age groups, and the norm samples were adjusted to the age group distribution of the PCs. Continuous variables were examined with t-tests, and categorical variables with {chi}2-tests, or Fisher's exact test. Comparison with means from published studies was done with one-sample t-tests. The PCs and patients were stratified in order to analyse the influence of relevant moderators.

Analyses involving continuous dependent variables were performed with multiple linear regressions. Categorical independent variables were included as sets of dummies, with statistical significance being reported for the set as a whole. Statistical interactions between pairs of independent variables (regardless of level of measurement) were tested one pair at a time, with main effects included in the equation.

Significance level was set at P <0.05, and two-sided tests were applied.

Ethics
The Regional Medical Research Ethics Committee, Health Region II (South) of Norway approved the study.


    Results
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
Participation rate
Of 296 eligible patients invited to participate, 175 (59%) found it too burdensome to participate; they either consented but did not return the questionnaire (46), or were not interested (129). Gender, mean age and types of cancer did not differ significantly between the 175 non-participating and the 121 participating patients. Since the patients recruited the PCs, we have no information about the non-participating PCs. Based on medical records, four of the 121 consenting patients (3%) were subsequently excluded since they were not in the late palliative phase.

Information from the hospital's patient register showed that the median interval between invitation to take part and death for the 117 finally participating patients was 231 (range 0–640) days compared with 128 (range 2–574) days for the non-participating (P=0.001). Mean time from the start of palliative phase to the data-collection was 654 days (SD = 768) for participating patients. Of the remaining 117 patients, PCs of 14 (12%) declined to take part. Among the 103 consenting PCs, 96 (93%) delivered complete questionnaires.

Demographics
Demographics of the patients and PCs are given in Tables 1 and 2. The mean age of the female patients was significantly lower than that of the males (Table 1).


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Table 1.

 

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Table 2.

 
In patients, significant gender differences were observed for brain metastases, curative treatment and palliative treatment. No gender differences were observed for patients receiving help from health care personnel, but the level of help from PCs differed between male and female patients. Male patients had significantly more need of help from non-health care personnel (P=0.018) (Table 1).

Significant differences were observed between the male and female PCs concerning relationship to patient, residence, being responsible for other persons than the patient, education and income level (Table 2). Male PCs were significantly more likely to be the patient's partner, live in the same residence as the patient, and report more responsibility for children. More male PCs also had a higher level of education and income.

Anxiety and depression
The mean level of anxiety in PCs of both genders was significantly higher than in age- and gender-adjusted norms, but their level of depression did not differ significantly from norms in either gender (Table 3a).


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Table 3(a).

 
Both male and female PCs showed significantly higher prevalence rates of HADS-defined anxiety disorder than norm (Table 3a). The prevalence of HADS-defined depression among male PCs did not differ significantly from norm, while the figure was significantly higher in female PCs.

QOL
In both genders the mean scores of the PCs on Mental Health (MH), Vitality (VT) and Social Functioning (SF), were significantly lower than norm (Figure 1 and 2). Male PCs showed significantly lower mean scores than norm on the Role Emotional (RE) dimension. Male PCs also scored significantly lower on MCS than norm (P=0.008) (Table 3b).



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Figure 1. SF-36 dimensions in male primary caregivers.

 


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Figure 2. SF-36 dimensions in female primary caregivers.

 

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Table 3(b).

 
Among the physical SF-36 dimensions, the mean score for Physical Functioning (PF) was significantly higher among female PCs compared with norm. No significant differences between PCs and norm were observed for the other three physical dimensions. Significantly higher levels of PCS compared with norm were shown in both genders (P=0.004 for female PCs, and P=0.003 for male PCs) (Table 3b).

Moderators
When the dependent variable HADS-A was adjusted for the PCs' demographical and care variables, the only significant influence was found on female PCs' anxiety by ‘relationship with the patient’ (P=0.013), and ‘residence same as the patient’ (P=0.049).


    Discussion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
Our main finding was an increased level of anxiety symptoms and prevalence of HADS-defined anxiety disorders in PCs of both genders compared with the norms. In contrast, the level of depression among PCs in both genders did not differ significantly from the norms, although women had significantly higher prevalence of HADS-defined depression compared with norm. Finally, MCS in male PCs was significantly lower than norm.

Theoretically, a high level of anxiety in PCs could be related to concerns about the future, coping with the situation, fear of loss and being alone, sole responsibility for children, or unfamiliar tasks at home [6Go, 21Go]. These situational factors may be seen as stressors influencing the caring situation, as indicated by Coristine et al. [27Go] and Haley [26Go]. Anxiety is considered, by us, as an indicator of the current caregiver burden, explained by its negative impact to the PC. However, anxiety could also be viewed as stress-factor influencing the PCs' reactions to the challenges of caregiving. As Montgomery et al. [28Go] and Scherbring [29Go] suggest, the direction of the causal chain has not yet been identified.

