http://informahealthcare.com/bij ISSN: 0269-9052 (print), 1362-301X (electronic) Brain Inj, 2014; 28(11): 1381–1388 ! 2014 Informa UK Ltd. DOI: 10.3109/02699052.2014.919536

ORIGINAL ARTICLE

Long-term health-related quality-of-life in patients with acquired brain injury and their caregivers Jana Vogler1, Anke-Maria Klein1,2, & Andreas Bender1,3 1

Department of Neurology, 2Department of Physical Medicine and Rehabilitation, Ludwig-Maximilians-University, Munich, Germany, and Department of Neurology, Therapiezentrum Burgau, Burgau, Germany

3

Abstract

Keywords

Objectives: The present study aimed to assess long-term health-related quality-of-life (HRQoL) and potential predictors as well as burden in caregivers of patients with acquired brain injury (ABI). Furthermore, depressive symptoms, well-being, HRQoL and happiness were evaluated in caregivers and patients who had regained communication skills. Research design: Prospective cross-sectional survey. Methods: Data of 104 caregivers and 30 patients were analysed. A multiple linear regression model was calculated to identify independent predictors for HRQoL in caregivers. Additionally, correlation analysis was conducted to evaluate associations between patient questionnaire results and caregiver HRQoL. Results: After a mean time post-injury of 18 years, HRQoL and perceived health status in caregivers remained below normative scores of age-matched controls. Although HRQoL and perceived health status were lower in patients than in caregivers, there was no difference in happiness, perceived QoL or enjoyment of life. Reduced perception in well-being (WHO-5 score513) was found in 52% of the caregivers and 36% of the patients. HRQoL in caregivers was predicted by well-being, caregiver strain, depressive symptoms and caregiver age. Furthermore, HRQoL of caregivers was correlated with depressive symptoms and happiness in patients. Conclusion: This study under-scores the importance of long-term support for caregivers.

ABI patients, caregivers, long-term HRQoL, well-being

Introduction Physical, emotional and cognitive functioning varies enormously in severely affected survivors of acquired brain injuries (ABI) [1]. There is a substantial proportion of patients regaining at least partial functional independence, but others remain in the unresponsive wakefulness syndrome (UWS) or the minimally conscious state (MCS) for many years. UWS is characterized by complete absence of behavioural evidence of self- or environmental awareness, whereas in MCS there is a persistent, but limited conscious interaction with the environment [2, 3]. A patient is considered minimally conscious if he or she is able to perform at least one of the following tasks: reproduce movements to command, fixate visually on objects, localize noxious stimulation, verbalize or communicate intend non-verbally [4]. For survivors of ABI, family caregivers play an important role in providing social, emotional and practical support [5]. However, such caring is often associated with high levels of distress, depression, grief, anxiety, reduced perception of quality-of-life (QoL) and other physical and emotional health issues. This can be observed for up to at least 15 years Correspondence: Andreas Bender, Department of Neurology, LudwigMaximilians-University, Marchioninistr. 15, 81377 Munich, Germany. Tel: +49 8222 404-120. Fax: +49 8222 404-453. E-mail: anbender@ med.uni-muenchen.de

History Received 19 August 2013 Revised 26 March 2014 Accepted 26 April 2014 Published online 19 June 2014

post-injury [6–10]. Even secondary and tertiary caregivers are affected by these problems [8]. Caring for patients with ABI puts high demands on caregivers, especially due to the long-term dependencies of patients [11]. At the same time, many caregivers feel their need for emotional support and assistance to be unmet [10]. Attempts to predict family caregiver adjustment on the basis of the severity of patient injury showed weak relationships to caregiver strain beyond 3 months post-injury [10, 12]. However, predictors of caregiver depression were found to be self-reported caregiver physical symptoms and ineffective approaches to problemsolving [6]. Caregiver strain was shown to be closely related to caregiver mood, negative affectivity and caregiver’s perceptions of the patient’s abilities in extended activities of daily living [13, 14]. It was suggested that persistent caregiver strain might also be associated with caring for patients who had undergone tracheostomy less than 14 months before [15]. Additionally, several societal factors (e.g. smaller family sizes, greater geographical separation, increasing complexities of the changing healthcare system) may be potentially contributing to caregiver strain [16]. Emotional and behavioural changes in patients were found to be strong predictors for burden and psychological distress in caregivers, whereas cognitive difficulties seemed to play a minor role [12]. Close association between neurobehavioural dysfunction and the mental health of their family caregivers

