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Stroke Patients' Recognition and Knowledge of Their Own Vascular Risk Factors: A Sociocultural Study
Stroke Patients’ Recognition and Knowledge of Their Own Vascular Risk Factors: A Sociocultural Study Olga Diez-Ascaso, Antrop,1 Patricia Martínez-Sánchez, MD, PhD,1 Mireya Fernández-Fournier, MD, Exuperio Díez-Tejedor, MD, PhD,2 and Blanca Fuentes, MD, PhD2
Background: We aimed to study the knowledge of vascular risk factors (VRFs) among patients with stroke and the elements influencing this knowledge using analysis tools from the fields of social and health anthropology. Methods: A prospective, cross-sectional and observational study in a cohort of patients who had suffered a stroke within the prior 3-12 months. Semistructured, in-depth interviews were conducted by a social anthropologist to evaluate patients’ general knowledge of VRF and specifically of their own VRF. Results: Overall, 96 patients were included, 56.3% male, mean age 61.6 years. Nearly all patients (97.9%) had at least 1 VRF. When asked to name their VRFs, 45.8% named stress, 29.2% dyslipidemia, 28.1% hypertension, 28.1% cigarette smoking, and 13.5% diabetes. The VRFs most frequently recognized by patients as their own were stress, hypertension, dyslipidemia, cigarette smoking, and cardiac disease. Only 15.6% acknowledged all their VRFs, while 52.1% acknowledged some of them and 32.3% failed to recognize any. Naming stress as a VRF (odds ratio [OR] = .204; 95% confidence interval [CI]: .076-.553) was associated with a lower likelihood of acknowledging at least 1 VRF, whereas working outside the home (OR = 11.314; 95% CI, 1.277-100.232) and having 2 or more VRFs (OR = 3.191; 95% CI, 1.0329.875) were associated with a higher probability of correctly recognizing at least one of their own VRF. Conclusions: VRF knowledge is poor in patients with stroke. Stress was the risk factor that patients identified more frequently and it was associated with poorer knowledge of their own VRF. Key Words: Stroke—vascular risk factor—knowledge. © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved.
From the Department of Neurology and Stroke Center, La Paz University Hospital, Autonomous University of Madrid, IdiPAZ Health Research Institute, Madrid, Spain. Received July 14, 2015; accepted August 16, 2015. Address correspondence to Exuperio Díez-Tejedor, Department of Neurology and Stroke Center, La Paz University Hospital, Paseo de la Castellana 261, 28046, Madrid, Spain. E-mail: exuperio.diez@ salud.madrid.org.; Address correspondence to Blanca Fuentes, Department of Neurology and Stroke Center, La Paz University Hospital, Paseo de la Castellana 261, 28046, Madrid, Spain. E-mail: [email protected]. 1 These authors have contributed equally to the manuscript. 2 Principal investigator. 1052-3057/$ - see front matter © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2015.08.018
Cerebrovascular diseases are a leading cause of death and the first major cause of disability in adults. The death rates, disability, and associated costs entail a great burden for patients and society.1 Stroke secondary prevention is based on reducing vascular risk factors (VRFs) through changes in lifestyle habits combined with the best available medical treatment. Population-based studies have shown that patients with stroke have a poor knowledge of VRF, with only 68%-72% being able to name at least 1 established VRF.2 Moreover, population groups with the highest risk of stroke, such as the elderly or those with worse health and eating habits, are precisely those who are less aware of VRF.2,3 This unawareness of VRF, together with other personal or social factors, might be hindering secondary prevention of stroke.
Journal of Stroke and Cerebrovascular Diseases, Vol. 24, No. 12 (December), 2015: pp 2839–2844
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Patients’ knowledge and acknowledgment of their own VRF are essential to modify lifestyle. However, this alone is not enough to achieve a change in behavior even in secondary prevention, as shown in patients suffering from coronary heart disease, because the transition from motivation to action depends on different factors.4 Few studies have focused on analyzing perception, knowledge of, and acknowledgment of one’s own VRF among stroke survivors. It has been reported that up to 43%-57% of patients with stroke failed to recall at least 1 VRF in surveys conducted within the first 48-72 hours from the stroke onset.5,6 One would expect these figures to decrease several months after the stroke when, theoretically, the patient and their family members have been adequately informed by health professionals on VRF and secondary prevention measures, and they have had enough time to cope with their new life after stroke. We aimed to study the general knowledge and the acknowledgment of VRF among stroke survivors 3-12 months after the stroke, as well as the social and cultural elements influencing this knowledge.
