Abstract
Objectives
Focus on the different therapeutic patient education (TPE) programs for stroke survivors found in the literature. Verify their content and efficacy.
Method
A literature review was conducted by searching for entries from 1966 to 2011 in the Medline and Cochrane Library databases. The references for the accepted articles were taken into consideration and the articles corresponding to the criteria inclusion but not present within the initial search were selected. The keywords used were “self care”, “self management”, “patient education” and “stroke”. Given the multiplicity of symptoms that may be addressed in TPE programs, and following expert advice, the symptoms were grouped after expanding the bibliographic search using the following, additional keywords: “dysphagia”; “swallowing disorder”; “urinary incontinence”; “caregiver”; “fall prevention”; “falling”; “injury”; “shoulder pain”; “physical activity”; “exercise”; “aphasia” and “cognitive impairment”.
Results
We found 30 article abstracts. In the end, we only accepted seven articles on general TPE programs that were well structured and detailed enough. The TPE programs found in the literature were often of questionable methodological quality. The multiplicity of symptoms led to very general TPE programs that covered all possible stroke after-effects. The purpose of these programs was to reduce stress and anxiety, to improve quality of life and to alleviate psychosocial after-effects. A change in caregiver and patient behavior was observed at times. We expanded the bibliographic search to include scientific arguments that could help implement TPE programs for more specific targets.
Conclusion
TPE programs for stroke survivors could be improved by standardizing and assessing programs that focus on a specific problem caused by the various possible after-effects of strokes. In order to promote education for stroke survivors, specific training for health care professionals and appropriate funding are necessary.
Résumé
Objectifs
Mise au point sur les différents programmes d’éducation thérapeutique du patient (ETP) post-AVC retrouvés dans la littérature. En vérifier le contenu et leur efficacité.
Méthode
Une revue de la littérature a été réalisée par interrogation des bases de données Medline, et Cochrane Library pour les années 1966 à 2011. Les références des articles retenus ont été prises en compte et les articles correspondant aux critères d’inclusion mais non présents dans la recherche initiale ont été sélectionnés. Les mots clés utilisés étaient « selfcare , self management, patient education , stroke » . Compte tenu de la multiplicité des symptômes pouvant faire l’objet d’ETP, ils ont été regroupés sur avis d’expert en élargissant la recherche bibliographique à l’aide des mots-clés complémentaires suivants : « dysphagia, swallowing disorder, urinary incontinence, caregiver, prevent falls, falling, injury, shoulder pain, physical activity, exercice, aphasia, cognitive impairment ».
Résultats
Nous avons recensé 30 résumés d’articles. Nous n’avons finalement retenu que sept articles portant sur des programmes d’ETP généraux suffisamment bien structurés et détaillés. Ces programmes d’ETP étaient souvent de qualité méthodologique discutable. La multiplicité des symptômes a conduit à la réalisation de programmes d’ETP très généraux sur l’ensemble des séquelles possibles. L’éducation avait pour but de diminuer le stress et l’anxiété, d’améliorer la qualité de vie et le retentissement psychosocial. Un changement de comportement des soignants et des soignés a parfois été constaté. Nous avons étendu la recherche bibliographique à la recherche d’arguments scientifiques pouvant aider à la mise en place de programmes d’ETP sur des cibles plus spécifiques.
Conclusion
L’ETP des patients post-AVC pourrait être améliorée par la standardisation et l’évaluation de programmes spécifiques à chaque problématique soulevée par les différentes séquelles possibles. Afin de promouvoir la prise en charge éducative des patients post-AVC, une formation spécifique des professionnels de santé, ainsi que des financements adaptés sont nécessaires.
1
English version
1.1
Introduction
Stroke is a major cause of death and dependence. It is the third most frequent cause of death after cancer and cardiovascular disease in industrialized countries; a third of stroke survivors have significant, permanent neurological after-effects, which in turn are the number one cause of acquired disability. In France, there is an estimated 150,000 new stroke cases each year. The incidence is approximately 145/100,000 inhabitants per year; this incidence increases exponentially with age from 238/100,000 in people aged 45 to 84 to 1,300/100,000 in people aged 84 and over . Each clinical picture entails multiple deficiencies that interact with each other and that have their own complications. Some deficits can be life-threatening while others can compromise the functional prognosis.
The WHO Europe defined therapeutic patient education (TPE), the objective of which is to provide patients with enough knowledge to achieve balance in their lives and optimal control of their illness through selfcare skills and rehabilitation. It is important to reiterate that these skills are not adaptations to treatment but rather psychosocial behaviors that are developed and/or acquired in daily life. TPE is an ongoing process that is an integral part of medical treatment. TPE is comprised of raising awareness, providing information, teaching and giving psychosocial support, and relating all of this to the disease and to treatment. Training should also enable patients and patient families to work better with caregivers. Subsequently, TPE helps patients with chronic disease better understand their illness and treatment, enabling them to take an active role in their own health.
