Cerebrovascular diseases are a public health concern in the European Union (EU) because they are common and may result in a wide range of severe permanent impairments and associated functional limitations in daily living activities, and because they represent the third leading cause of mortality 1 2 3 4 5 . Cerebrovascular diseases are also a public health issue in Luxembourg, one of the smallest EU countries 2 . Stroke-survivors may have low quality of life (QoL), may have to leave their jobs and may face a number of new problems: unknown severity of stroke, its health consequences, its evolution over time, fear of aggravation, a change in socioeconomic situations, need for care and information about stroke and its consequences, and available help/services 4 6 . These problems may be more pronounced among survivors with more severe stroke that results in multiple disabilities and mental difficulties such as depressive symptoms, and low capability for mobility, self-care, living environment control, and exchanges with others 4 . Therefore, it is important to monitor the QoL of stroke-survivors using the Newcastle Stroke-Specific QoL Measure (newsqol) as it is constructed to evaluate a number of relevant domains including mobility, self-care, pain, vision, cognition, communication, mental feelings, interpersonal relationships, emotion, sleep problems, and fatigue 7 . The newsqol is recommended for assessing the recovery of survivors 8 . It has become a relevant measure to evaluate the functional impairments resulting from stroke and their consequences, as well as care and information from social and medical services needed by the survivors. Such assessment is important for patients during hospitalization, but even more so for survivors living at home. Alteration in issues such as newsqol domains prompts concern about the future in terms of consequences of stroke, daily living activities, desire for improvement and fear of aggravation 9 . Some newsqol domains reflect depressive symptoms, which are associated with injury, disability and premature death 10 11 . One study reported a risk of depression after stroke 12 .

The situation of stroke-survivors is difficult because the level of stroke at onset is often not well established and the evolution of morbidity over time is often unknown, even for carers. The information about stroke given to patients and their families may be limited and uncertain depending on the subsequent changes expected and observed. This situation could leave the survivors and their families uncertain about the future and the care, help and information they may need, as well as about what services are available, who to contact and how to obtain appropriate help, and lacking confidence in the information received. For survivors living at home, the information and help received may be diverse because the level of stroke and associated morbidity may remain unclear over time. Furthermore, because stroke and associated disabilities affect capacity to work, many survivors have to leave their jobs (to retire or become unemployed), which may result in low socioeconomic resources. These issues are likely to be more pronounced among those individuals in lower socioeconomic groups, those with a lower educational level and income, and possibly those with more severe stroke and comorbidity 13 14 . The individuals in lower socioeconomic groups or with a lower educational level may have reduced awareness of the benefits of prevention. It would be of interest to evaluate the ways in which socioeconomic characteristics may impact on various newsqol domains. This raises the problem of identification of most vulnerable people, for whom care services, help, information and prevention should be a priority. Note that reduced QoL has been found to be related to demographic factors and health disorders such as sex, education, comorbidity, and psychological disorders 4 . QoL is shaped by diseases and functional impairments, individual choices and behaviours, but the surrounding environment and the relevance of help and information received are also major determinants 15 . It has been recognised that medical and community support may not be equitably provided, and that socioeconomic status plays a strong role in access to services 16 . The impact of socioeconomic deprivation may increase among survivors, because of functional limitations and reduced daily living activities, leisure and occupational activities 17 . Because stroke is more common among older people, isolation and poor family support, functional impairments, disabilities and reduction in daily living activities 18 associated with ageing should also be considered.

The social services and health systems must ensure that help and information are available and accessible to all stroke-survivors whatever their socioeconomic status 19 20 . The evaluation of newsqol domains and their association with various functional impairments and socioeconomic features is useful for stroke-survivors. It would identify specific functional impairments to be treated and what newsqol domains are reduced, as well as pinpointing the most vulnerable socioeconomic groups. Knowledge of these issues may help stroke-survivors and their families to better understand the situation they find themselves in and facilitate efforts to find care, help and information. It may also help social and medical carers to establish the services, help and information needed by the subjects, especially rehabilitation, and to discuss issues with them in a patient-centred approach, which may reduce the stress of both patients and carers, and improve their cooperation 21 22 23 .