However, in the present study, we imply that relational and psychological burden is more important than the physical one in the caring situation. The high level of anxiety may reflect the fact that most PCs are closely attached to the patients with a natural fear of loss and the future. This may also be a result of selection bias in the way that the PCs with best relation to the patient have been over-sampled.

Payne et al. [1Go] reported that female PCs experienced more psychological morbidity and strain in the palliative phase. This observation was not confirmed in our study. Explanations for this may be biased samples, or low number of female respondents in our study. Types of cancer and cultural differences may be an alternative explanation of the differences.

Grunfeld et al. [33Go] reported that PCs of both genders showed increasing levels of anxiety and depression from the start of the palliative phase to the start of the terminal phase; however, in their study only 15 of 84 PCs (18%) responded at the start of the terminal phase. Our total sample of PCs of patients in the ‘late palliative phase’ reported corresponding levels of anxiety and depression to those of Grunfeld et al. assessed at the start of their ‘palliative phase’. However, Grunfeld et al. did not anchor their phases to any specific milestones of the disease course, or quantify the time of assessment in relation to the patient's death. Our ‘late palliative phase’ was reflected by survival only 231 days (median) from inclusion into the study, probably explaining the lower mean score on MCS among PCs in our study compared with Grunfeld et al.'s observations. A selection bias in our sample towards the best functioning among PCs may also explain the corresponding levels of anxiety and depression as reported in Grunfeld et al.'s start of palliative period.

This is also in contrast to Weitzner et al.'s [31Go] observation of reduced QOL in PCs associated with lower patients' performance status reported by PCs. In comparison to Weitzner et al.'s report, the PCs in our study showed higher PCS and lower MCS. Neither did we find any significant relationship between the patients' performance status and MCS, PCS, HADS-A or HADS-D. Some of these discrepancies may be explained by methodological differences. In our study, the performance status (ECOG) was reported by the oncologist during hospitalization, while in Weitzner et al.'s study ECOG was rated by the patient's PC at home.

We found a significantly lower mean level of RE in male PCs. This may indicate that the caregiver role and related emotional aspects is particularly distressing for male PCs due to their traditional role. Brain metastases were significantly more frequent in female patients, and these could lead to behavioural and cognitive impairment that could represent an extra burden for the male PCs. However, the level of anxiety in our late palliative phase is significantly higher than norms in both genders, and should be of concern for health care personnel.

Strengths
Compared with several of the other studies of PCs, our patient and PC samples are more systematically described, and separated by gender. Our sample seems to be clinically representative since the participating patients did not differ significantly from the non-participating, except for the extent of the disease.

The use of standardized, psychometrically established instruments is of importance for the validity and reliability of the results. We could also compare the findings in PCs to age- and gender-adjusted norm data.

Another strength of our study was the equal proportion of male and female PCs, since the studies of Weitzner et al. [31Go], and Grunfeld et al. were either skewed or did not analyze for gender.

Limitations
The moderate response rate, where 59% of the patients refused to participate in this study, reflects the challenge of conducting research in this group of PCs. Other researchers have experienced the same problem with low attendance rates of cancer patients and their PCs in the late palliative phase [43Go, 44Go].

Some of our non-significant results could be a result of type II statistical error due to the low sample sizes of patients and PCs. Our study included PCs who provided palliative care, but not to the sickest ones in the terminal phase. There is also a risk of selection bias towards pairs of PCs and patients with close attachment and high commitment. The cross-sectional design precludes the interpretation of any causal relationship, but enables some hypotheses in particular about gender differences.

Clinical implications
Our results indicate that health care personnel should pay attention to the PCs mental health and QOL. The caseness and increased levels of anxiety in both genders and depression in female PCs, could reflect the PCs' stressful caring situation, and should primarily be seen as an appropriate reaction. However, if strong subjective complaints or functional impairment are observed, evaluation or therapeutic interventions should be suggested. Assessment of mental health could preferably include use of a brief self-rating instrument like HADS, and information should be given regarding services available for emotional support and practical assistance.


    Conclusion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
We confirmed the impaired mental health and QOL in many PCs compared to age- and gender-adjusted norm samples. Further research should study larger samples, and try to improve the participation rate of patients in order to avoid biases. Health care personnel should be observant of the emotional problems of PCs caring for patients with advanced cancer.


    Acknowledgements
 
This research project was funded by grants from Buskerud University College, Norway, research grant no 24013.

Received for publication November 9, 2004. Revision received February 3, 2005. Accepted for publication February 4, 2005.


    References
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Conclusion
 References
 
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