Cerebrovascular diseases are a high priority for European health and social policy makers due to their high prevalence and also to the fact that they cause long-term disabilities and substantial socioeconomic and emotional impacts on daily life 1 . In Luxembourg, they are the principal cause of acquired long-term disabilities and the third leading cause of death 2 . Stroke-related disabilities are not exclusively physical, but dysphasia and memory disorders can threaten person’ sense of self and have substantial socioeconomic, practical and emotional impacts 3 . The consequences of cerebrovascular disease constitute a challenge for individuals to maintain autonomy and life satisfaction (LS) which is a global perceptual measure of the degree of discrepancy between individual aspirations and achievements or contentment 4 5 . The Eurofund (the European Foundation for the Improvement of Living and Working Conditions, a European Union body working in specialised areas of European Union policy) committee considers the monitoring of the individual situation in the society and the social progress of Europeans to be a key element 5 6 . We opted for this approach among stoke patients and their family caregivers in the belief that QoL domains determine LS.

Because of long-term disabilities and high mortality risk over time 2 we need to monitor socioeconomic conditions and health-related issues and their effects on stoke survivors’ LS. Socioeconomic factors such as gender, age, education, and occupation are well-known potential risk factors for a wide range of health-related issues (substance use, mental difficulties, disability, etc.) and mortality 7 . Lower socioeconomic status was associated with a higher risk of stroke 8 . Health may also be altered by motor function problems, post-stroke psychological distress and restrictions in routine, leisure and work activities 9 . Cerebrovascular disease affects health in combination with social and material factors 10 . It may be postulated that the effect of stroke would be greater in families already facing disadvantages in healthcare, and that the effect of health problems will be greater when the individuals confront social disadvantage 11 . A study in the chronic phase found that 12 to 24 months after discharge from inpatient rehabilitation, LS decreased 12 . Another study showed that disability remained highly prevalent three years post-stroke 13 . Post-stroke psychological suffering is associated with impaired quality of life (QoL), functional limitations and healthcare use 14 . Among health-related issues, the knowledge of the respective roles of main stroke-related impaired functions (such as those concerning motor, visual, sensory, language, and memory functions) and QoL domains related to stroke may be useful for policy interventions aiming at improving health and daily life of patients. Indeed, patients may have to adjust their lifestyles, rearrange home, adapt communication styles, and revise plans for the future.

For stroke patients at home, family caregivers (spouses, partners, etc.) may play an important role in patients’ aid, care, and LS. Family caregiver’ LS is thus important. Cerebrovascular disease is an important family issue, particularly for spouses 15 . It affects not only the QoL and mental health of patients but also those of their close relatives 12 13 16 17 18 19 . Compared to controls, caregivers of stroke survivors commonly have lower QoL, higher prevalence of psychological distress, a greater economic burden, and an impoverishment of their social lives 20 21 . The “Helsingborg Declaration 2006 on European Stroke Strategies” highlights the importance of stroke management in several areas 22 in which family caregivers should play an essential role. In Sweden, an amendment in 2009 has recognised repercussions for informal caregivers, and recommends to minimise their physical and psychological strains and burden. But, caregiver strain and its consequence on its LS have remained an under-researched area 23 . Then, a critical question is whether and how patients’ socioeconomic characteristics and stroke-related impaired functions may impact family caregivers’ LS? Another pertinent question is whether among family caregivers, certain QoL domains may affect LS? The knowledge of these issues may identify patients and caregivers because they are now ‘two populations at risk’ for our social and public health system. Social and health-related aspects of QoL survivors and spouse are known to affect their LS, but their respective influence remains unclear 24 .

An important problem concerns stroke-related QoL domains. In the literature, patient’ QoL has been assessed using various generic measures including health-related QoL, Sickness Impact Profile, and Nottingham Health Profile. Most of these measures fail to cover important stroke concerns such as communication, concentration, and memory. A recent review of the literature involving informal caregivers of stroke survivors (with and without aphasia) reported that all instruments used were generic 25 . Stroke-specific instruments available at the start of this study lack comprehensiveness, are not patient-centred and their validity and reliability remain unproved 26 . The Newsqol appears to be an appropriate stroke-related measure in terms of dimensions explored. But, no investigation has studied the relationship between LS and Newsqol 27 while it is of interest to know which Newsqol dimensions are affected by cerebrovascular disease and may influence LS.