Methods We conducted a secondary analysis of a previously published study in which the perception of the stroke event was analyzed in a cohort of stroke survivors using a Social Anthropology approach.7 In brief, the present study was designed as a prospective, cross-sectional, observational study that includes stroke survivors attending a followup visit at an outpatient stroke clinic. Main inclusion criteria were age 18 years or older, history of ischemic stroke 3-12 months prior, and modified Rankin Scale (mRS) score of 0-3. The main exclusion criteria were cerebral hemorrhage, mRS score greater than 3, aphasia, significant dysarthria, cognitive impairment, or severe motor problems that could impede an independent interview with the anthropologist. This study was based on an anthropological perspective following ethnographic techniques such as data collection through in-depth interviews (based on openended questions) and participant observation. By indepth interviews we refer to one-on-one encounters between an anthropology expert and a patient that are directed toward understanding the subjective patient’s experiences and knowledge of the stroke event: what they think might have caused it, how they feel about what has happened, and in which ways recovering from a stroke can influence their lifestyle, emotional experiences, and everyday life situations, as expressed in the patient’s own words with no time limit. Moreover, as a participant observer, the anthropologist entered the field behaving in such a way that become a nonintrusive part of the scene, analyzing the patient’s subjective perception, social relationships, and acquired roles, in relation to a particular study object; attempting thus an approximation, from the
social sciences, to the reality of human behavior.7 This methodology has been used in stroke studies showing its relevance in the identifications of needs as perceived by patients with stroke and their families as well as the barriers to best-quality care.8
Data Management The social anthropologist collected the following: (1) social data: age, sex, educational level, and employment status; (2) knowledge about stroke and VRF, as well as patients’ recognition or acknowledgment of their own VRF; and (3) patients’ subjective perception of their disease. Data regarding previously diagnosed VRF were obtained from the clinical records, including hypertension, dyslipidemia, diabetes mellitus, cigarette smoking, cardiac disease, previous stroke, family history of stroke, obesity, sedentary lifestyle, and prestroke treatments. For the descriptive analysis, we worked through the creation of categories and the analysis of quantifiable variables. Interviews were transcribed verbatim and analyzed in detail following a method of discourse analysis, obtaining categories as analytical units that were studied through triangulation of data. Quantifiable variables were weighted and we conducted a multivariate analysis including clinical data. Statistical analysis was performed using Statistical Package for Social Sciences 15.0 (SPSS, Inc., Chicago, IL) for Windows. Univariate analysis was performed using the χ2 test or Fisher’s exact test for dichotomous variables. Continuous variables were tested with Student’s t-test or Mann–Whitney’s test when normality could not be assumed. P-values less than .05 were considered significant. Logistic regression models were constructed to analyze variables associated with recognition of own VRF. Values are presented with a 95% confidence interval (CI). For the multivariate analysis, age, sex, and all other variables related to the knowledge of VRF with P values less than or equal to .2 in the univariate analysis were included. The Ethics Committee for Clinical Research of the La Paz University Hospital approved this study. Written informed consent was obtained from all patients.
Results A total of 100 patients with stroke were enrolled. Four patients were excluded from the current analysis because of incomplete data on VRF knowledge. From the 96 patients included for analysis purposes, 54 patients (56.3%) were males with a mean age (standard deviation) of 61.6 (15.8) years (range 27-89). Sixteen of the interviewed patients (16.7%) were university graduates, whereas 50 (52.1%) had no education or had attended only primary school. Before their stroke, 38 patients (39.6%) were retired/ unemployed, 42 (43.8%) had skilled professions, and 16 (16.7%) had unskilled professions. Up to 20.8% had
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Figure 1. Prevalence and patients’ knowledge and acknowledgment of their own VRFs. Dark gray bars show diagnosed patient VRF obtained from medical reports. Light gray bars show what patients know are VRF as observed in the in-depth interviews. White bars show patients’ acknowledgment of their own VRF. *Self-reported. Stress included either a sustained long period of worries and bad eating and sleep habits or a sudden and impressive impact. Abbreviation: VRF, vascular risk factor.
suffered more than 1 stroke. Seven patients lived alone after their stroke, whereas 74 (77.1%) lived with their families, 2 (2.1) were single mothers, and 5 (5.2%) lived with some parents. One quarter (n = 24) had an mRS score greater than 1 after stroke. Nearly all patients (97.9%) had at least 1 VRF and most (90.6%) had 2 or more VRFs. Figure 1 shows the prevalence of VRF in this cohort, together with the patients’ knowledge and acknowledgment of their own VRFs. The most common VRFs were hypertension (62.5%), age 65 years or older (61.5%), dyslipidemia (51%), and cigarette smoking (51%). With regard to knowledge of VRF, when asked to name factors they knew to be related to stroke risk, 45.8% named stress, 29.2% dyslipidemia, 28.1% hypertension, 28.1% cigarette smoking, and 13.5% diabetes, whereas only 4.2% named old age. In general, the
Figure 2.
VRFs more frequently recognized by the patients as their own were stress, hypertension, dyslipidemia, cardiac disease, and cigarette smoking (Fig 1). Majority of the patients who mentioned stress as a risk factor for stroke (N = 37) referred to a sustained period of time when they were feeling worried and had bad sleeping and eating habits, while 11 patients referred to a sudden-onset situation that caused a profound impact. Three patients mentioned both types of stress. Out of the 94 patients with known VRF, only 15.6% acknowledged having all VRFs, whereas 52.1% acknowledged some of them and 32.3% failed to acknowledge any. When analyzed separately (Fig 2), we found that 41.7% of the obese patients recognized being overweight as a VRF, whereas only 33.3% of hypertensive patients acknowledged hypertension as a VRF; acknowledgment was
Knowledge and acknowledgment of each VRF in patients with any VRF. Abbreviation: VRF, vascular risk factor.
