- Email: [email protected]
Quality of life and physical functioning in patients with myopathy
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Abstracts / Annals of Physical and Rehabilitation Medicine 61S (2018) e435–e557
EuroQol-5D (EQ-5D) or Medical Outcome Study Short Form (MOS SF-12 or MOS SF-36) are often used, either to characterise a group of persons, or to evaluate their quality of life. Our aim is to highlight certain limitations in the scope of application of knowledge provided by these tools for PMR, among others. Material and method The analysis of the scales was carried out in two stages. Firstly, a sociologist has reviewed the diversity of the sociocultural aspects present in the scales, to notice the missing aspects, which appear significant according to several sociological studies. Secondly, 32 interviews with patients presenting aftereffects of a stroke were carried out to confirm and develop these reports. Results The problems which will be mentioned concern different aspects of the scales; the items and domains (lack of questions on autonomy and self-image), the list of possible responses (total or episodic lack of the response “I don’t know”) and the system of evaluation of quality of life (lack of a personal point of view on the impact on quality of life, and thus on possible improvements induced by treatment, whatever its nature). These faults and limitations are not confined to these four generalist scales, they can be found in other scales. Conclusion Our analysis invites future clinicians or researchers to improve existing tools and to develop new ones in order to cover a larger repertoire of important dimensions relating to the existence of persons. With this aim in mind, we will present a new tool for PMR, which takes into account the problems outlined. Keywords Quality of life; Stroke Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1063 ISPR8-0373
Fig. 1 The position of the 109 facial marker during the acquisition. In red the minimum optimum marker layout found by our automated procedure. Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1062
C1.09 Physical and rehabilitation medicine diagnostics as related to organ systems and body functions–Assessment of health perception and quality of live ISPR8-1558
Possible limits and improvements in the quality of life scales for patients presenting after-effects of a stroke A. Berthou 1,∗ , N. Roche 2 1 Hôpital Raymond-Poincaré, service de physiologie et d’explorations fonctionnelles, fondation Garches, Garches, France 2 Université de Versailles St-Quentin-en-Yvelines, hôpital Raymond-Poincaré, Inserm UMR U1179, service de physiologie et d’explorations fonctionnelles, Garches, France ∗ Corresponding author. E-mail address: [email protected] (A. Berthou) Introduction/Background The use of scales to evaluate quality of life is common practice in clinical research, particularly in Physical Medicine and Rehabilitation (PMR). Among existing scales, the
Quality of life and physical functioning in patients with myopathy A. Rohmer-Cohen 1,∗ , C. Bungener 2 , D. Delorme 1 , J. Rangel Escribano 1 , M. Mane 1 , P. Thoumie 1 1 Hôpital Rothshild, AP–HP, bâtiment Jardin, Paris, France 2 Université Sorbonne Paris Cité, Paris Descartes, psychologie, Boulogne-Billancourt, France ∗ Corresponding author. E-mail address: [email protected] (A. Rohmer-Cohen) Introduction/Background The aim of this research was to investigate the physical functioning of patients with myopathy and to measure its influence on quality of life (QoL). Previous studies have observed a lower QoL in myopathy than in control patients but its relationship with physical functioning as not yet been evaluated. We hypothesized that motor abilities evolution would predict a lower physical and psychological QoL. Material and method Twenty-five patients with adult-form myopathy were included: 14 patients with myotonic dystrophy type 1, 6 with facioscapulohumeral dystrophy, 2 with limb girdle muscular dystrophy, 1 with mitochondrial myopathy, 1 with Central Cores myopathy, 1 with Ullrich muscular dystrophy (population description in Table 1, n = 25). They all answered two questionnaires of QoL: Medical Outcomes Short-Form 36 (SF-36) which gives a physical and a mental score and the Quality of Life of genetics neuromuscular diseases (QoL-gNMD) which gives three under-scores: Body symptom, Selfperception, Activity and participation. The physical functioning was evaluated with two measures by physiotherapists: balance with the Berg Scale and walking range with the 6 Minute Walk Test. Results Linear regression analysis showed the 6 Minute Walk Test was significantly predictor of the three scores of QoL-gNMD and the physical score of SF-36. The under-score “Activity and Participation” was also predicted by a balance trouble (Table 2). None independent variable was linked with the mental score of SF-36.
Abstracts / Annals of Physical and Rehabilitation Medicine 61S (2018) e435–e557
Conclusion Results reveal the negative influence of the physical function lost on QoL, especially the walking range. Effects are observed in body aspects like symptom or social relationship as well as deeper psychological aspects as the self-perception. So, it appears very important to take into account the motor abilities evolution of each patient in order to recommend an adapted rehabilitation, and if necessary, a psychological support to optimally preserve their quality of life. Keywords Quality of life; Body functions; Myopathy Table 1
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test-retest reliability. Construct validity was supported by moderate association between LBI and HADS (rs = −0.46, P = 0.011) and between LBI and SIS (rs = 0.65, P = 0.002), as hypothesized. Conclusion In stroke recovery and rehabilitation, more attention is warranted to evaluate life balance. LBI results may guide the rehabilitation approach. Psychometric properties for the Flemish version of the LBI are underpinned by the results of this study and support use of LBI in clinical practice and research. Keywords Life balance; Stroke Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1065 ISPR8-0911
Quality of life and participation of Moroccans victims of the poisoning with adulterated oils a half-century after the outbreak Table 2 Regression analysis recapitulative, ** P-value < 0.01.
Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1064 ISPR8-2325
Validity and reliability of the life balance inventory in chronic stroke A. Van Gils 1,∗ , S. Meyer 1 , H. Beyens 2 , F. Schillebeeckx 2 , G. Verheyden 1 , D. Kos 1 1 KU Leuven, Department of Rehabilitation Sciences, Leuven, Belgium 2 University Hospitals Leuven, Department of Physical Medicine and Rehabilitation, Leuven, Belgium ∗ Corresponding author. E-mail address: [email protected] (A. Van Gils) Introduction/Background The Life Balance Inventory is a questionnaire developed to assess congruence between how people want to spend their time in various activities and how they actually spend their time in those activities. Stroke has a major impact on daily activities and life balance might be compromised after stroke. The aim of this study was to validate the Flemish version of the Life Balance Inventory (LBI) in people in the chronic phase after stroke. Material and method The LBI was translated according to the principles of translation and cultural adaptation process of patientreported outcomes. We recruited 22 first-ever stroke survivors, aged 18 or older and at least 6 months post-stroke. The LBI was administered twice, with a time interval of one week. Test-retest reliability of the LBI was examined using intraclass correlation coefficients (ICC) and Bland-Altman plots. Construct validity was assessed by calculating Spearman Rank correlation coefficients between LBI and Hospital Anxiety and Depression Scale (HADS) and Stroke Impact Scale (SIS). Results Mean age (± SD) of our sample was 60 ± 11 years, mean time post-stroke 655 ± 139 days and 14/22 (64%) participants were male. Mean total LBI score was 2.41 ± 0.42 out of 3 on the first occasion and 2.39 ± 0.47 on the second occasion, demonstrating relatively good satisfaction with life balance after stroke. The ICC [95%] for total LBI score was 0.91 [0.77–0.97] indicating good
A. Hajjioui 1,∗ , S. Karkouri 2 , M. Fourtassi 3 University Sidi Mohammed Ben Abdellah- Fez, Department of Physical and Rehabilitation Medicine, Fez, Morocco 2 Hospital University Center, Department of Physical and Rehabilitation Medicine, Rabat, Morocco 3 University Mohamed I, Department of Physical and Rehabilitation Medicine, Oujda, Morocco ∗ Corresponding author. E-mail addresses: [email protected], [email protected] (A. Hajjioui)
1
Introduction/Background In 1959, the poisoning with adulterated oils is one of the most tragic sanitary catastrophes in Morocco. More than 20,000 persons were affected and a larger number become disabled. Fifty-one years after, many patients continue to report participation restriction and impaired quality of life (QoL). This study aims to evaluate the outcome, QoL and participation of this population, a half-century after the tragedy. Material and method We conducted a cross-sectional study in 2010. Among 450 survivors, 111 people were included. A structured interview was carried out to investigate the socio-demographic and clinical aspects. The Functional Independence Measure (FIM) and Short Form Health Survey (SF-36) were used to assess activities limitations, participation restriction and QoL. To study the relationship between quality of life and disability, a univariate analysis was carried out. The Chi2 test was used for inter-group comparisons. A P-value of 0.05 was adopted as the limit for inclusion of a variable in the multivariate analysis. Results The average age of the study population is 68 ± 99.9 years with a female predominance (56%). The average age at the time of intoxication is 17 ± 9.97 years. The majority is married (68.5%), illiterate (58%), without any adhesion to the insurance system (79%) with similar cases in the family (63%). The overall average score for QoL is 31.64. Women were significantly more impaired than men. The age of over 65 years, illiterate and the female sex are the 3 factors of participation restrictions and Impaired quality of life in this population. Conclusion The improvement of the physical, psychic and social care is an urgent and obligatory action in a “right” approach, to ensure an optimal social participation of this population that has suffered and continues to suffer half a century after the outbreak. Keywords Toxic oil syndrome; Quality of life; Moroccan outbreak Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1066
Abstracts / Annals of Physical and Rehabilitation Medicine 61S (2018) e435–e557
EuroQol-5D (EQ-5D) or Medical Outcome Study Short Form (MOS SF-12 or MOS SF-36) are often used, either to characterise a group of persons, or to evaluate their quality of life. Our aim is to highlight certain limitations in the scope of application of knowledge provided by these tools for PMR, among others. Material and method The analysis of the scales was carried out in two stages. Firstly, a sociologist has reviewed the diversity of the sociocultural aspects present in the scales, to notice the missing aspects, which appear significant according to several sociological studies. Secondly, 32 interviews with patients presenting aftereffects of a stroke were carried out to confirm and develop these reports. Results The problems which will be mentioned concern different aspects of the scales; the items and domains (lack of questions on autonomy and self-image), the list of possible responses (total or episodic lack of the response “I don’t know”) and the system of evaluation of quality of life (lack of a personal point of view on the impact on quality of life, and thus on possible improvements induced by treatment, whatever its nature). These faults and limitations are not confined to these four generalist scales, they can be found in other scales. Conclusion Our analysis invites future clinicians or researchers to improve existing tools and to develop new ones in order to cover a larger repertoire of important dimensions relating to the existence of persons. With this aim in mind, we will present a new tool for PMR, which takes into account the problems outlined. Keywords Quality of life; Stroke Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1063 ISPR8-0373