The present study aimed at assessing, two years after cerebrovascular disease onset, effects on patients’ life satisfaction of socioeconomic factors, impaired functions (motor, visual, sensory, language, and memory), quality of life (via Newsqol which measure stroke-related QoL dimensions), and their family caregivers’ QoL (via Whoqol-bref which measures physical, psychological, environment, and social relationship domains) in Luxembourg. The survey further evaluated the effects of these factors on the family caregivers’ life satisfaction.

The participation rate was 94/374 = 25.1%. Comparisons between the socio-demographic characteristics (age, gender, nationality, commune of residence, number of admissions to hospital) of the study sample and of the general population showed no differences 28 .

This study demonstrated that, two years after cerebrovascular disease onset, survivors’ life satisfaction was higher among women and lower among patients at home with no occupation (compared with retired people) and that family caregivers’ life satisfaction was affected by caring for patients with impaired memory function. It further showed that patients’ life satisfaction positively correlated with the five following Newsqol dimensions: feelings, sleep, emotion, cognition and pain, but did not correlate with any caregivers’ Whoqol-bref domain. Family caregivers’ life satisfaction was associated with patients’ feelings and emotion dimensions only. It was strongly linked with the four caregivers’ Whoqol-bref domains (physical health, psychological health, environment, and social relationships). Many patients suffered from impaired sensory function (44.7%), motor function (35.1%) and memory function (31.9%).

The main finding of our study at home is the similarity of associations of both patients’ LS and family caregivers’ LS with feelings and emotion stroke-related Newsqol dimensions. This suggests that strong psychological repercussions may be generated for both patients and family caregivers. If we intervene at the level of the determinants of QoL of patients, we would improve their satisfaction with regard to life. Using Newsqol revealed strong associations between four dimensions of pain, cognition, sleep and fatigue due to the stroke, and patients’ LS. This is of interest and not previously reported (in terms of stroke-specific QoL measures). Consequently, physical and psychological suffering as a repercussion of cerebrovascular disease needs to be assessed. The Newsqol appeared here as an appropriate tool to produce useful indicators to be considered in programs for stroke patients with disabilities 24 . Stroke-related upheavals can be minimised if professionals assist patients with a healthcare and social system which would provide preventive intervention with video, and psychosocial services using new IT technology (telephone, videophone, telestroke) 37 .

Our study revealed relationships of patients’ LS with occupational status and gender which also deserve attention. Gender may include both gender social role and sex (biological meaning). We observed that patients with no occupational activity had lower LS. Having a job was linked with moderate LS and retired people had the best LS. We have no definitive explanation for these findings, but some hypotheses arise. First, unlike people at home with no activity and despite their handicap, retired patients may have less stress or unhappiness and may maintain a social position/identity, which is based not only on age and social characteristics but also on individual’s sense of self 38 . Secondly, access to medical aids and rehabilitation activities, as well as healthcare and prevention, may be easier as retired people have more spare time than working people. Thirdly, participation in community activities to promote ‘health capability’ (health functioning and ability to achieve health goals they value and act as agents of their own health) may be easier among retied people 39 . These activities may improve ability to make relevant choices to promote better health. It may also help to avoid resentment and promote psychological strength and confidence in the future 40 . The fact that the LS was higher in female than in male patients calls for further research on severity, symptoms and potential risk factors such as health-related behaviours, nutrition, leisure, etc. A recent review of literature about stroke risk factors and warning signs reported that, according to most studies, women know more about cerebrovascular disease than do men in most studies 41 . Women are more likely than men to report non-specific "somatic" symptoms and to report changes in their mental status 42 . Our findings are not consistent with those of the European LS survey 4 , which reported small gender difference in various countries. However, this survey found that married people are more satisfied than those who are separated, divorced or widowed, and slightly more satisfied than single people in various country groups. In our dyads, most caregivers were women looking after spouses.