The tasks of social and medical carers who intervene at home may not be easy. Indeed, they may not have received the training they need to face such situations, and the care services and help that they provide may lack coordination. The time available for patients is generally limited. Stroke-survivors may therefore be more exposed to stress, mental difficulties, and an alteration in their QoL, particularly those with more severe stoke. Studies have shown a lack of satisfaction among stroke patients with the provision received, the quality of materials provided, and availability of stroke-related information 24 . Further studies are therefore needed to assess the relationships of dissatisfaction with received information and home-care services with newsqol domains among survivors living at home, after stroke onset. A two-year time lapse may be considered appropriate as the consequences of stroke may be relatively stable by that time. Such studies could provide knowledge to improve the QoL of stroke-survivors, but would also elucidate the training that society has to provide to carers to help them to achieve their tasks. Satisfaction with care received may somewhat reflect the quality of care and increasing it could reduce stress of both patients and caregivers and improve patients’ QoL 25 .

Satisfaction of stroke-survivors living at home is increasingly recognized as a key focus for policies aimed at improving the quality of home-care. It may be useful to explore the expectations and requests of patients, the home-care provided, and its impact on patients’ QoL 26 27 . This issue has remained partially addressed while studies have shown that access to care services varies substantially according to location and income 28 . Appropriate home-care services should improve the patients’ QoL but also foster motivation and reassurance, and provide necessary information.

The present study aimed to explore, among survivors living at home two years after stroke onset: (1) the associations between newsqol and socioeconomic characteristics and functional impairments; and (2) the associations between newsqol and self-reported dissatisfaction with various information and home-care services received.

The present study demonstrates that, two years after stroke onset, the survivors’ perceived QoL was markedly low for the following domains: emotion, sleep, cognition, communication, mobility, mental feelings, pain and fatigue (which are generally known as depressive symptoms) 11 and the alterations were strongly associated with dissatisfaction with information and help received, lack of coordination between services, and concerns about the possibility of receiving help when necessary. The low QoL of survivors reflected in fact the consequences of a wide range of functional impairments, and the most vulnerable survivors were those with low-level education, lower income, or who stopped working. A small difference was observed between Luxembourgers and other nationalities.

We found that, two years after stroke onset, a high proportion of survivors suffered from a number of neurologic functional impairments of which motor, language, memory and sensory impairments had the greatest impact on nearly all newsqol domains. It should be noted that the mean number of functional impairments was two and that various newsqol domains were strongly interdependent, especially those representing depressive symptoms (emotion, sleep, cognition, communication, mobility, mental feelings, pain and fatigue). So, a functional impairment which may alter one of these domains was likely to alter the other domains as well. The stroke-survivors may be exposed to depressive symptoms when their impairments severely affect several domains of QoL. They may see this as reflecting the severity of stroke. One study showed that functional vision loss was associated with depression 33 . Depressive symptoms are known to reduce physical, mental and cognitive abilities, and increase the risk of injuries and premature death 10 11 34 . As a consequence, they may aggravate the situation of patients and favour injuries and long-term premature death. For each subject, the functional impairments and their consequences for QoL should also be globally evaluated by considering their possible cumulative effect. Multiple functional impairments and multiple low QoL domains may increase the dependency of subjects and the need for technical, financial and personal aids. For older people, who were the most represented, the issues are likely to be more complex because of ageing and associated lower income and poor social support 11 .