To establish the educational diagnosis, a caregiver gathers information from the patient. This information is used to establish the objectives of the educational program. This phase helps determine patient needs and expectations. Some of the objectives of a TPE are to reduce morbidity and/or the occurrence of certain complications as well as to lessen the personal and/or social repercussions of certain symptoms or deficiencies .
TPE itself is a goal in physical medicine and rehabilitation (PMR) and it is generally part of the missions of follow-up care and rehabilitation facilities (FRF) (French decree of 17 April 2008). Current stroke survivor management sends patients home earlier and earlier, yet longer management is what is needed because the recuperation process is long. Throughout recuperation, patients can be their own therapists, but need a guide to maintain a sufficient level of rehabilitation work. The programs available in rehabilitation structures are effective, but they should be extended to cover patients long-term within the scope of a TPE program.
The long-term illness guide for strokes issued by the Haute Autorité de santé (HAS, French health authority) reiterates that TPE is essential to the activity of professional caregivers. It is specifically stipulated that TPE should ensure that stroke survivors and their relatives or caregivers understand the illness and master the technical actions required for stroke management.
TPE is comprised of:
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providing information on available treatments and the potential adverse effects of the treatment received by the patient, on preventing certain complications (pain, falls, urinary incontinence, swallowing disorders or communication problems), and on scheduling routine testing or screening for any complications that arise as well as on the results of these tests and screens.
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provide training on how do become independent through technical aids and orthotics, positioning, transfers, and even rehabilitation measures to be performed by the patient or the patient’s family and friends. The therapeutic patient education process should be ongoing and enable the professionals regularly in contact with patients and their family and friends, and especially the attending physician and nurses, to screen for regression in acquired skills and patient and/or caregiver difficulties.
Some of the self-care skills are crucial to stroke survivor care, such as implementing lifestyle changes (e.g., physical exercise, aids for transfers and positioning, adapted food textures and feeding postures, and fall prevention measures) and involving family and friends in managing the illness and treatments (e.g., how to act in the event of communication or behavioral difficulties). The acquisition of adaptation skills by patients and caregivers is also key and can be complicated given the frequent psychoemotional and cognitive after-effects of strokes.
Against this background, the French Physical and Rehabilitation Medicine Society (Sofmer) established a working group to devise methodological guides for implementing TPE programs based on analyses of practices and the literature. These guides are available in French on the Sofmer website ( www.sofmer.com ). This working group only addressed the after-effects of strokes. Secondary prevention and cardiovascular risk factor control, which are essential for stroke survivors, will be discussed in a specific working group.
1.2
Materials and methods
The working group was made up of representatives of the Sofmer, the French Neurovascular Pathology Society (SFNV), the France AVC French Stroke Association and professionals involved in these issues: nurses, occupational therapists, physical therapists, and speech therapists (Appendix 1: composition of the working group and the peer review panel).
A literature review was conducted by searching the Medline and Cochrane Library databases for entries from 1966 to 2011. Only articles on stroke survivors in the discharge-to-home phase were used. The key words used were “self care”, “self management”, “patient education” and “stroke”. The scientific committee independently performed an initial selection based on abstracts in order to choose articles addressing Therapeutic Patient Education for stroke survivors. The articles were assessed by a pair of readers and validated by the working group to enable recommendations to be made based on the scientific plan and to be adapted to current practices. For articles to be accepted, the following needed to be mentioned: the specific TPE objective, the TPE method (form and content), the educational session objectives, and the theoretical or practical skills to be acquired. They also needed to mention an assessment of patient knowledge and the patients’ ability to adapt.
Given the limited number of articles found, we decided to expand the bibliographic search using the following additional keywords “dysphagia”, “swallowing disorder”, “urinary incontinence”, “caregiver”, “fall prevention”, “falling”, “injury”, “shoulder pain”, “physical activity”, “exercise”, “aphasia” and “cognitive impairment”.
