Abstract
Background
The aim of the study was to analyze the impact of gliomas in caregivers' quality of life (QoL) and to compare this specific population to other oncology caregivers and the normative population in order to find differences and understand which aspects of QoL are more impacted.
Methods
The sample was composed of caregivers of patients with gliomas from the Neuro-Oncology Department of Timone University Hospital of Marseilles, France. Control caregivers were selected from different oncology departments and were matched with caregivers of patients with brain cancer on age, sex, and relationship with the patients. We used the specific CareGiver Oncology Quality of Life questionnaire (CarGOQoL) to assess the impact of cancer and its treatment on caregivers' QoL. Caregivers also completed the Short Form 36 (SF36) for comparison with the French normative sample.
Results
The study sample included 50 caregivers of patients with gliomas, aged 30–77 years, 28% of whom were men. When comparing specific CarGOQoL scores with those of the control caregivers, brain cancer caregivers had significantly lower scores for the burden and leisure time dimensions, with an effect size of 0.4. No significant differences between cases and controls were observed with SF36.
Conclusion
Caregivers of patients with gliomas showed increased burden scores and lower scores for the leisure time dimension. This could be explained by their unique care situation, in which patients become more limited physically and cognitively.
Keywords: brain cancer, burden, caregivers, gliomas, quality of life
Gliomas are indicative of a rare, severe, and often devastating disease1 that represents ∼ 2% of all cancers in the adult French patient population.2 The prognosis depends on clinical, pathological, and molecular factors. The prognosis of patients with high-grade gliomas is generally poor; for example, the median survival for patients with a glioblastoma is 1–2 years.3 The median overall survival for patients with low-grade gliomas varies considerably from less than 2 years to more than 20 years.4,5 Common symptoms of gliomas include headaches, edema, seizures, and motor weakness, as well as progressive neurological deficits. Surgery, radiation, chemotherapy, and targeted therapies lead to common complications and to treatment side effects such as fatigue, anorexia, venous thromboembolic events, gastrointestinal perforation, and myelosuppresion.3 Studies have demonstrated that gliomas seriously compromise a patient's quality of life (QoL).6–8
However, gliomas also disrupt the QoL of a patient's caregiver. As with other oncology caregivers,9–11 caregivers of patients with gliomas often report disruption in their emotional, physical, and social well-being.12–15 Across the trajectory of the illness, patients becomes increasingly limited, both physically and cognitively,6,14 causing changes in cognitive abilities, personality, and behavior3 that negatively affect caregivers' QoL and may influence their ability to provide adequate care. Therefore, deterioration in caregivers' QoL in turn could affect patients' QoL. Indeed, patients' QoL depends in part upon the availability of support and the capacity of the caregiver.16,17
Caregivers of patients with brain tumors are considered a unique subset of the cancer caregiver population,18 and issues related to QoL are very important to them19 because of the challenges they have to confront in caring for a loved one who is suffering from a disease with a potentially short terminal trajectory and severe functional,20 cognitive, and neuropsychological sequelae21 that produce major changes in their lifestyle.16 The QoL of glioma caregivers is expected to be more disrupted than that of any other oncology caregivers. However, an appropriate clinical comparison between caregivers of patients with gliomas and other oncology caregivers is necessary.13 Better understanding of the experience of caregivers of patients with gliomas and the domains of their QoL that are the most impacted will provide health care professionals with the information needed to develop specific and adapted interventions to support and prepare caregivers to care for their loved ones.
The aim of the study was to analyze the QoL of caregivers of patients with gliomas. In the first step, we compared subgroups of caregivers supporting patients with different histologies and different stages of disease. Then, we compared this specific population with other oncology caregivers and with the normative population to find the differences and to understand which aspects of QoL are more impacted. The caregivers of patients with glioblastoma were also analyzed and compared with their own controls.