Our study reports that motor, language and memory impairments were those most correlated with low newsqol domains. Considered alone, language impairment, particularly for aphasia patients, may have a profound impact on QoL at a personal level and in its social components 35 . Speech loss may be associated with extreme emotional reactions and isolation and thereby with poor social relationships. Inability to express oneself during social exchanges/relationships affects self-esteem and induces feelings of humiliation 36 , which could limit subsequent exchanges with others and indeed all activities that involve speaking. Motor impairment was, not unexpectedly, correlated with mobility and self-care, but our study shows that it was also linked with mental difficulties including depressive symptoms, and especially pain and mental feelings. Memory impairment was mainly related with low QoL in cognition, pain, mental feelings, emotion, sleep and fatigue. Memory loss meant here not only failing to remember things, but also perceived losses in the ability to concentrate, think, solve problems, and make decisions. The efforts that subjects had to make every day could be perceived as a new and strange source of frustration 37 . Reduced memory may lead patients to lose sense of context and perspective of time and may result in a perception of being distant from those around them 37 38 39 40 . Memory impairment may therefore also be correlated with the QoL domains reflecting depressive symptoms. Because depression is one of the most prevalent mental disorders in developed countries, a growing contributor to the general burden of disease, and may become the most frequent cause of disability worldwide by 2030 10 11 28 34 41 , and because depressive symptoms were here common two years after stroke onset, our results raise the question of whether they had been appropriately treated. Moreover, a reduction in depressive symptoms means a reduction in injuries (especially work injuries and falls among the elderly), particularly among individuals with lower physical capability, and also a reduction in premature deaths 10 11 34 . It may be indicated that about half of people suffering from psychiatric disorders do not receive proper treatment, even though it can effectively decrease symptom levels and reduce the risk of persistence 42 43 44 . One study in France stated that 60% of individuals who have depression seek medical treatment 45 .

In this study, a small difference in newsqol was observed between Luxembourgers and other nationalities (for pain and vision domains only) while low-level education, lower income and becoming inactive (retired or unemployed) were associated with mobility, self-care and a number of domains concerning depressive symptoms. This may be attributed to possible more severe stroke and to more mental difficulties due to health and socioeconomic problems. These findings identify the subjects most at risk and to whom particular attention should be paid in terms of prevention and intervention. The financial and psychological instability that accompanies negative life events may reveal or revive latent weaknesses that otherwise would not appear and would not affect health. The effects of stroke would be amplified among subjects with socioeconomic disadvantages 46 . Our results are in accord with those of another study, which reported that most stroke-survivors had low QoL, a greater prevalence of stress and depression, more economic burden, and more change in social relationships than the general population 47 . Our findings have to be put into the socioeconomic context of Luxembourg, which is one of the smallest European countries (502,500 inhabitants, area 2600 km²) and has a high gross domestic product per inhabitant 48 . In our study, most stroke-survivors were Luxembourgers, inactive (retired or unemployed) and had over 3000€/per month. Luxembourgers have public or private resources, and services are principally professional. The distances between the population and services are short, and healthcare is geographically accessible to the whole population. The indicator of the quality of the National Health Service is 7.4/10 for Luxembourg vs. 6.2/10 for the EU-15 and 6.1/10 for the EU-27 (2007) 20 .

Importantly, the present study demonstrates that the newsqol domains reflecting depressive symptoms (except the cognition domain) were the most related with dissatisfaction with information and home-care received. This was not surprising because those newsqol domains were strongly related to various functional impairments, which were rather long-lasting as they persisted two years after stroke onset. Our study reveals that a lack of information about stroke and its consequences/change over time, and a lack of accuracy of information received, help received, coordination between services, and of the possibility of receiving help when necessary were the most associated with the previous newsqol domains. There may thus be a true need to understand the disease, to know what consequences can be expected, to be offered good coordination between services, and knowledge about how to find necessary information. Being continuously dissatisfied was found to be correlated with depressive symptoms. However, the relationships may be bilateral. Indeed, people with depressive symptoms, and thus with lower physical and mental capabilities, may perceive the information and home-care received less positively. It should be noted that the issues are of more concern to people with low-level education, lower income, and who left their jobs after the stroke. These results suggest that the newsqol would be a good tool for carers to routinely use to evaluate the problems of patients and to explain and share information and care with them in a patient-centred approach, which is crucial among people with disabilities 23 . Maclean et al. observed that participation in rehabilitation of stroke patients was shaped by favourable attitudes, motivation, reassurance and provision of information 39 . Adherence to treatment is better among patients who perceive the therapeutic communication skill of their physician to be high 21 . Unfortunately, information and care services may not be provided equitably, leaving the people with socioeconomic difficulties with a lack of explanation, treatment, and treatment adherence 23 .