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Figure 3. Perception of VRFs by patients: chart showing what stroke-related VRF patients mention first. Abbreviation: VRF, vascular risk factor.
30.6% among dyslipidemia patients, 31% among smokers, and 19% among diabetic patients. Interestingly, cardiac disease was more frequently acknowledged as a personal VRF (55.6%) and so was leading a sedentary lifestyle (60%). When all patients were asked which VRF they thought was associated with their stroke, 32% named stress as the VRF most associated with stroke; 18% thought that VRFs were not associated with stroke; and the others thought that the VRFs least associated with stroke were hypertension, cardiac disease, dyslipidemia, cigarette smoking, diabetes, alcohol abuse, and a family history of stroke (Fig 3).
Multivariate analysis of factors associated to acknowledgment of own VRF (Table 1) showed that naming stress as a VRF was associated with a lower likelihood of recognizing at least 1 VRF as such, while living alone showed a nonsignificant trend. On the other hand, working outside the home and having 2 or more VRFs were associated with a higher probability of correctly acknowledging at least 1 VRF.
Discussion In the present study we found that most stroke survivors had a poor knowledge of stroke VRF and that they
Table 1. Uni- and multivariate analyses of factors associated with patients’ acknowledgment of their own VRFs*
Variable
Univariate analysis OR (95% CI)
P
Female sex Age ≥ 65 years mRS score > 1 after stroke Low educational level† Lives alone Works outside the home Previous stroke ≥2 VRFs Naming stress as a VRF
.610 (.260-1.435) .512 (.217-1.207) .942 (.399-2.224) .764 (.290-2.012) .443 (.179-1.092) 7.837 (.971-63.237) .211 (.438-3.352) 2.654 (1.035-6.804) .244 (.099-.600)
.256‡ .124‡ .892 .586 .074‡ .029‡ .712‡ .039‡ .002‡
Multivariate analysis OR (95% CI)
P
– –
– –
.368 (.121-1.113) 11.314 (1.277-100.232) – 3.192 (1.032-9.875) .204 (.076-.553)
.077 .029 – .044 .002
Abbreviations: CI, confidence interval; mRS, modified Rankin Scale; OR, odds ratio; VRF, vascular risk factor. *Only for patients presenting at least 1 VRF (n = 94). †Illiterate or primary education. ‡Variables included in the multivariate analysis.
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hardly acknowledged their own VRF. Several studies that focused on investigating the knowledge of stroke in the general population have highlighted a poor level of knowledge regarding stroke, its symptoms, and risk factors, even in people with high risk of stroke.2,3,6,9-11 Although one could expect that after a stroke, survivors will be better informed regarding stroke VRF in general and specifically of their own VRF, several studies and reviews have demonstrated an important gap in this knowledge.12,13 This fact is of high relevance as it could contribute to the continuance of unhealthy lifestyles after stroke and a lack of adherence to secondary stroke prevention.13 Majority of the previous studies were based on surveys and predefined questionnaires, without open-ended questions, and did not give the patients the opportunity to express their perceptions and doubts regarding stroke and its risk factors. In this sense, our study, using the methodology of social anthropological science, offers an in-depth analysis of how stroke survivors perceive and acknowledge stroke VRF and the social and cultural elements influencing this. Qualitative studies based on stroke survivors and family members could help identify barriers that hinder stroke risk knowledge, and help to design new educative strategies aimed to improve knowledge and understanding of VRFs.8 We were surprised to find that stroke survivors, on follow-up at the stroke outpatient clinic, still lacked an adequate knowledge regarding stroke and failed to correctly acknowledge their VRF, even if both they and their families had already been informed on VRF by stroke neurologists (both verbally during hospitalization and through discharge reports). This raises the question of the gap lying between what health physicians inform about and what patients really understand and retain.7 For example, although a lack of information regarding lifestyle behaviors in relation with secondary stroke prevention before hospital discharge has been reported, in-depth interviews revealed that, in fact, patients and their relatives received that information, but it was provided mainly in written format and not reinforced verbally.14 Besides, it is possible that providing information regarding stroke VRF may not be effective during hospitalization, and it has been suggested that patients and their families are most likely to be receptive to secondary prevention information once they have returned home.14 Thus, it seems of utmost importance that health professionals understand and take into account communication barriers with the patients, to ensure that patients understand and retain all health-related educational messages that are given; as with appropriate risk factor awareness patients could be more prone to modify their behavior and lifestyle.12 Some studies have highlighted the need for effective educational programs to improve knowledge and awareness after stroke. Health professionals should consider risk factor education as a tool for improving adherence and lifestyle modification.12,13,15 Even if the best way to