1.3
Results
1.3.1
Therapeutic patient education programs for stroke survivors
Research published in the area of TPE for stroke survivors pertains to general programs that focus on risk factors and general stroke after-effects ( Table 1 ). The targets were caregivers, partners or the patients themselves. The subjects discussed were the main deficiencies and disabilities resulting from stroke and their psychosocial consequences. Pre- and post-education assessments were often performed with non-validated “home” scales and visual analog scales (VAS) as well as validated scales, such as the EuroQol Visual Analog Scale for quality of life (validated for stroke survivors), the Hospital Anxiety and Depression scale (validated for stroke survivors), the Stroke Care Information Test (validated) and the Frenchay Activities Index.
| Article | Study type | Target | Subject discussed | Description of the skills to be acquired | Assessment of acquisitions | Educational diagnosis | Intervention | Results |
|---|---|---|---|---|---|---|---|---|
| Larson et al. 2005 | RCT | Spouses | General information, psychosocial after-effects | No | No | No | 20 min class then 6 discussions over 6 months | Negative |
| Smith et al. 2004 | RCT | Patients and Those close to patients | General recuperation and consequences | No | Home questionnaire appended | Home questionnaire | Meeting every two weeks with the multidisciplinary team, the Stroke Recovery Programme manual | No improvement in knowledge but in anxiety |
| Evans et al. 1988 | RCT | Caregivers | General, adjustment and social consequences | No | Stroke Care Information Test (SCIT) | NO | 3 groups: G1 Control, G2 2 sessions for the patient, G3 same + additional social orientation sessions for the spouse. Interviews, video | Improvement in Family Assessment Device (FAD) and SCIT Better social behavior only if practical intervention |
| Kalra et al. 2004 | RCT | Care givers (300 CVA) | General | Home questionnaire | During interview | 3 to 4 theoretical and practical sessions for 30 to 45 minutes before discharge then continued at home | Decreased anxiety, depression and treatment-seeking during the first year and improved QoL. FAI, EuroQol, HH | |
| Hoffmann et al. 2007 | RCT | Patients | General | No | Knowledge of Stroke Questionnaire Self-Efficacy to Perform Self-Management Behaviours Scale, HH, COOP | Questioning about needs for the “treated” group | Written information distribution, targeted for the treated group | Better satisfaction with Information received in the “treated” group. No difference in knowledge. More anxiety for the “treated” group. |
| Mant et al. 2000 | RCT | Patients Those close to patients | General, unspecified | No | Home questionnaire on knowledge, Frenchay activites index, Barthel, London Handicap Scale, HH, SF36. | No | Brochures and involvement of a “family-support organizer” | Improved stress, quality of life and social participation for those close to patient, no difference for the patients |
| Rodgers et al. 1999 | RCT | Patients Those close to patients | General, well-specified | SF36, CVA Knowledge Home questionnaire, HH, Disability | Theoretical courses | Improvement in knowledge, no effect on quality of life, HH. | ||
The practical modalities for implementing these programs are highly variable. Most often, they are set-up during the initial post-stroke hospitalization period. The education modalities may include theoretical training , theoretical and practical training , discussions and debates . The duration and frequency of the sessions are also highly variable: for example, there can be three to four 30- to 45-minute sessions, six sessions for total of nine hours or one session every two weeks .
These studies tend to demonstrate that a TPE program can diminish anxiety and depression as well as improve quality of life and coping, and sometimes even improve resource utilization and subsequently reduce the economic impact (sometimes without even improving the level of knowledge) .
It seems that simply providing information booklets is not enough to alleviate anxiety, and may even cause it; implementing practical training seems to be necessary . The Kalra study is also in favor of pursuing TPE programs at home through activities of daily living .
1.3.2
Evidence for pursuing a therapeutic patient education program at home for cognitive impairment and behavioral disturbances
Cognitive functions are distinct areas: memory, language, movement, visual spatial functions, perception, executive functions and attention functions. Stroke survivor cognitive impairment and behavioral disturbances (aphasia and communication difficulties will be discussed in a separate section) represent a source of social disability and psychological suffering for patients and their family and friends. They can form a significant part of the caregiver workload and lead to institutionalization . They are the result of brain lesions, patient reactions to their deficits and the attitudes of the people around them. Inappropriate caregiver reactions can come from their ignorance of the existence of these disturbances and their consequences .
There are few studies of cognitive impairment in stroke survivors and TPE. However, we have some items that can serve as a foundation for building an effective educational program in this area.
A randomized, multicenter, single-blind study comparing two programs demonstrated the benefit of simply providing information and recommendations on cognitive impairment in reducing the “tension” felt by a stroke survivor’s family and friends . Another randomized study demonstrated that information provided by telephone eight weeks after a stroke on themes such as caregiver optimism, daily challenges, level of depression, daily changes and current perceptions of the situation increased the level of caregiver satisfaction and patient quality of life, limited the appearance of depression and increased the possibility for change among caregivers .
A comparison of three program types (habitual treatment, simple information and education) demonstrated the benefit of an education program that supports caregivers. This approach positively influenced family function and patient behavior . A randomized study demonstrated the benefits of individual and group approaches in an education program intended for stroke survivor caregivers .
Finally, several studies on programs conducted among caregivers of dementia patients that specifically target patients with behavioral disturbances can also provide support for the development of TPE programs for stroke survivors .