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has been documented, especially in patients with ABI [17, 18]. It was argued, however, that this relationship is mediated by the level of social participation achieved by the patient, emphasizing the important role of patient social/ behavioural functioning on their caregivers’ mental health [19]. This is not surprising given the importance of, e.g. communication abilities for both recovery and QoL in traumatic brain injury (TBI) survivors [20, 21]. Nonetheless, the role of the patients’ functional status is ambiguous. One study only found a weak association between patients’ physical functioning and caregiver burden or psychological functioning, whereas another study showed that lower scores on the Barthel Index were associated with higher caregiver burden [12, 22]. Moreover, a higher amount of time spent helping the patient, a lot of physical support and spending less time with the patient in general were identified as independent predictors for a higher amount of caregiver strain [23]. The existing studies on distress, burden, strain, physical impairments or psychosocial difficulties in patients with ABI and their caregivers typically do not look beyond 5 years post-injury [5, 6, 8, 10, 23–25]. There are even fewer studies that address specifically the issue of health-related QoL and its associated potential predictors in patients with ABI and their caregivers 5 years after injury [9]. Therefore, the objective of this study was to assess long-term healthrelated quality-of-life (HRQoL) and potential predictors as well as well-being and happiness, caregiver strain, depressive symptoms and burden. At the same time, caregivers’ attitudes towards the healthcare system and other ethical issues were examined. Also, depressive symptoms, well-being, HRQoL and happiness should be evaluated in patients who had regained communication skills after a time of at least 7 years post-injury. Knowledge of the likely long-term caregiver burden may be an important factor when discussing and choosing the type and setting of care following acute hospital and rehabilitation discharge.

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assessment for relatives and caregivers included the Modified Caregiver-Strain-Index (MCSI) and the Burden Scale for Family Caregivers (BSFC). All other measures, namely the Beck Depression Inventory (BDI), the WHO Well-being Index (WHO-5), the Euro-Qol (EQ-5D) and single items of the Gross National Happiness Index (GNH), had to be rated by both groups, caregivers and patients (if applicable). Modified Caregiver Strain Index (MCSI) As a measure of subjective strain, this study used the revised version of the Modified Caregiver Strain Index (MCSI), a screening instrument with 13 26-point items in which higher scores indicate higher strain in caregivers [26]. MCSI assesses the following stressors: inconvenience, confinement, family adjustments, changes in personal plans, competing demands on time, emotional adjustments, upsetting behaviour, personality changes in the patient, work adjustments, sleep disturbance, physical strain, financial strain and helplessness [27]. Validity and reliability of MCSI were found to be 0.41 and 0.75, respectively [28]. Burden Scale for Family Caregivers (BSFC) In order to examine the impact of physical discomfort on the subjective burden of caregivers, this study employed the Burden Scale for Family Caregivers (BSFC), a questionnaire developed in Germany in 1993 [29]. The BSFC follows closely the guidelines proposed by the German College of General Practitioners and Family Physicians. It comprises 10 items rated on a 4-point scale (0 ¼ not correct, 3 ¼ absolutely correct). Burden is classified into the following three categories: low (0–9 points), moderate (10–20 points) or high (21–30 points) [30]. The BSFC has been reported to be psychometrically sound (Cronbach’s alpha ¼ 0.87, split-half reliability ¼ 0.80, test–re-test reliability ¼ 0.72) [31]. The Beck Depression Inventory (BDI)

Method Subjects and data collection After receiving approval by the local institutional review board of the University of Munich, Germany, 615 questionnaires were sent out to members of the association Bundesverband Scha¨del-Hirn-Patienten in Not e.V, a nationwide support organization for patients with severe ABI and their relatives. Caregiver/patient couples were included if time post-injury was at least 7 years.