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provide this information is still unclear, an active involvement of both patients and carers when providing stroke-related information seems to have more effect than passive information methods on patient mood, even if not on other outcomes like knowledge of stroke.16 In our opinion, the majority of the educational programs for stroke survivors have been focused on information on stroke awareness signs and the classical stroke risk factors, neglecting other different dimensions that influence survivors’ behavior, that is, the social, cultural, economic, and health situations. This could be an explanation for the fact that objective information on health behavior and secondary prevention measures is not always understood in the same way, as it depends on membership groups, past experiences, lifestyles, subjective resistance, as well as one’s own coping mechanisms with sickness.17 All these factors need to be taken into account when counseling patients on secondary prevention of stroke. Qualitative studies as ours, showing the perceptions of stroke survivors and the barriers to the knowledge of stroke, can help in this task. We found 3 elements independently related with the acknowledgment of patients’ own risk factors: naming stress as a VRF, having 2 or more VRFs, and working outside the home. Sustained stress and emotional impacts were consistently recognized by stroke survivors both as a risk factor and as a trigger for stroke. In this cohort, most patients blamed their stroke on external factors that they believed were uncontrollable. Even if VRF and biological mechanisms were identified as harmful during the interview, they were not given priority. Similar findings have been found on other studies based on open-ended questions18,19 or on allowing for free recall of stroke risk factors.20 In fact, in the past years researchers paid more attention to the relationship between stress and stroke.21,22 However, working outside the home and having more than 2 VRFs were associated with a higher probability of acknowledging at least 1 VRF. In the first case, we observe the importance of leading and maintaining an active lifestyle before stroke. In this cohort, living alone showed a trend associated with poorer knowledge of patients’ own VRF, although no significant association could be shown, probably because of the small sample size. However, living alone is another factor that has been related with poor knowledge of stroke risk factors in other studies,19 showing the importance of socialization for stroke survivors. Thus, to summarize, different social and cultural factors affect knowledge and acknowledgment of VRF in a combined way and must be considered for an optimal secondary prevention of stroke. The relationship between the efficiency of the different methods for providing health information after a stroke and the patients’ decisions about adherence to treatment and lifestyle has been poorly studied.7 We must acknowledge the complexity of the doctor–patient relationship, understanding that a better
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communication goes beyond a change of speech and requires a change in health professionals’ attitudes. Finally, uncertainties exist regarding the possible effect of the lack of knowledge about stroke and its VRFs on patients’ compliance with secondary prevention measures. Further studies should aim to explore this issue and the consequences on future stroke risk. In conclusion, knowledge and acknowledgment of own stroke VRF in stroke survivors is poor. Stress was the risk factor that patients identified most frequently and it was associated with a poorer knowledge of their own VRF. Further studies addressing the influence of social and cultural dimensions of stroke survivors on stroke knowledge and acknowledgment of their own VRFs are needed, and the efficacy of the different educational and information methods on stroke risk and stroke prevention measures must be studied.
References 1. Feigin VL, Forouzanfar MH, Krishnamurthi R, et al. Global and regional burden of stroke during 1990-2010: findings from the Global Burden of Disease Study 2010. Lancet 2013;6736:1-11. 2. Schneider AT, Pancioli AM, Khoury JC, et al. Trends in community knowledge of the warning signs and risk factors for stroke. JAMA 2003;289:343-346. 3. Potvin L, Richard L, Edwards AC. Knowledge of cardiovascular disease risk factors among the Canadian population: relationships with indicators of socioeconomic status. CMAJ 2000;162(9 Suppl):S5-S11. 4. Johnston D, Johnston M, Pollard B, et al. Motivation is not enough: prediction of risk behavior following diagnosis of coronary heart disease from the theory of planned behavior. Heal Psychol 2004;23:533-538. 5. Kothari R, Sauerbeck L, Jaunch E, et al. Patients’ awareness of stroke signs, symptoms, and risk factors. Stroke 1997;28:1871-1875. 6. Sundseth A, Faiz KW, Rønning OM, et al. Factors related to knowledge of stroke symptoms and risk factors in a Norwegian stroke population. J Stroke Cerebrovasc Dis 2014;23:1-7. 7. Díez-Ascaso O, Martinez-Sánchez P, Fuentes B, et al. Sociocultural study on the self-perception of stroke and an analysis of doctor-patient communication. Neurologia 2011;26:81-91.