It is recommended to first provide information on the consequences of stroke: difficulties remembering and learning, attention disorders, alterations in executive functions, and emotional effects. Next, recommendations should be put into practice to develop coping mechanisms that help stroke survivors and caregivers learn how to resolve problems that arise in the home.
1.3.3
Evidence for pursuing a therapeutic patient education program for communication difficulties and aphasia
Aphasia may involve an inability to understand, to speak, or both. It represents a multimodal disorder, which may include disturbances in oral comprehension, written comprehension, oral expression and/or written expression. Obstacles to communication result from language deficits as well as the inability for the communicator to express the skill to be conveyed to the aphasic person. Aphasia can cause considerable personal, familial and social disturbances for aphasic individuals and those closest to them.
Therefore, the main objective is to help aphasic people, regardless of the severity of the aphasia, to regain the ability to communicate in their social environment and to maintain, or at least restore, quality of life . North and Mc Clenahan observed that the distress of caregivers of chronic aphasic patients did not seem to be related to the aphasia itself, the mood or the functional dependence of the aphasic patient, but rather to the caregivers themselves: from their ability to effectively manage stress and/or their strategies for handling difficult situations. Michallet et al. also concluded that it was beneficial to promote social reintegration for severely aphasic individuals. To promote such reintegration, it is important to let the individuals and their family and friends achieve the status of partners in the rehabilitation process. To do this, it is essential to better understand the consequences of severe aphasia and disabling communication situations. Aphasia prevents effective, harmonious interaction with others, which progressively limits activity and leads to social withdrawal. Problems during communication situations can be attributed to language difficulties or an inappropriate response by family and friends due to a poor understanding of the problem . These difficulties can prevent patients from expressing their needs and aggravate certain personality traits (anxiety, poor self-esteem, solitude and, especially, irritability). They can also quickly exhaust caregivers.
Visser-Meilly conducted a literature review on assistance programs for family caregivers. This study was inconclusive. It seems that individual caregiver support is more effective than simply providing stroke information. Evans et al. emphasized the benefit of therapeutic education for patients and caregivers along with long-term support to achieve more caregiver involvement and provide better results. Since the 70s, aphasia management has evolved from a semiological, cognitive approach to a pragmatic, functional approach. Subsequently, there is currently interest in contextualized use and transferring what is learned to daily life. To this end, TPE fully incorporates effective communication. The integration of the systemic model into the medical model involves therapists in a system where everyone (liaisons, aphasic people, caregivers) tries to find concrete solutions to problematic situations .
1.3.4
Evidence for pursuing a therapeutic patient education program for swallowing disorders
The frequency of swallowing disorders depends on screening resources, clinical examinations or video radioscopy . Subsequently, 30% of victims of a single (one-sided) stroke develop clinical swallowing disorders in the acute phase, but this figure rises to 60 or even 80% after video radioscopic exploration . In the majority of cases, these disorders are secondary to delayed pharyngeal swallowing and can cause aspiration pneumonia in 25% of cases. Traditionally, regaining normal swallowing occurs during the first three months since the patient is often still in a hospital structure. Nevertheless, studies have shown that these difficulties can persist for longer than six months and be a determining factor in preparing to discharge a patient to home .
There have been no publications on TPE and swallowing disorders in stroke survivors during the period when they return home, as there have been for such patients during the period in which they receive follow-up care in rehabilitation facilities. Given the frequency of these disorders, their possible long-term persistence and the fact that treatment is based on adapting food textures and feeding postures at home, it seems crucial to propose TPE programs on swallowing disorders to patients and their family and friends.
1.3.5
Evidence for pursuing a therapeutic patient education program for handling and positioning
The frameworks for handling and positioning best practice for hemiplegic individuals exist and are widely distributed through various national guidelines (e.g., the HAS French health authority) . There are many teaching documents with such information.
Various studies targeting caregiver personnel demonstrated that several theoretical and practical training sessions on how to position and transfer hemiplegic individuals were beneficial . After the training, personnel had improved their theoretical knowledge (verified through a questionnaire), patients were often better positioned (verified in practice using a specific scale) and the transfer assistance was often of better quality. However, these studies did not succeed in demonstrating a decrease in the frequency of upper limb pain complications, and the impact on falls was not assessed.
We only found one recent publication describing the implementation of a measure to educate patients and their caregivers on positioning and transfers . Patients and/or their caregiver received theoretical and practical education (by the trained caregiver personnel) with educational support (poster, booklet). The program involved two to three sessions before the first discharge to home. Unfortunately, the program was not structured according to the HAS guidelines (no formal educational diagnosis or assessment of the measure or educational monitoring).