Home-based healthcare requires stroke-survivors to find new ways to solve their problems within their families as well as with medico-social workers and others. We found that dissatisfaction with the possibility of receiving help when necessary was also associated with mobility and self-care. The mobility and self-care of patients may be better evaluated and appropriate technical and personal aids may be provided. The correlation revealed in our study between dissatisfaction with information about consequences/change over time of stroke and vision highlights that some subjects with visual impairment feared an aggravation of their problem and wanted it to be monitored. A weak association was observed between on one hand, being confident about where to get information about stroke, to look after other stroke-survivors or financial help, and being confident about whom to contact from community services if needed, and on the other hand, communication, feelings and interpersonal relationships. This information was thus perceived as less important than the information and home-care actually received. Home-care services can sustain stroke-survivors’ QoL by prolonging the ability to live independently at home which is closely linked to a positive sense of identity 38 . For these reasons, it is necessary to limit discrepancies between survivors’ and professionals’ views of need, bearing in mind that assessment processes favour the professionals’ point of view 49 . Stroke care that supports patients and caregivers by meeting their needs and demands could positively impact their QoL 50 . Therefore, improving home-care services provides an opportunity to interact allowing more effective collaborations between patients and medico-social workers. Professionals can also review their role and their practices in new and comprehensive perspectives 19 . Stroke-survivors and carers should redefine community interventions accordingly. Such approaches could improve the QoL of family-caregivers, which is highly associated with that of patients 22 . Our findings may help public policies aimed at improving professional practices, the quality of care and support, and patient QoL.

Our results further raise the question concerning the needs and satisfaction of stroke-survivors living at home in terms of information and care services as well as interactions with social and medical carers according to recovery stage and possible relapse over time. The changing nature of needs at different stages of recovery may not be paid sufficient attention. A telephone service could help. Use of IT technology has been proposed to promote person-centred rehabilitation 51 . It has been shown, with Telestroke, that videoconference calls can help to reduce stress, provide reassurance about the secondary effects of treatment, improve compliance with prescriptions, and yield valuable information about services 49 . A simple questionnaire measuring functional impairments, newsqol, and dissatisfaction with information and home-care services received/needed may then be administered via telephone to elucidate the situation and reveal changes in need over time.

The present study among survivors living at home, two years after stroke onset, demonstrates that they suffered from a wide range of functional impairments which were associated with low quality of life in a number of domains, especially those reflecting depressive symptoms (pain, cognition, vision, communication, mental feelings, interpersonal relationships, emotion, sleep and fatigue) and also mobility and self-care. Many survivors had a low-level education, a lower income, and had left their job at stroke onset. Various domains of quality of life, especially those reflecting depressive symptoms, mobility and self-care were strongly associated with dissatisfaction with information about stroke and its consequences/change over time, accuracy of information received, help received, coordination between services, and possibility of receiving help when necessary. The newsqol is a good tool which deserves to be routinely used to measure quality of life, the recovery of patients, and their needs in terms of information, help and care. The depressive symptoms identified should be appropriately treated. Our findings may help public policies aimed at improving professional practice at patients’ homes, the quality of care and support, and the quality of life and mental status of stroke-survivors.

The authors declare that they have no competing interests.

MB: conceived and carried out the study, and had the main responsibility for the study and writing the manuscript. ELB: realized the statistical analysis and participated in data analysis. KC: participated in data analysis and in writing the manuscript. NC: participated in data analysis and in writing the manuscript. All authors read and approved the final manuscript.