The BDI is a screening instrument for depression and includes 21 items [32]. Each item has to be rated on a 4-point scale (0–3) with higher scores suggesting more severe symptoms consistent with depression. For this study the recommended cut-off score of greater than 10 was used to classify a patient as at risk for depression or worse [33]. This study used the German version developed in 1991 [34]. The BDI has good internal consistency (Cronbach’s alpha  0.84) and reliability (r  0.75) [35]. WHO Well-Being Index (WHO-5)

Measures Demographic, clinical and ethical variables were assessed using self-developed questionnaires. Ethical aspects included the attitude towards withdrawal of life-sustaining therapy and questions about their hope for improvement in the future that has to be rated on a 11-point scale from 0 ¼ ‘could not be worse’ to 10 ¼ ‘could not be better’ (i.e. Please rate your hope that your relative will be able to speak in the future? Please rate your hope that your relative will be able to live independently in the future?). Also, the

This study measured general well-being with the WHO Well Being Index (WHO-5). The WHO-5 is a widely used and wellvalidated instrument for evaluating well-being. Its validation includes older subjects (mean age ¼ 70.3) [36]. This questionnaire was originally developed to evaluate well-being in patients with diabetes by the Psychiatric Research Unit, WHO Collaborating Centre for Mental Health. The second version of a shorted form was introduced by the WHO in 1998. The current version consists of five 5-point scale items (0 ¼ at no time, 5 ¼ at all times) that assess well-being

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retrospectively (i.e. in the past 2 weeks) [36]. It has good homogeneity (Mokken’s coefficient40.3) and high internal consistence (Cronbach’s alpha ¼ 0.95) [36]. Euro-Qol 5 (EQ-5D) In order to obtain a single index for HRQoL, this study used EQ-5D, a self-report HRQoL questionnaire [37]. EQ-5D was developed by the multi-national research group Euro-Qol and has been reported to measure reliably non-disease specific HRQoL (reliability ¼ 0.71–0.80) [37, 38]. The following five domains relevant to HRQoL are measured on a 3-point scale: mobility, self-care, usual activities, pain/ discomfort and anxiety/depression. Furthermore, it assesses perceived health state on a visual analogue scale (VAS; 0 ¼ worst imaginable health state, 100 ¼ best imaginable health state). Happiness This study selected four items from the Gross National Happiness Abridged Survey (GNHAS). The GNHAS was developed by Pennock and Ura based on an earlier and much longer version used by the government of Bhutan for public policy making [39, 40]. Both versions of GNHAS are based on the assumption that happiness is multi-dimensional. The survey comprises 290 items assessing the following nine domains: psychological well-being, health, education, culture, time use, governance, community vitality, ecological diversity and resilience and living standards. The psychological wellbeing domain is divided further into life satisfaction, emotional balance and spirituality. Four items were selected from the life satisfaction section of the survey and translated into German. Only these four items were selected because it is believed that they offer an optimal overview of the perceived happiness of an individual. The first selected item allows the respondent to rate on a 10-point scale (1 ¼ not very, 10 ¼ very) the extent to which he/she considers himself/herself to be a happy person. The second item asks the participant to assess his/her QoL on a 5-point scale (1 ¼ very bad, 5 ¼ very good). The third item is a 4-point scale evaluating life enjoyment (1 ¼ not at all, 4 ¼ very much). The fourth item is a modified version of a life satisfaction item from the GNHAS survey, namely, an open-ended question asking participants to name factors contributing to their individual happiness. Statistical analyses This study performed a least squares multiple linear regression analysis to explore the relationship between HRQoL (EQ-5D index) and several patient and caregiver characteristics. It looked at the following patient characteristics: age, time post-injury, living situation (e.g. at home, skilled nursing facility, assisted living facility) and tracheostomy. The caregiver characteristics investigated as potential predictors were age, sex, relationship to patient, attitude towards withdrawal of life-support, questionnaire responses, amount of caregiver payment and financial ruin due to the medical condition of the patients. All potential predictors that reached significance in an univariate linear regression model and p50.20 in the multiple model were used in the final model.

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Due to the small patient sample size Spearman correlation coefficients were calculated to assess the association between patient measures and HRQoL in caregivers. Two-sample t-tests, Mann-Whitney-U-tests and Chi-Squared-tests were calculated to analyse significant differences between caregivers and patients. The level of significance was set at p50.05. The statistical packages SYSTAT 11 (SYSTAT Software, Inc., 2004) and SPSS 20 (IBM/SPSS, 2011) were used for data analysis.