Material and Methods
Population
Caregivers participated in this study on a voluntary basis. The study's objectives were explained to the participants, and informed consent was obtained from all. Investigators ensured that the study complied with the Good Clinical Practice Procedures in accordance with the Declaration of Helsinki. The sample comprised caregivers of patients with gliomas who were treated between January and May 2007 in the Neuro-Oncology Department of Timone University Hospital in Marseilles, France. Patients were recruited consecutively; when the patient agreed to participate in the study, 80.7% of caregivers also agreed to participate. Inclusion criteria for cancer patients included inpatient or outpatient status and a diagnosis of primary WHO grade II, III, or IV glioma.
Inclusion criteria for caregivers were age 18 years or older; designation as the main natural caregiver by the patient; ability to speak/read French, and lack of cancer comorbidity. In order to account for confounding variables, each caregiver was matched with 4 control caregivers. Caregivers of patients with gliomas were matched with caregivers of cancer patients selected from different oncology departments by age (+/− 3 years), sex, and relationship to the patients (spouse, son/daughter, parent, or sibling). Each control was matched with 4 cases (there is usually little marginal increase in precision from increasing the ratio of controls to cases beyond 4). This sample technique allowed us to improve the power and precision of our statistical analysis.22 Insurance access was similar in the study and control groups.
Study Design
Research assistants invited the caregivers to participate and explained the purpose of the study. Caregivers were enrolled consecutively during one year, and informed consent was obtained. Patients and their caregivers visited the cancer center. During their visit, patient characteristics (sex, age, date of diagnosis) were collected. At the same visit and after the appointment, the caregiver provided sociodemographic information (sex, age, occupational status, duration of caregiving). We used the specific CareGiver Oncology Quality of Life questionnaire (CarGOQoL), a self-administered instrument comprising 29 items based on the exclusive point of view of the caregivers for assessing the impact of cancer and its treatment on their QoL.10 The CarGOQoL describes 10 dimensions: psychological well-being; burden; relationship with health care; administration and finances; Coping (COP); physical well-being; self-esteem; leisure time; social support, and private life. All dimension scores and the index of the CarGOQoL ranged from 0 to 100: the higher the score, the better the QoL. Caregivers also filled out the Short Form 36 (SF36), a questionnaire consisting of 36 items describing 8 dimensions: physical functioning, social functioning, role-physical problems, role-emotional problems, mental health, vitality, bodily pain, and general health. All dimension scores of the SF36 ranged from zero to 100: the higher the score, the better the QoL.23
Statistical Analysis
Descriptive analysis was undertaken using means, standard deviations (X ± SD), and medians for quantitative parameters and percentages for qualitative parameters. Comparisons of the mean QoL scores between different subgroups (caregivers of patients in their first-line treatment/second and subsequent lines, caregivers of patients with a diagnosis of grades II or III/IV gliomas, and caregivers of patients having a KPS less than 80 versus those with KPS of 80 or higher) were analyzed using Mann-Whitney tests. Associations between QoL scores and continuous variables (eg, caregiving duration) were analyzed using Pearson's correlation tests.
Differences in QoL scores (CarGOQoL and SF36) between 47 caregivers of patients with brain tumors and 188 caregivers of patients with other cancers were compared using the Student t test or Wilcoxon test. QoL scores of 30 caregivers of patients with glioblastoma were analyzed and compared with their own 120 controls. Caregivers' mean scores for all scales of SF-36 were compared with those of their age- and sex-matched controls from the French normative sample23 using paired Student t tests. The effect size (ES) of the mean difference was calculated by dividing the difference in the group means by a reference standard deviation (ES = (X1 – X2)/SD). Effect sizes were used for interpreting QoL score differences. We used guidelines provided by Cohen for interpreting effect sizes in which 0.2 is small, 0.5 is medium, and 0.8 is large.24 Data analyses were performed using PASW 17.0.2 computer software.