O. DIEZ-ASCASO ET AL. 8. McKevitt C, Redfern J, Mold F, et al. Qualitative studies of stroke: a systematic review. Stroke 2004;35:14991505. 9. Sug Yoon S, Heller RF, Levi C, et al. Knowledge of stroke risk factors, warning symptoms, and treatment among an Australian urban population. Stroke 2001;32:19261930. 10. Kleindorfer D, Khoury J, Broderick JP, et al. Temporal trends in public awareness of stroke: warning signs, risk factors, and treatment. Stroke 2009;40:2502-2506. 11. Jaracz K, Wiszniewska M, Czlonkowska A, et al. Knowledge about stroke among non-stroke patients. Acta Clin Croat 2000;39:281-286. 12. Slark J, Sharma P. Risk awareness in secondary stroke prevention: a review of the literature. JRSM Cardiovasc Dis 2014;3:2048004013514737. 13. Ellis C, Barley J, Grubaugh A. Poststroke knowledge and symptom awareness: a global issue for secondary stroke prevention. Cerebrovasc Dis 2013;35:572-581. 14. Lawrence M, Kerr S, Watson H, et al. An exploration of lifestyle beliefs and lifestyle behaviour following stroke: findings from a focus group study of patients and family members. BMC Fam Pract 2010;11:97. 15. Maasland L, Brouwer-Goossensen D, Den Hertog HM, et al. Health education in patients with a recent stroke or transient ischaemic attack: a comprehensive review. Int J Stroke 2011;6:67-74. 16. Forster A, Brown L, Smith J, et al. Information provision for stroke patients and their caregivers. Cochrane Database Syst Rev 2012;(11):Art.No.:CD001919. 17. Glanz K, Rimer BK, Viswanath K. Health behaviour and health education. theory, research and practice. 4th ed. San Francisco, CA: Jossey-Bass A Wiley Imprint, 2008. 18. Yoon SS, Byles J. Perceptions of stroke in the general public and patients with stroke: a qualitative study. BMJ 2002;324:1065-1068. 19. Müller-Nordhorn J, Nolte CH, Rossnagel K, et al. Knowledge about risk factors for stroke: a populationbased survey with 28 090 participants. Stroke 2006;37:946950. 20. Slark J, Bentley P, Majeed A, et al. Awareness of stroke symptomatology and cardiovascular risk factors amongst stroke survivors. J Stroke Cerebrovasc Dis 2012;21:358-362. 21. O’Donnell MJ, Denis X, Liu L, et al. Risk factors for ischaemic and intracerebral haemorrhagic stroke in 22 countries (the INTERSTROKE study): a case-control study. Lancet 2010;376:112-123. 22. Egido JA, Castillo O, Roig B, et al. Is psycho-physical stress a risk factor for stroke? A case-control study. J Neurol Neurosurg Psychiatry 2012;83:1104-1111.
Background: We aimed to study the knowledge of vascular risk factors (VRFs) among patients with stroke and the elements influencing this knowledge using analysis tools from the fields of social and health anthropology. Methods: A prospective, cross-sectional and observational study in a cohort of patients who had suffered a stroke within the prior 3-12 months. Semistructured, in-depth interviews were conducted by a social anthropologist to evaluate patients’ general knowledge of VRF and specifically of their own VRF. Results: Overall, 96 patients were included, 56.3% male, mean age 61.6 years. Nearly all patients (97.9%) had at least 1 VRF. When asked to name their VRFs, 45.8% named stress, 29.2% dyslipidemia, 28.1% hypertension, 28.1% cigarette smoking, and 13.5% diabetes. The VRFs most frequently recognized by patients as their own were stress, hypertension, dyslipidemia, cigarette smoking, and cardiac disease. Only 15.6% acknowledged all their VRFs, while 52.1% acknowledged some of them and 32.3% failed to recognize any. Naming stress as a VRF (odds ratio [OR] = .204; 95% confidence interval [CI]: .076-.553) was associated with a lower likelihood of acknowledging at least 1 VRF, whereas working outside the home (OR = 11.314; 95% CI, 1.277-100.232) and having 2 or more VRFs (OR = 3.191; 95% CI, 1.0329.875) were associated with a higher probability of correctly recognizing at least one of their own VRF. Conclusions: VRF knowledge is poor in patients with stroke. Stress was the risk factor that patients identified more frequently and it was associated with poorer knowledge of their own VRF. Key Words: Stroke—vascular risk factor—knowledge. © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved.
From the Department of Neurology and Stroke Center, La Paz University Hospital, Autonomous University of Madrid, IdiPAZ Health Research Institute, Madrid, Spain. Received July 14, 2015; accepted August 16, 2015. Address correspondence to Exuperio Díez-Tejedor, Department of Neurology and Stroke Center, La Paz University Hospital, Paseo de la Castellana 261, 28046, Madrid, Spain. E-mail: exuperio.diez@ salud.madrid.org.; Address correspondence to Blanca Fuentes, Department of Neurology and Stroke Center, La Paz University Hospital, Paseo de la Castellana 261, 28046, Madrid, Spain. E-mail: [email protected]. 1 These authors have contributed equally to the manuscript. 2 Principal investigator. 1052-3057/$ - see front matter © 2015 National Stroke Association. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2015.08.018
Cerebrovascular diseases are a leading cause of death and the first major cause of disability in adults. The death rates, disability, and associated costs entail a great burden for patients and society.1 Stroke secondary prevention is based on reducing vascular risk factors (VRFs) through changes in lifestyle habits combined with the best available medical treatment. Population-based studies have shown that patients with stroke have a poor knowledge of VRF, with only 68%-72% being able to name at least 1 established VRF.2 Moreover, population groups with the highest risk of stroke, such as the elderly or those with worse health and eating habits, are precisely those who are less aware of VRF.2,3 This unawareness of VRF, together with other personal or social factors, might be hindering secondary prevention of stroke.