Results Out of a total of 615 contacted caregiver/patient couples, 116 questionnaires were received back from caregivers (19%) and 30 from patients (5%). The questionnaires of 12 caregivers were excluded from analysis because they did not fulfil the selection criterion (i.e. post-injury period was less than 7 years). Since 53% of patients had either UWS or were in MCS and the rest had emerged from MCS, it is not surprising that communication with 53% of the patients in the sample was considered either impossible or difficult to assess. Although 47% of the caregivers stated that their patient is able to communicate, only 26% of the patients were able to provide data on the self-report measures for patients. Characteristics of caregivers and patients are shown in Table I. Mean scores of caregiver and patient questionnaires are shown in Table II. As the CSI and BSFC enquire similar domains in caregiver strain, the two questionnaires are strongly correlated (r ¼ 0.68, p50.001). Caregivers As shown in Table II, slightly more than half (51%) of caregivers had BDI scores higher than the instrument’s cut-off (i.e. 10 points). An item analysis revealed that 8.6% of the caregivers had suicidal thoughts, 1.7% expressed the wish and 0.8% were willing to commit suicide. Also 8.6% of the caregivers looked discouraged into the future, 3.4% reported that there is nothing they can look forward to and 16.3% rated the future as hopeless and thought that there will not be any improvements. In 5.2% of the caregivers, sleep was severely impaired. Slightly more than half (52%) of caregivers in the sample had WHO-5 scores 513, indicating a reduced perception in well-being. Caregivers named the following factors as contributing to their happiness: health (58%), family (43%), friends (40%), financial security (27%), spare time (22%) and faith (19%). The mean score of caregivers of survivors of ABI on the EQ-5D was 70.4, below the normative mean score (73.0) for Germans in the age group 55–64 [41]. Data gathered on HRQoL of caregivers with the EQ-5D indicated that 66% experienced pain or discomfort, 41% had difficulties with anxiety/depression, 33% had to withdraw from their usual activities, 19% faced a reduced mobility and 4% had self-care problems. On the visual analogue scale (VAS) of the EQ-5D, 41% of caregivers rated their health state at 75 or higher. No differences were found between mothers and wives in any of the self-report measures, except for perceived health state as measured by the VAS of the EQ-5D (EQ-5D VAS mothers ¼ 59.3, SD ¼ 18.9; wives

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Table I. Characteristics of caregivers and patients.

Characteristics Sex, n (%) Male Female Age (years) Mean (SD) Range Relationship of caregiver, n (%) Mother Father Wife Husband Time post-injury (years) Mean (SD) Range Main diagnosis, n (%) Traumatic brain injury Anoxic-ischemic encephalopathy Current level of consciousness, n (%) Unresponsive wakefulness syndrome (UWS) Minimally conscious state (MCS) Emerged from MCS Communication with the patient, n (%) Possible Impossible Do not know Living situation, n (%) At home Skilled nursing facility Assisted living facility Age at admission to ICU (years) Mean (SD) Range Current medical treatment, n (%) Tracheostomy Feeding tube

Caregivers (n ¼ 104)

Patients (n ¼ 104) (information given by the 104 caregivers about their patient)

31 (30%)* 73 (70%)

56 (54%) 48 (46%)

60 (13.7)** 22–79

43 (13.8) 16–81

50 26 8 14

(48%) (25%) (8%) (13%) 18 (4.5) 7–35 66 (63%) 30 (29%) 33 (32%) 22 (21%) 49 (47%)

50 (48%) 33 (32%) 21 (21%) 63 (61%) 26 (25%) 11 (11%) 25 (13.8) 0–63 15 (14%) 52 (50%)

*significantly less male caregivers; **significantly different from the patients. ICU, intensive care unit.

¼ 71.5, SD ¼ 13.4). Male caregivers scored higher on the EQ5D index than female caregivers (p ¼ 0.00; see Figure 1). The majority of family caregivers were satisfied with physicians (86%), care attendants (92%) and therapists (88%). However, 66% felt abandoned to some extent by the healthcare system, while nearly half (48%) wished their healthcare system would provide more support to improve their particular situation. Co-payments for the care of the patients were on average USD 634 per month (range ¼ USD 0–12 425, SD ¼ 1543.6). At the time of the study 14% of caregivers were either dealing with financial ruin or were facing a possible ruin in the near future due to the medical condition of the patients under their care. On a 10-point scale (0 ¼ could not be worse, 10 ¼ could not be better), caregivers evaluated the ability of the patients under their care to communicate at a mean of 4.7 (SD ¼ 3.2). On the same scale caregivers rated their hope that the patient would be able to communicate in the future at a mean of 3.7 (SD ¼ 3.8) and that the patient would be able to live independently in the future at 1.9 (SD ¼ 3.2). No significant correlation was found between time postinjury and hope for improvement. (Spearman correlation