Results
Sample Characteristics, Clinical Factors, and Quality of Life
The study sample included 50 caregivers of patients with gliomas. Their ages ranged from 30–77 years, and 28% were men. Of the 50 caregivers of patients with gliomas who participated, only 47 were retained at the matching process because no control with similar characteristics was available for 3 caregivers. The control sample included 188 caregivers of patients with different cancers (breast, lung, prostate/urological, hematological, digestive, head and neck, genital, sarcoma, and others). Caregiver and patient characteristics are summarized in Tables 1 and 2. The caregivers' CarGOQoL index mean score was of 59.38 ± 12.68, and the highest scores were found for the administration and finances (71.70 ± 25.73) and self-esteem (75.00 ± 18.40) dimensions. Caregivers reported their lowest scores for the leisure time (39.00 ± 22.25) and psychological well-being (45.75 ± 23.57) dimensions. When comparing caregivers of patients in their first-line treatment with caregivers of patients in their second or subsequent treatment lines, no statistical differences were found for QoL scores. Caregivers of patients with a diagnosis of grade II or III gliomas reported higher scores than caregivers of patients treated for grade IV gliomas for the burden dimension (78.44 ± 21.36 and 60.76 ± 30.53, respectively; P < .05). Caregivers for patients with a diagnosis of grade II or III grade glioma reported lower scores for the self-esteem dimension than those for patients treated for grade IV grade glioma (68.13 ± 20.87 and 79.74 ± 15.09, respectively; P < .05). Higher scores were significantly associated with a longer-term caregiver situation for the psychological well-being (r = 0.330; P < .05), physical well-being (r = 0.388; P < .05), and leisure time (r = 0.340; P < .05) dimensions, while a significant negative association was observed for the self-esteem dimension (r = −0.311, P < .05). Globally, caregivers of patients having a KPS less than 80% reported lower scores in all dimensions than caregivers of patients with a KPS score of 80% or higher, but differences were statistically significant only for the burden dimension (61.26 ± 29.29 and 79.51 ± 23.01, respectively; P < .05).
Table 1.
Caregivers' characteristics
| Caregivers | Cases (N = 50) | Controls (N = 188) |
|---|---|---|
| n (%) or Mean ± SD | n (%) or Mean ± SD | |
| Gender | ||
| Women | 36 (72) | 132 (70.2) |
| Men | 14 (28) | 56 (29.8) |
| Age (years): mean ± SD | 51.6 ± 13.2 | 52.93 ± 12.39 |
| Living | ||
| With a partner | 39 (78) | 137 (72.9) |
| Alone | 11 (22) | 51 (27.1) |
| Living with the patient* | ||
| Yes | 36 (72) | 130 (69.1) |
| No | 13 (26) | 57 (30.3) |
| Relationship with the patient | ||
| Partner | 28 (56.0) | 100 (53.2) |
| Son/daughter | 9 (18) | 36 (19.1) |
| Parent | 6 (12) | 24 (12.8) |
| Othera | 7 (14.0) | 28 (14.9) |
| Time of caregiving, months: median (25–75th perc) | 12 (6–39.5) | 22.5 (6–60) |
| Hours per day spent in caregiving** | ||
| Full day | 23 (46) | 72 (38.3) |
| 8–18 h | 13 (26) | 25 (13.3) |
| Less than 6 h | 13 (26) | 64 (34.0) |
| Accompanying the patient to: | ||
| All medical visits | 40 (80) | 112 (59.6) |
| Some medical visits | 10 (20) | 54 (28.7) |
| None | 0 (0) | 22 (11.7) |
| Caregiver being*** | ||
| Principal or alone | 43 (86) | 135 (71.8) |
| With help of others | 6 (12) | 49 (26.1) |
Abbreviation: perc, Percentile.
aBrother, sister, uncle, niece or cousin.
*Number of missing values for cases = 1; for controls = 1.
**Number of missing values for cases = 1; for controls = 27.
***Number of missing values for cases = 1; for controls = 4.
Table 2.
