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)  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 . 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 .
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 . 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 , 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 . 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 [37–40]. 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 [42–44]. One study in France stated that 60% of individuals who have depression seek medical treatment .
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 . 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 . 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 . 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) .
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 . Maclean et al. observed that participation in rehabilitation of stroke patients was shaped by favourable attitudes, motivation, reassurance and provision of information . Adherence to treatment is better among patients who perceive the therapeutic communication skill of their physician to be high . 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 .
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 . 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 . Stroke care that supports patients and caregivers by meeting their needs and demands could positively impact their QoL . 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 . 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 . 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 . 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 . 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.
Strengths and limitations
This study is original in its two-stage specific recruitment process: identification of stroke-survivors based on a medico-administrative database, and then clinical confirmation of the diagnosis based on data from hospital medical records. Our choice to confirm all stroke diagnoses, 2 years after onset, was unusual, but was the only way to exclude pathologies that mimic stroke . Such designs are rare because they are very expensive and it is difficult to organise a study 24 months after stroke onset. The participation rate estimate was low but similar to that in recent literature . The relatively small sample is explained by the proportion of deaths two years after stroke and the limitation to survivors living at home (the study excluded those who were living in institutional settings, those who changed their residence, especially to live with their son or daughter, and those who failed to respond). Among stroke-survivors, aphasic patients were also included in the sample with appropriate interview training for researchers. Studying patients 2 years post-stroke creates an opportunity to provide valuable data about patients’ QoL and their information/care needs in the home-care system. The patient and his or her family may have adapted to their new situation, reorganised their daily lives, and become accustomed to caregiving . Our results should be interpreted with caution for several reasons. We surveyed a small sample of volunteers who gave their consent. Requesting informed consent sent via the postal service may have reduced the response rate. Second, the interviews took place at patients’ homes, which involved intimacy and some people may find this difficult. Third, the participants may be more likely to be concerned by health issues, willing to share their opinions with us and happy to make their views broadly known.