Journal of Stroke and Cerebrovascular Diseases, Vol. 24, No. 12 (December), 2015: pp 2839–2844
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Patients’ knowledge and acknowledgment of their own VRF are essential to modify lifestyle. However, this alone is not enough to achieve a change in behavior even in secondary prevention, as shown in patients suffering from coronary heart disease, because the transition from motivation to action depends on different factors.4 Few studies have focused on analyzing perception, knowledge of, and acknowledgment of one’s own VRF among stroke survivors. It has been reported that up to 43%-57% of patients with stroke failed to recall at least 1 VRF in surveys conducted within the first 48-72 hours from the stroke onset.5,6 One would expect these figures to decrease several months after the stroke when, theoretically, the patient and their family members have been adequately informed by health professionals on VRF and secondary prevention measures, and they have had enough time to cope with their new life after stroke. We aimed to study the general knowledge and the acknowledgment of VRF among stroke survivors 3-12 months after the stroke, as well as the social and cultural elements influencing this knowledge.
Methods We conducted a secondary analysis of a previously published study in which the perception of the stroke event was analyzed in a cohort of stroke survivors using a Social Anthropology approach.7 In brief, the present study was designed as a prospective, cross-sectional, observational study that includes stroke survivors attending a followup visit at an outpatient stroke clinic. Main inclusion criteria were age 18 years or older, history of ischemic stroke 3-12 months prior, and modified Rankin Scale (mRS) score of 0-3. The main exclusion criteria were cerebral hemorrhage, mRS score greater than 3, aphasia, significant dysarthria, cognitive impairment, or severe motor problems that could impede an independent interview with the anthropologist. This study was based on an anthropological perspective following ethnographic techniques such as data collection through in-depth interviews (based on openended questions) and participant observation. By indepth interviews we refer to one-on-one encounters between an anthropology expert and a patient that are directed toward understanding the subjective patient’s experiences and knowledge of the stroke event: what they think might have caused it, how they feel about what has happened, and in which ways recovering from a stroke can influence their lifestyle, emotional experiences, and everyday life situations, as expressed in the patient’s own words with no time limit. Moreover, as a participant observer, the anthropologist entered the field behaving in such a way that become a nonintrusive part of the scene, analyzing the patient’s subjective perception, social relationships, and acquired roles, in relation to a particular study object; attempting thus an approximation, from the
social sciences, to the reality of human behavior.7 This methodology has been used in stroke studies showing its relevance in the identifications of needs as perceived by patients with stroke and their families as well as the barriers to best-quality care.8
Data Management The social anthropologist collected the following: (1) social data: age, sex, educational level, and employment status; (2) knowledge about stroke and VRF, as well as patients’ recognition or acknowledgment of their own VRF; and (3) patients’ subjective perception of their disease. Data regarding previously diagnosed VRF were obtained from the clinical records, including hypertension, dyslipidemia, diabetes mellitus, cigarette smoking, cardiac disease, previous stroke, family history of stroke, obesity, sedentary lifestyle, and prestroke treatments. For the descriptive analysis, we worked through the creation of categories and the analysis of quantifiable variables. Interviews were transcribed verbatim and analyzed in detail following a method of discourse analysis, obtaining categories as analytical units that were studied through triangulation of data. Quantifiable variables were weighted and we conducted a multivariate analysis including clinical data. Statistical analysis was performed using Statistical Package for Social Sciences 15.0 (SPSS, Inc., Chicago, IL) for Windows. Univariate analysis was performed using the χ2 test or Fisher’s exact test for dichotomous variables. Continuous variables were tested with Student’s t-test or Mann–Whitney’s test when normality could not be assumed. P-values less than .05 were considered significant. Logistic regression models were constructed to analyze variables associated with recognition of own VRF. Values are presented with a 95% confidence interval (CI). For the multivariate analysis, age, sex, and all other variables related to the knowledge of VRF with P values less than or equal to .2 in the univariate analysis were included. The Ethics Committee for Clinical Research of the La Paz University Hospital approved this study. Written informed consent was obtained from all patients.