coefficient for regaining communication skills: r ¼ 0.0 and for being able to live independently: r ¼ 0.1). Male caregivers felt greater hope (p ¼ 0.02; male: mean ¼ 3.4, SD ¼ 4.1; female: mean ¼ 1.3, SD ¼ 2.6) that the patient in their care would be able to live independently in the future. Of the caregivers, 18.5% had at least considered withdrawal of life-support from the patients under their care. Patients As shown in Table II, most patients (61%) scored above the cut-off of the BDI (410), which is an indication for possible depressive symptoms. Analysing several items of the BDI separately, 16.7% of the patients were found to have suicidal thoughts and 3.3% of the patients were found to express the wish to commit suicide. Also, 26.7% of the patients looked discouraged into the future, 10.0% reported that there is nothing they can look forward to and 3.3% rated the future as hopeless and thought that there will not be any improvements. Severely impaired sleep was stated by 13.3% of the patients. However, only 36% of patients had scores on the WHO-5 suggestive of low levels of perceived well-being (513 points).

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Table II. Results on well-being, health-related quality-of-life, BDI scores and caregiver burden. Measure

Caregivers (n ¼ 104)

Patients (n ¼ 30)

WHO-5 Mean (SD) 12.4 (6.1) 13.0 (4.3) Range 0–25 2–19 EQ-5D index Mean (SD) 73.6 (22.6)* 51.6 (34.3) Range 13–100 2–100 EQ-5D visual analogue scale (VAS) Mean (SD) 63.7 (21.0)* 51.5 (21.7) Range 10–100 0–90 Beck Depression Inventory (BDI) Mean (SD) 10.9 (7.3) 14.7 (9.6) Range 0–34 0–37 Burden Scale for Family Caregivers (BSFC) Mean (SD) 13.1 (7.8) Range 0–30 Modified Caregiver Strain Index (MCSI) Mean (SD) 13.9 (5.7) Range 0–25 Happiness (these are items considered by the authors to be related to life satisfaction) Happiness mean (SD) 4.3 (1.8) 5.4 (2.0) Range 1–10 1–10 Quality-of-life mean (SD) 3.5 (0.8) 3.1 (1.0) Range 2–5 1–4 Enjoyment of life mean (SD) 2.5 (0.7) 2.7 (0.8) Range 1–4 1–4 *significantly different from the patients. Table III. Standardized coefficients, t-values, p values and R2 of the least square linear regression model for predicting health-related quality-of-life in caregivers. EQ-5D indexa

Independent variables WHO-5b MCSIc BDId Age of caregivers

Standard. coefficient

t

p

0.42 0.15 0.36 0.24

3.64 1.42 3.40 2.27

0.00 0.16 0.00 0.03

adjusted R2 0.60

Questionnaire scores of caregivers: aEuro-QOL 5 index; bWHO Well-being Index; cModified Caregiver Index; dBeck Depression Inventory. Figure 1. Scores of the EQ-5D index in male and female caregivers. Note that the EQ-5D scale starts at the level of 60.

Data gathered with EQ-5D indicated that 71% of patients had to withdraw from their usual activities, 61% had mobility problems, 54% had difficulties with anxiety/depression, 50% found self-care challenging and 43% reported pain or discomfort. Patients named the following factors as contributing to their happiness: family (43%), friends (26%), recovery of abilities such as walking or writing (26%), general health (22%), faith (9%) and financial security (9%). Least squares multiple regression and correlation analysis Table III shows the results of a least squares multiple regression performed to find predictors of HRQoL in the patients in this sample. Caregiver’s age (being young),

caregiver’s level of strain (low MCSI scores), caregiver’s perceived well-being (high WHO-5 scores) and lower BDI scores were found to be independent predictors of HRQoL in caregivers. Correlation analysis revealed a strong association of HRQoL in caregivers with depressive symptoms (BDI scores) (r ¼ 0.32) and happiness (r ¼ 0.42) in patients.