Patients characteristics
| Cases (N = 50) | Controls (N = 188) | |
|---|---|---|
| Patients | n (%) | n (%) |
| Gender | ||
| Women | 27 (54) | 100 (53.2) |
| Men | 23 (46) | 88 (46.8) |
| Age (years): mean ± SD | 55.5 ± 17.0 | 54.86 ± 17.55 |
| KPSa at evaluation | ||
| ≤80% | 32 (64) | |
| >80% | 18 (36) | |
| Tumor grade (most recent surgery) | ||
| Oligodendroglioma (grade II) | 4 (8) | |
| Mixed (grade II) | 2 (4) | |
| Oligodedroglioma (grade III) | 6 (12) | |
| Mixed (grade III) | 8 (16) | |
| Glioblastoma (grade IV) | 30 (60) | |
| Tumor location | ||
| Parietal | 6 (12) | |
| Temporal | 18 (36) | |
| Frontal | 19 (38) | |
| Other | 7 (14) | |
| Time since diagnosis, months: median (25–75th perc) | 12 (6–39.5) | 15 (4–53) |
| Grade II | 10.5 (4.75–144) | |
| Grade III | 20.5 (8–54) | |
| Grade IV | 10.0 (6–27) | |
| Type of therapy | ||
| First-line treatment | 31 (62) | |
| Second or subsequent lines | 19 (38) | |
| Type of cancer | ||
| Breast | 53 (28.2) | |
| Lung | 48 (25.5) | |
| Hematological | 20 (10.6) | |
| Prostate/urological | 18 (9.5) | |
| Digestive | 15 (8.0) | |
| Head and neck | 14 (7.4) | |
| Genital | 4 (2.1) | |
| Othersa | 16 (8.5) | |
Abbreviation: perc, Percentile.
aSarcoma and rare cancers.
Comparison With Control Caregivers
Table 3 shows CarGOQoL and SF36 scores and effect sizes for caregivers of patients with brain tumors and caregivers of patients with other cancers. When comparing specific CarGOQoL scores, statistically significant differences were found for the burden and leisure time dimensions between cases and controls. Caregivers of patients with gliomas had significantly lower scores for the burden and leisure time dimensions, having effect sizes of −0.41 and −0.42, respectively. Caregivers of patients with gliomas had also lower scores for the physical well-being and administration and finances dimensions, with effect sizes of −0.24 and −0.21, respectively, but without statistical significance. No significant differences between cases and controls were observed using the SF36. When comparing only caregivers of patients with glioblastoma with their controls, the results were confirmed (data not shown), effect sizes were increased, and significant differences were found for the burden (ES = −0.51; P < .01) and leisure time (ES = −0.69; P < .01) dimensions.
Table 3.
CareGiver Oncology Quality of Life and Short Form 36 scores in 47 cases compared with 188 controls
| Dimension (number of items) | 47 cases Mean ± SD | 188 controls Mean ± SD | ES | P |
|---|---|---|---|---|
| CarGOQoL | ||||
| Psychological well-being (4) | 46.68 ± 23.99 | 50.13 ± 26.15 | −0.15 | .418 |
| Burden (4) | 67.78 ± 28.66 | 80.27 ± 22.58 | −0.41 | .002** |
| Relationship with health care (3) | 65.82 ± 22.43 | 61.76 ± 23.73 | 0.20 | .281 |
| Administration and finances (3) | 71.53 ± 26.52 | 76.96 ± 22.21 | −0.21 | .181 |
| Coping (3) | 55.32 ± 26.38 | 55.61 ± 27.40 | −0.02 | .948 |
| Physical well-being (4) | 54.79 ± 24.44 | 60.74 ± 24.01 | −0.24 | .128 |
| Self esteem (2) | 74.57 ± 18.91 | 72.80 ± 20.45 | 0.10 | .597 |
| Leisure time (2) | 38.83 ± 22.76 | 48.22 ± 25.30 | −0.42 | .025* |
| Social support (2) | 67.83 ± 23.61 | 64.38 ± 25.91 | 0.15 | .422 |
| Private life (2) | 53.90 ± 25.42 | 58.01 ± 26.19 | −0.15 | .351 |
| Index | 59.43 ± 13.09 | 62.03 ± 13.98 | −0.15 | .292 |
| SF36 | ||||
| Physical functioning | 79.28 ± 21.13 | 83.31 ± 21.74 | −0.18 | .254 |
| Social functioning | 60.78 ± 25.72 | 66.82 ± 24.92 | −0.24 | .179 |