1.3.6
Evidence for pursuing a therapeutic patient education program for urinary and bowel incontinence
Urinary incontinence is frequent after strokes. Urinary incontinence is widespread in patients discharged from hospitals or rehabilitation centers. Hence, 17% of people living at home after a stroke have episodes of urinary incontinence at least once a day, and this has a significant impact on quality of life . However, urinary incontinence is not the only symptom to have an impact on quality of life: nocturia, pollakuria, urinary urgency and dysuria can also affect quality of life . After three years, urinary incontinence is the factor with the most significant effects on quality of life, along with cognitive impairment . The quality of life of partners is also affected . Bowel and urinary incontinence are often related. Bowel incontinence can frequently appear later on: in the Harari study, 63% of patients who were incontinent at one year post-stroke had been continent three months post-stroke . This is a significant stress factor for those close to the patients .
Studies on urinary incontinence treatment are rare and only backed up by a modest level of evidence, as emphasized in a recent Cochrane review . However, it seems that patient-targeted intervention programs can have a beneficial effect .
The Brittain et al. study was the subject of a report, but the report has not been published. It was on 232 patients, 152 of whom received advice from a nurse specially trained in treating urinary incontinence in the hospital setting and then at home. This nurse gave advice and trained patients on treating urinary incontinence. The patients in the control group were treated by their attending physician only. The comparison favored the intervention group, but the results were not significant.
The Wikander et al. study did not assess a therapeutic patient education program, strictly speaking. It was on 34 patients and compared traditional rehabilitation (13 patients) with targeted rehabilitation using the results of the Functional Independence Measurement scale (FIM) (21 patients). The benefits were greater for the targeted group: 20/21 patients were continent when they left the center versus 10/13 for the control group, P > 0.01.
A study on nurse-provided TPE for constipation and bowel incontinence in stroke survivors demonstrated a clear, long-term effect on diet, fluid intake and laxative prescription by the attending physician, as well as benefits on the constipation after six months .
Finally, physical and occupational therapists in centers only rarely identified urinary incontinence as a treatment objective, even though they play a role in managing this problem by providing bladder sphincter physical therapy and by working on transfers during activities of daily living, by helping patients get dressed and undressed, by offering technical aids and by teaching patients how to use such aids .
1.3.7
Evidence for pursuing a therapeutic patient education program for fall prevention
Falls are the most frequent complication in stroke survivors . Hemiplegics are prone to multiple falls and approximately 73% of them fall within the first 6 months post-stroke. There are many difficulties secondary to strokes that can cause balance disturbances, and they are often related . The psychological consequences of falls in stroke victims are more severe and lead to a heightened risk of losing social contacts . Caregivers for patients prone to falls are more stressed and work harder to limit social interactions for patients, thinking that they are protecting them . The consequences of hip fractures are more severe in hemiplegics than in the general population .
Stroke victim falls are often related to postural and gait problems . Numerous studies demonstrated an improvement in postural and gait capacity following retraining programs given long after strokes, but retraining programs that use fall reduction as an endpoint are few and far between. There are fall prevention strategies used for the elderly that can be applied to stroke survivors and are the subject of recommendations .
There has never been any specific study found on fall-prevention TPE programs. Fall-prevention education requires the integration of all elements of prevention assistance into the context of daily living for an individual, with consideration for the individual’s expectations, capacity to learn and ability to provide self-care. Although the first stage of the education process can take place in a hospital setting, it seems crucial for the education process to continue with therapists outside the hospital setting. In a systemic approach to the individual, TPE should take into consideration fall risk fears and beliefs of patients and those close to them .
1.3.8
Evidence for pursuing a therapeutic patient education program for regular physical activity (preventing fatigue, secondary prevention)
For stroke victims, the Stroke Council of the American Heart Association made recommendations in 2003 to engage in moderate intensity physical activity for at least 30 to 45 minutes a day, three days a week . The Haute Autorité de santé recommends not only monitoring stroke risk factors but also engaging in regular physical activity for at least 30 minutes every day, and to adapt this activity to the capabilities of each patient.
It seems to be useful to promote physical activity as early as possible after a stroke to prevent the patient from entering the vicious cycle of deconditioning, to prevent another stroke, to prevent another vascular complication and to prevent other risk factors from occurring on the one hand and to promote social reintegration and improve quality of life on the other hand . However, in the literature, there are few studies that demonstrate the effect of promoting physical activity in stroke victims and the practices are not always up to the level of expectations. A recent study demonstrated that 76% of stroke victims that had been informed of the benefits of engaging in physical activity stated by telephone that they engage in regular physical activity, versus 38% of uninformed patients . However, in the Boysen study, where regular advisory and encouragement sessions were given (six individualized sessions over 24 months) with telephone call backs between sessions to increase physical activity in stroke survivors, the level of physical activity reported by the subjects was the same for the group taking part in the program as it was for the control group . Another experiment suggested a therapeutic patient education program in combination with an exercise-retraining program that aimed to establish regular physical activity on a long-term basis after retraining . An assessment of the quantity of long-term physical activity after this program was performed using a semi-open questionnaire and outpatient accelerometer step counter data. The assessment did not demonstrate that physical activity had increased. However, the TPE program was not described in detail. Incorporating family and friends of stroke survivors into the TPE program improved patient adhesion to the program .