Discussion Caregivers With respect to HRQoL, the mean score of caregivers of ABI survivors on the EQ-5D was 70.4, thus approaching but not reaching the normative mean score (73.0) for Germans in the age group 55–64 [41]. Ko¨nig et al. [41] reported, in a study on the health status of the German population, that 64% of participants had no problems in any of the five items of the EQ-5D. In this study that was the case only for 11%

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of caregivers. However, 41% of them rated their health state as 75 or higher on the VAS of the EQ-5D. This study found that young age was an independent predictor for high HRQoL as measured by the EQ-5D. This is concordant with a study by Ko¨nig et al. [41], where the proportion of participants having moderate-to-severe problems in all five dimensions of the EQ-5D increases with age. Sander et al. [42] found that the psychological health of caregivers of patients with closed head injury was predicted by the mean time span after injury. However, in this study mean post-injury time span alone did not predict HRQoL in caregivers. As in previous studies, the majority of caregivers (70%) were female, of which 73% were mothers and 19% wives [8, 10]. Female caregivers had lower EQ-5D scores compared to male caregivers, indicating low HRQoL. Ko¨nig et al. [41] provided normative data for Germany on the EQ-5D and also found that women had significantly more problems than men in self-care and pain/discomfort. Unlike Perlesz et al. [8], who reported higher psychological distress in wives compared to mothers, no differences were found between mothers and wives in any of the selfreport measures, except for the VAS (i.e. self-rated health state) of the EQ-5D. It has been suggested that wives may experience higher levels of psychological distress because they must face the loss of the support of a partner and have to shoulder more responsibility than before the injury [8, 10, 43]. A considerably longer mean period of time following injury (mean ¼ 18 years, SD ¼ 4.5) seems to be a possible explanation for the difference between findings in this study and that of Perlesz et al. [8] (mean ¼ 9.3 months, SD ¼ 6.2). The data suggest that wives who have been taking care of survivors of ABI for extended periods of time manage to develop a coping mechanism, thus reducing the initial psychological distress. With respect to well-being, the median scores of the patient and caregiver groups on the WHO-5 did not differ significantly, although 52% of caregivers had lower scores (513 points) as compared to only 36% of the patients. A strong correlation was also found between HRQoL in caregivers with happiness in patients (r ¼ 0.42). This study identified the score on the BDI as a strong independent predictor of high HRQoL in caregivers. More than half of caregivers (51%) as well as patients (61%) surpassed the cut-off of the BDI, which indicates possible depressive symptoms. Rivera et al. [6] found a comparable result (48.3%) for caregivers of patients with TBI in a study where the mean period following injury was much shorter than in this study (mean ¼ 60.8 months; SD ¼ 71.8). Perlesz et al. [8] also reported a considerable difference between patients with ABI (59.7%) and caregivers of survivors of ABI (37.7%). It should be noted that the proportion of patients is comparable to that of the patient group in this study. A strong association was also found between HRQoL in caregivers and BDI scores in patients (r ¼ 0.32). This is in line with findings in a study by Carod-Artal et al. [44] that reported a weak but significant association between depression in stroke survivors and the HRQoL of their caregivers (r ¼ 0.15). However, Carod-Artal et al. [44] did not find that HRQoL was predicted by depressive symptoms.