| Role limitations due to physical health | 34.10 ± 39.35 | 45.92 ± 41.42 | −0.32 | .115 |
| Role limitations due to emotional problems | 29.00 ± 33.58 | 35.85 ± 35.34 | −0.19 | .260 |
| Mental health | 45.08 ± 19.22 | 49.89 ± 20.83 | −0.24 | .171 |
| Vitality | 41.78 ± 22.05 | 45.77 ± 20.73 | −0.23 | .266 |
| Bodily pain | 58.80 ± 23.75 | 60.52 ± 23.45 | −0.17 | .669 |
| General health | 61.34 ± 22.15 | 62.07 ± 21.77 | −0.09 | .842 |
| PCS SF36 | 46.85 ± 9.02 | 49.13 ± 9.77 | −0.27 | .180 |
| MCS SF36 | 33.40 ± 11.35 | 35.53 ± 11.46 | −0.13 | .312 |
All dimensions scores of the CarGOQoL and the SF36 range from 0 to 100: the higher the score, the better the quality of life.
***P < 0.001.
**P < 0.01.
*P < 0.05.
Comparison With Normative Data
Compared with French age- and sex-matched normal controls, caregivers of patients with gliomas had significantly lower mean scores for social functioning, role-physical problems, role-emotional problems, mental health, vitality, and bodily pain. Scores for all scales of SF36 and the range of effect sizes are reported in Table 4.
Table 4.
Short Form 36 mean differences and comparison with normative data adjusted for age and sex
| SF 36 | Our Sample | French Normative Values | Adjusted Mean Difference | ES | Pa |
|---|---|---|---|---|---|
| N = 50, Mean ± SD | N = 3617, Range of Means | ||||
| Physical functioning | 80.65 ± 20.96 | 58.20–94.92 | 3.17 | 0.13–0.69 | .308 |
| Social functioning | 59.69 ± 25.68 | 71.68–89.76 | 21.13 | 0.04–4.05 | .000*** |
| Role limitations due to physical health | 34.78 ± 39.61 | 52.46–95.80 | 46.83 | 0.86–5.88 | .000*** |
| Role limitations due to emotional problems | 28.37 ± 33.32 | 62.21–93.14 | 53.62 | 0.59–3.23 | .000*** |
| Mental health | 44.49 ± 18.89 | 60.63–72.85 | 23.00 | 0.82–4.27 | .000*** |
| Vitality | 41.43 ± 21.48 | 47.94–67.86 | 17.94 | 0.44–2.84 | .000*** |
| Bodily pain | 59.83 ± 23.86 | 59.68–86.82 | 11.89 | 0.09–0.84 | .001** |
| General health | 62.28 ± 22.16 | 58.61–82.36 | 6.30 | 0.16–1.85 | .056 |
Abbreviations: ES, effect size; SF36, Short Form 36.
aP value for t test matched by sex and age.
***P < .001.
**P < .01.
*P < .05.
ES Range of standardized effect sizes calculated using age- and sex-specific French population norm.
Discussion
In concordance with literature, the majority of the caregivers were the partners of the patient, and more than two-thirds were female.13,15,20,25–27 As recent research suggests, caregivers' QoL was compromised by the disease and its treatment. Caregivers experienced increased symptoms of depression, anxiety, psychosomatic symptoms, strain in intimate relationships, and diminished physical health.9,20,28
As expected, patients' functional status was correlated with caregivers' QoL. Caregivers of glioma patients with a loss of independence reported more burden than caregivers of patients with good scores for performance status. Surprisingly, participants with a longer caregiver situation reported higher psychological and physical well-being but also reported diminished self-esteem, and QoL scores did not differ between caregivers of patients in their first line of treatment and caregivers of patients in their second or third line of treatment. It is possible that coping strategies or a response shift phenomenon could explain these results. However, these findings do not indicate that caregivers' QoL does not change along the care trajectory. Longitudinal studies should be conducted to enhance the literature.