We found that caregivers of patients suffering from impaired memory had lower LS. This may reflect the repercussions of caring for patients with difficulties related to memory loss. Most neurological impairments concerned sensory and memory functions, but more survivors issued from our sample with a caregiver declared sensory and memory-related problems, and two or more domains impaired. Family caregivers had to cope with physical disabilities, but also psychological problems, making some of them exhausted. Home-based rehabilitation requires stroke patients and their caregivers to find new ways, within their families, to solve problems, communicate and deal emotionally with others. Individual or community interventions should redefine their resulting needs 43 . Our result brings to light some contrasting aspects of the literature which suggest that despite the socioeconomic differences between care settings, cerebrovascular disease is a life-threatening and potentially disabling event as well as an important family issue, particularly for spouses 44 . Under Swedish law, the repercussions for informal caregivers have been recognised by an amendment in 2009 which calls for assistance in order to minimize the physical and psychological strain on caregivers and caregiving burden. It also recognises the caregivers’ perspective in guiding interventions, such as support groups and home help. This implies that, within rehabilitation, the dyad could be viewed as one client, with the potential of benefitting from support 45 .

We further found that, in accord with previous studies 7 12 15 , LS was associated with the QoL among family caregivers. All QoL domains were involved: physical health, psychological health, living environment, and social relationship. In contrast, to that, we failed finding an association between stroke survivors’ LS and caregivers’ QoL. This result may be a bit surprising, but it supports the hypothesis that caregivers may not leave caregiving related to their own health-related issues. It may be noted that the LS of study patients and caregivers (7.1 and 7.2/10, respectively) was lower than the national LS indicator in Luxembourg (in 2007, 7.85/10), which was higher than that from the European Quality of Life Survey 4 (7.0 for EU-27), but behind Denmark, Finland and Sweden.

Contextualising our findings poses a challenge for a number of reasons, in particular the economic situation (as regards Luxembourg’s gross domestic product per inhabitant), and the fact that Luxembourg is one of the smallest European countries (524.853 inhabitants (January 2012) area 2600 km² ) and small distances between the population and the health systems. The care structures are thus geographically accessible for the whole population. The socio-demographic characteristics of the study patients (53.6% had an income of more than 36,000€ and 74.5% were of Luxembourgish nationality) also suggest that social and medical supports focussed on community professional-oriented services are easily available. Difficulties associated with maintaining inner-city medical practices 46 and community-care provision vary substantially according to location and income. These factors also influence domiciliary care delivery: distribution of resources at local levels; financial constraints; and the application of eligibility criteria in providing medical and community services 47 .

Two years after stroke onset, a great proportion of cerebrovascular disease patients suffered from impaired sensory function (44.7%), motor function (35.1%) and memory function (31.9%). Life satisfaction was better among women and worse among unemployed socioeconomically active patients. Among survivors, life satisfaction was worse in those suffering from feeling, sleep, emotion, cognition and pain issues, but did not correlate with caregivers’ quality of life. Among family caregivers, life satisfaction was worse in those with patients suffering from issues of feeling (less independent, yourself, life changed, depressed, useless, less control because of stroke) and emotion (get more emotional, fear of another stroke or to become dependent on others); it was associated with all caregivers’ Whoqol-bref domains (physical health, psychological health, environment, and social relationships).The life satisfaction measure, Newsqol, and Whoqol appeared to be good appropriate tools. Our findings may be useful for policy makers about family and medical-social issues of stroke home-based rehabilitation over time.

The authors declare that they have no competing interests.

MB conceived and carried out the research; she was the scientific director of the study and had main responsibility for writing the manuscript. SC conceived the protocol as medical investigator and analysed the data. ELB realised the statistical analysis and participated in data analysis. NC participated in data analysis and in writing the manuscript. All authors read and approved the final manuscript.