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To the authors’ knowledge, there have been no studies in which the MCSI was used to measure strain in caregivers of patients with ABI. In this study the mean MCSI score was higher (mean ¼ 13.9, SD ¼ 5.7) than the one reported by Giovannetti et al. [45] on strain in caregivers of chronically ill older patients (mean ¼ 7.3, SD ¼ 5.9). The median of the MCSI in this study (median ¼ 14, range ¼ 0–25) also exceeded that of caregivers of patients with Parkinson’s Disease (median ¼ 5, range ¼ 0–25) in a study with a mean period of time following injury of 7.5 years [46]. In a study on strain in caregivers of stroke victims, Bugge et al. [23] reported that a poor perceived health state was significantly associated with high levels of strain. Similarly, it was found that low strain, as measured by the MCSI, was a predictor of high HRQoL in caregivers. Patients Although 47% of caregivers considered the patient under their care as able to communicate somehow, only 26% of patients could respond to the self-report measures for patients. In comparison to other studies, this is considerably low and seems to suggest that communication skills after emergence from MCS can remain severely impaired. Compared to caregivers, patients reported lower HRQoL on the EQ-5D and self-rated health state (VAS). However, it must be noted that 18% of patients scored 100/100 on the EQ-5D and near the normative score (77.4) of the EQ-5D VAS [41]. Considering the nature of the patient population in this study and a requirement for high levels of care it is surprising that only 71% of the patients had to withdraw from their usual activities. That this number was not 100% may have several explanations. For example, this could be associated with self-reporting errors, the instrument (EQ-5D) itself, the low response rate in this study or the sample being studied. It may be speculated that patients who were able to answer the questionnaires made a very good recovery. Earlier work showed that even a substantial proportion of patients with prolonged severe DOC at discharge from the intensive care unit reached partial functional independence at discharge from rehabilitation [47]. Due to the study design, severity of injury was not measured but it may be speculated that, in a less severely affected patient group after a mean time of 18 years, even full functional independence could be reached. Table II shows that, although patients scored significantly lower in HRQoL and perceived health status, there was no difference in BDI scores, well-being (WHO-5), self-reported happiness, QoL or level of enjoyment of life compared to caregivers. This is not surprising, considering that general health was mentioned as important for individual happiness by only 22% of patients. Due to the small patient sample size in this study, a multiple linear regression model for HRQoL was not performed in patients using questionnaire results as potential predictors. The following independent predictors of high HRQoL in caregivers were identified: caregiver age (being young), higher perceived well-being (WHO-5), low caregiver strain (MCSI) and lower BDI scores. The following factors were not found to be independent predictors of high HRQoL in

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caregivers: patients’ living situation (at home, skilled nursing facility, assisted living facility), the attitude of caregivers towards withdrawal of life-support, the amount of caregiver payment and severe financial difficulty (i.e. current or impending financial ruin). It could be speculated that a potentially guilty conscience about not having the patient at home (many caregivers stated this in the free text box) and burden because of more physical support when caring for the patient at home have similar influence on HRQoL. This might explain why the living situation of the patient was not an independent predictor in this model. It might seem logical that younger adult caregivers would have less financial means at their disposal to care for the patient and, consequently, experience lower life satisfaction. However, the results show indications to the contrary. Agerelated decline in functioning seems to be considered more important and the financial burden is perceived as a lesser problem [41]. As in this study total income was not measured, there should be caution in regard to interpretation of this finding. One must point out that this study had several limitations. One of them is the relatively small sample size. Due to a low response rate and severity of patients’ condition, only 104 caregivers and 30 patients could be included. Because of this small sample size, this study may have failed to detect some differences and identify predictors. Furthermore, due to their small number, patient responses could not be used as independent variables in a multiple linear regression model. Another limitation is the use of the BDI. As stated in the methods section, the BDI is a screening instrument, not allowing a diagnosis of depression. Therefore, only the rate of caregivers and patients showing depressive symptoms could be reported. Yet another limitation is the unequal representation in this sample of female and male caregivers. In this study 70% of caregivers were female. Thus, the study results primarily apply to female caregivers and may not be generalizable to male caregivers. Also, potential moderator variables must be taken into account. Some caregivers stated that therapy and medical costs incurred by the patient are covered by social insurance against occupational accidents, which relieves the financial burden in the case of such accidents. This, for example, may be a moderator variable, which was not measured. Also, finally, this study did not evaluate social participation. As shown in other studies, this could also be a moderator variable, affecting the mental health of caregivers [19].

Conclusion Caring for patients with severe ABI is accompanied by great physical and psychological strain. Even after long-term periods the consequences include emotional problems and physical impairments. This study found that HRQoL in caregivers was still below the mean of age-matched controls, even 18 years after the injury. The impact of ABIs on the life of patients and their caregivers is compounded by the financial burden of high co-payments. This study underscores

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the importance of evaluating the burden of long-term care for patients with ABI. To the authors’ knowledge the present study is one of only a handful that attempted to predict HRQoL in caregivers of survivors of ABI and is the first one to use the MCSI to assess the strain of such caregivers [9, 48, 49]. More research with larger samples is needed to identify reliably predictors of HRQoL in caregivers as well as to assess factors impacting HRQoL in order to propose support measures that would enable caregivers to cope better with the significant demands of providing care to survivors of ABI.

Acknowledgements The authors wish to thank the Bundesverband Scha¨delHirnpatienten in Not e.V. for their invaluable co-operation and wish to extend their special thanks to the members, who participated in this study.

Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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