1.4
Discussion
The different articles found in the literature enabled us to reveal certain points of discussion for TPE programs for stroke survivors.
1.4.1
Therapeutic patient education target
In studies on TPE programs for stroke survivors, the target is very often the partner only or sometimes the partner and the patient . More rarely, the target is the patients themselves . Even though this does not call into question the fact that those close to the patient are also very affected by the after-effects of stroke and play a key role in management, there are questions raised about the fact that most often, patients are not the primary targets of such programs. The objective of TPE is to train patients so that they can acquire the knowledge they need. This is also one of the treatment objectives in PRM structures. This low number of studies that focus on the patients themselves may lead people to believe that stroke survivors often cannot be educated, so someone close to them is the primary target. In particular, patients with cognitive impairment, behavioral disturbances or communication problems are often excluded from patient-targeted studies and we are not always certain of their representation in partner-targeted studies. One of the explanations may be in the difficulties patients have in adhering to such programs, as well as in the methodological difficulties in assessing them.
1.4.2
Programs
Even though the proposed programs are very different, it is now established that simple passive information is less effective than education programs where the patients and their relatives are active in patient management .
The most appropriate moment to implement a TPE for stroke victims has yet to be determined. The majority of the studies that we saw focused on the period right after stroke occurrence. Most often, the program is implemented before discharge from the hospital , about one month after discharge or 6 months to three years after. In addition to this early TPE that complements and finalizes PRM treatment objectives by teaching patients and their relatives how to safely manage the after-effects of stroke, it seems to us to be beneficial to have TPE programs that are started later within the scope of long-term management of stroke victims, who can survive for many years with more or less progressive after-effects. Likewise, patient adhesion to such programs may change over time, and starting a TPE after several years can absolutely be justified.
Furthermore, the duration of a program can vary and we have no information on the utility of longer programs. Yet, longer-term TPE programs may be highly beneficial, since patients would become key players in their own rehabilitation and long-term treatment.
Programs that demonstrated their benefit were often general stroke programs. We only found a few studies with appropriate methodology that combine an objective of providing education on managing a specific deficiency or change in function, such as walking with fall prevention and encouraging physical activity, urinary incontinence and bowel incontinence.
One of the specific difficulties in the area of rehabilitation seems to that distinguishing between self-rehabilitation and TPE is often difficult, and the two can be confused. Self-rehabilitation implies prior education and regular monitoring to be effective. Therefore, it seems that a large number of self-rehabilitation programs come from TPE.
1.4.3
Therapeutic patient education assessment
In the studies mentioned, TPE for stroke survivors has an overall positive effect on improving knowledge, satisfaction and mood, as in other chronic diseases. One of the methodological difficulties revealed by the Cochrane review is the absence of a general stroke knowledge questionnaire, since, as we already mentioned, the different studies used “home” questionnaires. Finally, there is still no evidence of the impact of these programs on activity limitation and social participation, which remain areas to be explored in the post-stroke TPE field.
1.5
Conclusion
The various recommendations stipulate that TPE should be an integral part of treatment for stroke survivors. These TPE programs should be adapted to patients, their symptoms and their cognitive status, as well as to caregivers, who are particularly involved in managing the after-effects of stroke survivors and the maintenance at home. Simply providing information booklets is probably not enough to alleviate anxiety, and may even cause it; implementing practical training with professional support seems to be necessary. Additional studies are necessary to better specify the content of educational programs, whether alone or in combination with other therapies, as well as their medico-economic impact. It seems especially necessary to develop tools to help assess the education of stroke survivors.
Disclosure of interest
The authors declare that they have no conflicts of interest concerning this article.
2
Version française
2.1
Introduction
L’accident vasculaire cérébral (AVC) est une cause majeure de décès et de dépendance. C’est la troisième cause de décès après les cancers et les affections cardiovasculaires dans les pays industrialisés ; un tiers des survivants gardent des séquelles neurologiques majeures ce qui en fait la première cause de handicap acquis. En France, on estime à 150 000 le nombre de nouveaux cas par an ; l’incidence se situe aux alentours de 145/100 000 habitants par an et augmente de façon exponentielle avec l’âge pour passer de 238/100 000 entre 45 et 84 ans à 1300/100 000 après 84 ans . Chaque tableau clinique réalisé associe de multiples déficiences qui interagissent entre elles, ont leurs propres complications dont certaines risquent d’engager le pronostic vital et d’autres de compromettre le pronostic fonctionnel.