Results A total of 100 patients with stroke were enrolled. Four patients were excluded from the current analysis because of incomplete data on VRF knowledge. From the 96 patients included for analysis purposes, 54 patients (56.3%) were males with a mean age (standard deviation) of 61.6 (15.8) years (range 27-89). Sixteen of the interviewed patients (16.7%) were university graduates, whereas 50 (52.1%) had no education or had attended only primary school. Before their stroke, 38 patients (39.6%) were retired/ unemployed, 42 (43.8%) had skilled professions, and 16 (16.7%) had unskilled professions. Up to 20.8% had
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Figure 1. Prevalence and patients’ knowledge and acknowledgment of their own VRFs. Dark gray bars show diagnosed patient VRF obtained from medical reports. Light gray bars show what patients know are VRF as observed in the in-depth interviews. White bars show patients’ acknowledgment of their own VRF. *Self-reported. Stress included either a sustained long period of worries and bad eating and sleep habits or a sudden and impressive impact. Abbreviation: VRF, vascular risk factor.
suffered more than 1 stroke. Seven patients lived alone after their stroke, whereas 74 (77.1%) lived with their families, 2 (2.1) were single mothers, and 5 (5.2%) lived with some parents. One quarter (n = 24) had an mRS score greater than 1 after stroke. Nearly all patients (97.9%) had at least 1 VRF and most (90.6%) had 2 or more VRFs. Figure 1 shows the prevalence of VRF in this cohort, together with the patients’ knowledge and acknowledgment of their own VRFs. The most common VRFs were hypertension (62.5%), age 65 years or older (61.5%), dyslipidemia (51%), and cigarette smoking (51%). With regard to knowledge of VRF, when asked to name factors they knew to be related to stroke risk, 45.8% named stress, 29.2% dyslipidemia, 28.1% hypertension, 28.1% cigarette smoking, and 13.5% diabetes, whereas only 4.2% named old age. In general, the
Figure 2.
VRFs more frequently recognized by the patients as their own were stress, hypertension, dyslipidemia, cardiac disease, and cigarette smoking (Fig 1). Majority of the patients who mentioned stress as a risk factor for stroke (N = 37) referred to a sustained period of time when they were feeling worried and had bad sleeping and eating habits, while 11 patients referred to a sudden-onset situation that caused a profound impact. Three patients mentioned both types of stress. Out of the 94 patients with known VRF, only 15.6% acknowledged having all VRFs, whereas 52.1% acknowledged some of them and 32.3% failed to acknowledge any. When analyzed separately (Fig 2), we found that 41.7% of the obese patients recognized being overweight as a VRF, whereas only 33.3% of hypertensive patients acknowledged hypertension as a VRF; acknowledgment was
Knowledge and acknowledgment of each VRF in patients with any VRF. Abbreviation: VRF, vascular risk factor.
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Figure 3. Perception of VRFs by patients: chart showing what stroke-related VRF patients mention first. Abbreviation: VRF, vascular risk factor.
30.6% among dyslipidemia patients, 31% among smokers, and 19% among diabetic patients. Interestingly, cardiac disease was more frequently acknowledged as a personal VRF (55.6%) and so was leading a sedentary lifestyle (60%). When all patients were asked which VRF they thought was associated with their stroke, 32% named stress as the VRF most associated with stroke; 18% thought that VRFs were not associated with stroke; and the others thought that the VRFs least associated with stroke were hypertension, cardiac disease, dyslipidemia, cigarette smoking, diabetes, alcohol abuse, and a family history of stroke (Fig 3).
Multivariate analysis of factors associated to acknowledgment of own VRF (Table 1) showed that naming stress as a VRF was associated with a lower likelihood of recognizing at least 1 VRF as such, while living alone showed a nonsignificant trend. On the other hand, working outside the home and having 2 or more VRFs were associated with a higher probability of correctly acknowledging at least 1 VRF.
Discussion In the present study we found that most stroke survivors had a poor knowledge of stroke VRF and that they
Table 1. Uni- and multivariate analyses of factors associated with patients’ acknowledgment of their own VRFs*
Variable
Univariate analysis OR (95% CI)
P
Female sex Age ≥ 65 years mRS score > 1 after stroke Low educational level† Lives alone Works outside the home Previous stroke ≥2 VRFs Naming stress as a VRF
.610 (.260-1.435) .512 (.217-1.207) .942 (.399-2.224) .764 (.290-2.012) .443 (.179-1.092) 7.837 (.971-63.237) .211 (.438-3.352) 2.654 (1.035-6.804) .244 (.099-.600)
.256‡ .124‡ .892 .586 .074‡ .029‡ .712‡ .039‡ .002‡
Multivariate analysis OR (95% CI)
P
– –
– –
.368 (.121-1.113) 11.314 (1.277-100.232) – 3.192 (1.032-9.875) .204 (.076-.553)
.077 .029 – .044 .002
Abbreviations: CI, confidence interval; mRS, modified Rankin Scale; OR, odds ratio; VRF, vascular risk factor. *Only for patients presenting at least 1 VRF (n = 94). †Illiterate or primary education. ‡Variables included in the multivariate analysis.