According to Sherwood et al, caregivers of patients with gliomas are a unique subset of oncology caregivers, so the results of this study are not surprising.18 Only 2 dimensions of the CarGOQoL were significantly different between caregivers of patients with gliomas and other caregivers, burden and leisure time, which demonstrated significant effect sizes. Even without significant differences, caregivers of patients with gliomas reported lower scores in the dimensions of physical well-being and administration and finances than other oncology caregivers, with both dimensions presenting meaningful effect sizes.
The increased burden reported in our sample could be due to the specificities of gliomas. Unlike other caregiver populations, caregivers of patients with gliomas have to manage resultant complications, particularly when dealing with confusion, delirium, hallucinations, or violent behavior.3 Also, glioma patients frequently develop a loss of independence. When compared with other cancer populations, glioma patients have higher rates of dependent status,29 and their need for assistance with activities of daily living such as dressing, walking inside the home, and bathing increases the burden on their caregivers.29 Difficulties with daily activities are less frequently reported by others caregivers.30 Certainly, a high burden has already been associated with caring for family members with complex care needs.15 As found by Parvataneni et al, caregivers of glioma patients reported dissatisfaction because they have less time for their personal needs;25 this could be a direct consequence of increased burden.
Caregivers of glioma patients also reported diminished physical well-being and more difficulties with administration and finances compared with other caregivers, which could be explained by problems concerning the instrumental activities of daily living such as transportation, laundry, and shopping. In fact, patients' dependencies with these activities seemed to be the primary cause for their caregivers’ exhaustion.29 When analyzing this point, we have to take into account the specificity of the French medical system; results for the administration and finances dimension may be different in nongovernmental health care systems.
Scores between the case group and the control group for other CarGOQoL dimensions exploring psychological well-being, coping, and self-esteem were similar. Indeed, psychological distress of caregivers for patients with brain tumors was well within the levels of distress previously reported from other cancer patient groups and their caregivers.31 In addition, caregivers of patients with gliomas seem to cope well, as reported in a qualitative study .14 They reported an overall sense of well-being, coping, control, and acceptance.14 With regard to the dimensions of social support, private life, and relationship with health care, Muñoz et al reported that caregivers of glioma patients indicated (during a focus group) that they had support from family, friends and medical staff.14 In general, our results suggest that oncology caregivers are impacted at the same level for all of these CarGOQoL dimensions.
Our approach, which uses a specific tool assessing caregivers' QoL, seems to be pertinent. In our study, no significant differences were isolated between the case group and the control group by SF36. This is consistent with a study by Boele et al, who reported that the QoL for caregivers of patients with low-grade gliomas and those of patients with low-grade hematological malignancies did not differ, at least not when using the SF36.26 This finding highlights the importance of using specific tools for assessing QoL and the differences between caregiver populations, such as those observed in this study.
Our results showed that caregivers of patients with gliomas had significantly lower mean SF36 scores for social functioning, role limitations due to emotional problems, and mental health when compared with the normal population, which is in accordance with the Finocchiaro results.13 However, we also found lower scores for role limitation due to physical health, vitality, and bodily pain, whereas other researchers were unable to find such differences. Indeed, when compared with the Italian normative population, higher scores were found for role limitation due to physical health and general health, while lower scores were reported for vitality.13
The global results are similar to previous studies reporting that caregivers' QoL was significantly lower for caregivers of patients with cancer in general,11 and gliomas in particular,13,15 than the normal population.