L’OMS Europe a défini l’éducation thérapeutique du patient (ETP), dont l’objectif est de former le malade pour qu’il acquiert un savoir-faire adéquat, afin d’arriver à un équilibre entre sa vie et le contrôle optimal de sa maladie en acquérant des compétences d’auto-soin et adaptation. Il est important de rappeler que ces compétences ne sont pas des adaptations aux soins, mais des comportements psychosociaux développés et/ou acquis dans la vie quotidienne.
L’ETP est un processus continu qui fait partie intégrante des soins médicaux. L’ETP comprend la sensibilisation, l’information, l’apprentissage, l’accompagnement psychosocial, tous liés à la maladie et au traitement. La formation doit aussi permettre au malade et à sa famille de mieux collaborer avec les soignants. Ainsi, l’ETP des patients contribue pour les malades chroniques à une meilleure connaissance de leur pathologie et de sa prise en charge, les faisant ainsi devenir acteur de leur propre santé.
Le diagnostic éducatif, qui précède la phase d’éducation doit être une coconstruction soignant/patient des objectifs du programme. Il permet de cerner les besoins et attentes du patient. La diminution de la morbidité et/ou une réduction de la survenue de certaines complications, l’atténuation du retentissement personnel et/ou social de certains symptômes ou déficiences font partie des objectifs de l’ETP .
L’ETP est un objectif à part entière de la prise en charge en médecine physique et de réadaptation (MPR) et est inscrite plus généralement dans les missions des services de soins de suite et réadaptation (SSR) (décret du 17 avril 2008). La prise en charge actuelle des patients post-AVC se fait avec un retour de plus en plus rapide au domicile alors qu’il y a nécessité d’une prise en charge prolongée car le processus de récupération est long. Sur la longueur de récupération, le patient peut alors être son propre thérapeute mais avec un guide nécessaire pour maintenir une quantité de travail rééducatif suffisant. Les programmes proposés en structure de rééducation sont efficaces, mais ils doivent trouver leur prolongement au long cour dans le cadre d’une ETP.
Le guide affection longue durée de la HAS concernant l’AVC rappelle que l’ETP constitue une dimension essentielle de l’activité des professionnels soignants. En particulier, il est précisé que l’ETP doit veiller à la bonne compréhension du patient ayant un AVC, de son entourage ou l’aidant : intelligibilité de sa maladie, maîtrise des gestes techniques.
Elle comporte :
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une information, qui porte sur les thérapeutiques disponibles, les effets indésirables possibles du traitement reçu par le patient, la prévention de certaines complications (complications douloureuses, chutes, troubles urinaires ou de déglutition, trouble de la communication), la planification des examens de routine ou de dépistage de complications éventuelles et leurs résultats ;
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un apprentissage comportant tout ce qui concerne l’autonomie : utilisation des aides techniques et orthèses, positionnements, transferts, voire gestes de rééducation pratiqués par le patient ou son entourage.
Le processus d’éducation thérapeutique doit être continu et permettre aux professionnels régulièrement en contact avec le patient et son entourage, notamment le médecin traitant et l’infirmier, de dépister la régression des acquis et les difficultés chez le patient et/ou l’aidant.
Parmi les compétences d’auto-soins, certaines sont primordiales dans la prise en charge des patients post-AVC comme la mise en œuvre de modification du mode de vie (exercice physique, installation manutention, adaptation des textures alimentaires et des postures, prévention des chutes…), l’implication de l’entourage dans la gestion de la maladie et des traitements (par exemple comment se comporter en cas de troubles de communication ou du comportement). L’acquisition de compétences d’adaptation par le patient et les aidants est également primordiale et peut être difficile compte tenu du retentissement psychoaffectif et cognitif fréquent.
Dans ce cadre, la Société française de médecine physique et de réadaptation (Sofmer) a mis en place un groupe de travail pour élaborer des guides méthodologiques pour la mise en place de programme d’ETP en s’appuyant sur l’analyse des pratiques et de la littérature. Ces guides sont disponibles sur le site Internet de la Sofmer ( www.sofmer.com ). Ce groupe de travail ne s’est intéressé qu’aux séquelles post-AVC. La prévention secondaire et le contrôle des facteurs de risque cardiovasculaire, essentiels pour ce type de patients, seront traités par un groupe de travail spécifique.
2.2
Matériel et méthodes
Le groupe de travail était constitué de représentants de la Sofmer, de la Société française de pathologie neurovasculaire (SFNV), de l’association France AVC et de professionnels concernés par ces questions : infirmières, ergothérapeutes, kinésithérapeutes, orthophonistes ( Annexe A , composition du groupe de travail et du groupe de relecture).