STROKE PATIENT’S KNOWLEDGE OF VASCULAR RISK FACTORS
hardly acknowledged their own VRF. Several studies that focused on investigating the knowledge of stroke in the general population have highlighted a poor level of knowledge regarding stroke, its symptoms, and risk factors, even in people with high risk of stroke.2,3,6,9-11 Although one could expect that after a stroke, survivors will be better informed regarding stroke VRF in general and specifically of their own VRF, several studies and reviews have demonstrated an important gap in this knowledge.12,13 This fact is of high relevance as it could contribute to the continuance of unhealthy lifestyles after stroke and a lack of adherence to secondary stroke prevention.13 Majority of the previous studies were based on surveys and predefined questionnaires, without open-ended questions, and did not give the patients the opportunity to express their perceptions and doubts regarding stroke and its risk factors. In this sense, our study, using the methodology of social anthropological science, offers an in-depth analysis of how stroke survivors perceive and acknowledge stroke VRF and the social and cultural elements influencing this. Qualitative studies based on stroke survivors and family members could help identify barriers that hinder stroke risk knowledge, and help to design new educative strategies aimed to improve knowledge and understanding of VRFs.8 We were surprised to find that stroke survivors, on follow-up at the stroke outpatient clinic, still lacked an adequate knowledge regarding stroke and failed to correctly acknowledge their VRF, even if both they and their families had already been informed on VRF by stroke neurologists (both verbally during hospitalization and through discharge reports). This raises the question of the gap lying between what health physicians inform about and what patients really understand and retain.7 For example, although a lack of information regarding lifestyle behaviors in relation with secondary stroke prevention before hospital discharge has been reported, in-depth interviews revealed that, in fact, patients and their relatives received that information, but it was provided mainly in written format and not reinforced verbally.14 Besides, it is possible that providing information regarding stroke VRF may not be effective during hospitalization, and it has been suggested that patients and their families are most likely to be receptive to secondary prevention information once they have returned home.14 Thus, it seems of utmost importance that health professionals understand and take into account communication barriers with the patients, to ensure that patients understand and retain all health-related educational messages that are given; as with appropriate risk factor awareness patients could be more prone to modify their behavior and lifestyle.12 Some studies have highlighted the need for effective educational programs to improve knowledge and awareness after stroke. Health professionals should consider risk factor education as a tool for improving adherence and lifestyle modification.12,13,15 Even if the best way to
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provide this information is still unclear, an active involvement of both patients and carers when providing stroke-related information seems to have more effect than passive information methods on patient mood, even if not on other outcomes like knowledge of stroke.16 In our opinion, the majority of the educational programs for stroke survivors have been focused on information on stroke awareness signs and the classical stroke risk factors, neglecting other different dimensions that influence survivors’ behavior, that is, the social, cultural, economic, and health situations. This could be an explanation for the fact that objective information on health behavior and secondary prevention measures is not always understood in the same way, as it depends on membership groups, past experiences, lifestyles, subjective resistance, as well as one’s own coping mechanisms with sickness.17 All these factors need to be taken into account when counseling patients on secondary prevention of stroke. Qualitative studies as ours, showing the perceptions of stroke survivors and the barriers to the knowledge of stroke, can help in this task. We found 3 elements independently related with the acknowledgment of patients’ own risk factors: naming stress as a VRF, having 2 or more VRFs, and working outside the home. Sustained stress and emotional impacts were consistently recognized by stroke survivors both as a risk factor and as a trigger for stroke. In this cohort, most patients blamed their stroke on external factors that they believed were uncontrollable. Even if VRF and biological mechanisms were identified as harmful during the interview, they were not given priority. Similar findings have been found on other studies based on open-ended questions18,19 or on allowing for free recall of stroke risk factors.20 In fact, in the past years researchers paid more attention to the relationship between stress and stroke.21,22 However, working outside the home and having more than 2 VRFs were associated with a higher probability of acknowledging at least 1 VRF. In the first case, we observe the importance of leading and maintaining an active lifestyle before stroke. In this cohort, living alone showed a trend associated with poorer knowledge of patients’ own VRF, although no significant association could be shown, probably because of the small sample size. However, living alone is another factor that has been related with poor knowledge of stroke risk factors in other studies,19 showing the importance of socialization for stroke survivors. Thus, to summarize, different social and cultural factors affect knowledge and acknowledgment of VRF in a combined way and must be considered for an optimal secondary prevention of stroke. The relationship between the efficiency of the different methods for providing health information after a stroke and the patients’ decisions about adherence to treatment and lifestyle has been poorly studied.7 We must acknowledge the complexity of the doctor–patient relationship, understanding that a better
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communication goes beyond a change of speech and requires a change in health professionals’ attitudes. Finally, uncertainties exist regarding the possible effect of the lack of knowledge about stroke and its VRFs on patients’ compliance with secondary prevention measures. Further studies should aim to explore this issue and the consequences on future stroke risk. In conclusion, knowledge and acknowledgment of own stroke VRF in stroke survivors is poor. Stress was the risk factor that patients identified most frequently and it was associated with a poorer knowledge of their own VRF. Further studies addressing the influence of social and cultural dimensions of stroke survivors on stroke knowledge and acknowledgment of their own VRFs are needed, and the efficacy of the different educational and information methods on stroke risk and stroke prevention measures must be studied.
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