Limitations
Several limitations of the study should be discussed. Because malignant brain tumors account for a small percentage of all cancers, the small sample size of caregivers is one limitation of the present study. Some of our nonsignificant results could be a result of type II statistical error resulting from this low sample size. However, there are very few studies in this field, and a comparison with other caregivers was needed. In addition, the caregivers in our sample were closer to the diagnostic phase than those in other studies. Patients with grade II and III tumors were included in the early stage of disease. As a consequence, different phases of disease may have influenced caregiver burden and perception of QoL.
Another limitation that needs to be taken into account is the heterogeneity of the control group with respect to patients' disease course and subsequent diversity of prognosis. Disease stages of the patients of the control group were not reported due to our heterogeneous sample, in which staging systems were specific for each type of cancer. Further studies should give more details of patients' functional status. Caregivers of patients with cancer involving the central nervous system should be excluded from the control group. Finally, data concerning the educational level of caregivers should be collected because it has been reported in other studies to be an important factor related to coping strategies and caregiver QoL.26
Despite these limitations, this study has analyzed the impact of gliomas on caregivers’ QoL and has shown an increased burden and lower scores for the leisure time dimension than other cancer caregivers. This finding could be explained by the unique care situation in which patients become increasingly limited physically and cognitively. Often, changes in the cognitive abilities, personality, and behavior of the patient negatively impact the caregiver's QoL. These types of changes in the patient are less frequently seen with other cancers. The caregiver burden of suffering and despair is often neglected. Neuro-oncology professionals could consider additional therapeutic counseling and psychoeducational sessions with caregivers of patients with gliomas to alleviate the burden specific to this population. Finally, because the caregiver's QoL is considered to be part of the clinical outcomes that are impacted by the patient's treatment, the CarGOQoL could be considered for clinical trials of patients with gliomas.
Authors' Contributions
PMF participated in the design of the study, performed the statistical analysis, and drafted the manuscript. OC contributed in the design of the study, collected data in clinical records, and helped to draft the manuscript. JB participated in the design of the study and helped to draft the manuscript. PA conceived of the study, participated in its design and coordination, and helped to draft the manuscript. All authors read and approved the final manuscript.
Funding
This work was supported by 2 research grants from the French National Institute of Cancer (INCa ACI 2004 and INCa AOQV 2006) and one from the French Institute for Public Health Research (IReSP).
Acknowledgements
We thank the Clinical Staff of the Neuro-Oncology service of Timone's Hospital, especially Céline Boucard, clinical research assistant.
Conflict of interest statement. There are no financial disclosures from any authors, nor are there personal or other relationships with any person or organization that could inappropriately influence this work.
Ethics and Legal Framework
Regulatory and Ethical Aspects
Participation for participants was on a totally voluntary basis. The study objectives were explained to the participants, and informed consent to participate in the study was obtained from all. Investigators ensured compliance with the Good Clinical Practice Procedures in accordance with the Declaration of Helsinki. The study was carried out in accordance with French laws (Code de la Santé Publique, article L.1121-1/Loi de Santé Publique n°2004-806 du 9 août 2004 relative à la politique de santé publique et ses décrets d'application du 27 août 2006) and regulations. According to French laws, this research did not need approbation of authorities (neither Comité de Protection des Personnes, nor the Agence Française de Sécurité Sanitaire des Produits de Santé) because all investigation procedures were conducted in clinical practice.
Confidentiality
In accordance with laws (Loi du 9 août 2004, Loi Informatiques et Libertés du 6 janvier 1978, modifiée par la loi du 1er Juillet 1994 et Décret du 9 Mai 1995) and regulations (Commission nationale de l'informatique et des libertés and Comité consultatif sur le traitement de l'information en matière de recherche dans le domaine de la santé):
- All records identifying the participants will be kept confidential and will not made publicly available.
- Study findings stored on a computer are stored in local data protection.
- Each participant was informed that representatives of the principal investigator or regulatory authorities inspected their medical records to verify the information collected.
- If the results of the study are published, the participants’ identities will remain confidential.
Message of the Manuscript
This study analyzed the impact of gliomas on the caregivers' quality of life and has shown increased burden and lower scores for the leisure time dimension than other cancer caregivers.
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