Une revue de la littérature a été réalisée par interrogation des bases de données Medline, et Cochrane Library pour les années 1966 à 2011. Seuls les articles concernant les patients post-AVC à la phase du retour au domicile ont été retenus. Les mots clés utilisés étaient « self-care, self-management, patient education, stroke » . Une première sélection d’articles sur résumés a été réalisée de façon indépendante par le comité scientifique afin de retenir les articles traitant de l’éducation thérapeutique du patient chez les sujets ayant un AVC. Les articles ont été évalués par un binôme de lecteurs avec une validation par le groupe de travail afin de permettre des recommandations fondées sur le plan scientifique et adaptées à la pratique courante. Pour que les articles soient retenus, il fallait que l’objectif précis de l’ETP soit mis en évidence, la méthode d’éducation thérapeutique développée (fond et forme), l’objectif des séances d’éducation précisé ainsi que les compétences théoriques ou pratiques à acquérir et l’évaluation des connaissances du patient et de sa capacité à s’adapter.
Compte tenu du faible nombre d’articles trouvés, nous avons décidé d’élargir la recherche bibliographique à l’aide des mots-clés complémentaires suivants : « dysphagia, swallowing disorder, urinary incontinence, caregiver, Prevent falls, falling, injury, shoulder pain, physical activity, exercise, aphasia, cognitive impairment ».
2.3
Résultats
2.3.1
Programmes d’éducation thérapeutique du patient post-AVC
Les travaux publiés dans le domaine de l’ETP post-AVC concernent des programmes généraux sur les facteurs de risque et les conséquences globales de l’AVC ( Tableau 1 ). Les cibles sont les aidants, le conjoint et le patient lui-même. Les sujets traités sont les principales déficiences et incapacités et leur retentissement psychosocial. Les évaluations pré- et postéducation sont souvent réalisées avec des échelles « maison » non validées, des échelles visuelles analogiques (EVA), mais également des échelles validées comme : l’Échelle Visuelle Analogique de l’EuroQol pour la qualité de vie (validée en post-AVC), l’Hospital Anxiety Depression pour l’anxiété dépression (validée en post-AVC), Stroke Care Information Test (validé) et Frenchay Activities Index.
| Article | Type d’étude | Cible | Sujet abordé | Description des compétences à acquérir | Évaluation des acquisitions | Diagnostic éducatif | Intervention | Résultats |
|---|---|---|---|---|---|---|---|---|
| Larson et al. 2005 | ECR | Épouses | Informations générales, retentissement psycho-social | Non | Non | Non | Cours de 20 min puis discussions 6 fois en 6 mois | Négatif |
| Smith et al. 2004 | ECR | Patients et proches | Global, récupération et conséquences | Non | Questionnaire maison en annexe | Questionnaire maison en pré intervention | Réunion toutes les 2 semaines avec équipe multidisciplinaire, le manuel Stroke Recovery Programme | N’améliore pas les connaissances mais l’anxiété |
| Evans et al. 1988 | ECR | Care givers | Global, ajustement et retentissement social | Non | Stroke Care Information Test (SCIT) | Non | 3 groupes : G1 Témoin, G2 2 séances pour le patient, G3 idem + plus séances supplémentaires pratiques pour l’épouse à orientation sociale. Entretiens, vidéo | Amélioration de Family Assessment Device (FAD) et SCIT Comportement social mieux uniquement si intervention pratique |
| Kalra et al. 2004 | ECR | Care givers (300 AVC) | Global | Questionnaire maison | À l’entretien | 3 à 4 sessions de 30 à 45 min théoriques et pratiques avant la sortie plus suivi à domicile | Diminution anxiété, dépression et le recours aux soins pendant la première année et améliore la QoL. FAI, EuroQol, HAD | |
| Hoffmann et al. 2007 | ECR | Patient | Global | Non | Knowledge of Stroke Questionnaire Self-Efficacy to Perform Self-Management Behaviours Scale, HAD, COOP | Interrogation des besoins pour le groupe « traité » | Distribution d’information, écrite, ciblée pour le groupe traité | Meilleur satisfaction quant aux informations recues dans le groupe « traité ». Pas de différence pour les connaissances. Plus d’anxiété pour le groupe « traité » |
| Mant et al. 2000 | ECR | Patientsproches | Global, non précisé | Non | Questionnaire maison sur connaissances, Frenchay activities index, Barthel, London Handicap Scale, HAD, SF36 | Non | Plaquettes et intervention d’un « family-support organiser » | Améliore stress, qualité de vie et participation sociale pour les proches, pas de différence pour les patients |
| Rodgers et al. 1999 | ECR | Patientsproches | Global, bien précisé | SF36, Connaissances sur AVC questionnaire maison, HAD, Handicap | Cours théoriques | Amélioration des connaissances, Pas d’effet sur qualité de vie, HAD… | ||
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