Fig. 1 The position of the 109 facial marker during the acquisition. In red the minimum optimum marker layout found by our automated procedure. Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1062
C1.09 Physical and rehabilitation medicine diagnostics as related to organ systems and body functions–Assessment of health perception and quality of live ISPR8-1558
Possible limits and improvements in the quality of life scales for patients presenting after-effects of a stroke A. Berthou 1,∗ , N. Roche 2 1 Hôpital Raymond-Poincaré, service de physiologie et d’explorations fonctionnelles, fondation Garches, Garches, France 2 Université de Versailles St-Quentin-en-Yvelines, hôpital Raymond-Poincaré, Inserm UMR U1179, service de physiologie et d’explorations fonctionnelles, Garches, France ∗ Corresponding author. E-mail address: [email protected] (A. Berthou) Introduction/Background The use of scales to evaluate quality of life is common practice in clinical research, particularly in Physical Medicine and Rehabilitation (PMR). Among existing scales, the
Quality of life and physical functioning in patients with myopathy A. Rohmer-Cohen 1,∗ , C. Bungener 2 , D. Delorme 1 , J. Rangel Escribano 1 , M. Mane 1 , P. Thoumie 1 1 Hôpital Rothshild, AP–HP, bâtiment Jardin, Paris, France 2 Université Sorbonne Paris Cité, Paris Descartes, psychologie, Boulogne-Billancourt, France ∗ Corresponding author. E-mail address: [email protected] (A. Rohmer-Cohen) Introduction/Background The aim of this research was to investigate the physical functioning of patients with myopathy and to measure its influence on quality of life (QoL). Previous studies have observed a lower QoL in myopathy than in control patients but its relationship with physical functioning as not yet been evaluated. We hypothesized that motor abilities evolution would predict a lower physical and psychological QoL. Material and method Twenty-five patients with adult-form myopathy were included: 14 patients with myotonic dystrophy type 1, 6 with facioscapulohumeral dystrophy, 2 with limb girdle muscular dystrophy, 1 with mitochondrial myopathy, 1 with Central Cores myopathy, 1 with Ullrich muscular dystrophy (population description in Table 1, n = 25). They all answered two questionnaires of QoL: Medical Outcomes Short-Form 36 (SF-36) which gives a physical and a mental score and the Quality of Life of genetics neuromuscular diseases (QoL-gNMD) which gives three under-scores: Body symptom, Selfperception, Activity and participation. The physical functioning was evaluated with two measures by physiotherapists: balance with the Berg Scale and walking range with the 6 Minute Walk Test. Results Linear regression analysis showed the 6 Minute Walk Test was significantly predictor of the three scores of QoL-gNMD and the physical score of SF-36. The under-score “Activity and Participation” was also predicted by a balance trouble (Table 2). None independent variable was linked with the mental score of SF-36.
Abstracts / Annals of Physical and Rehabilitation Medicine 61S (2018) e435–e557
Conclusion Results reveal the negative influence of the physical function lost on QoL, especially the walking range. Effects are observed in body aspects like symptom or social relationship as well as deeper psychological aspects as the self-perception. So, it appears very important to take into account the motor abilities evolution of each patient in order to recommend an adapted rehabilitation, and if necessary, a psychological support to optimally preserve their quality of life. Keywords Quality of life; Body functions; Myopathy Table 1
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test-retest reliability. Construct validity was supported by moderate association between LBI and HADS (rs = −0.46, P = 0.011) and between LBI and SIS (rs = 0.65, P = 0.002), as hypothesized. Conclusion In stroke recovery and rehabilitation, more attention is warranted to evaluate life balance. LBI results may guide the rehabilitation approach. Psychometric properties for the Flemish version of the LBI are underpinned by the results of this study and support use of LBI in clinical practice and research. Keywords Life balance; Stroke Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1065 ISPR8-0911
Quality of life and participation of Moroccans victims of the poisoning with adulterated oils a half-century after the outbreak Table 2 Regression analysis recapitulative, ** P-value < 0.01.
Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1064 ISPR8-2325
Validity and reliability of the life balance inventory in chronic stroke A. Van Gils 1,∗ , S. Meyer 1 , H. Beyens 2 , F. Schillebeeckx 2 , G. Verheyden 1 , D. Kos 1 1 KU Leuven, Department of Rehabilitation Sciences, Leuven, Belgium 2 University Hospitals Leuven, Department of Physical Medicine and Rehabilitation, Leuven, Belgium ∗ Corresponding author. E-mail address: [email protected] (A. Van Gils) Introduction/Background The Life Balance Inventory is a questionnaire developed to assess congruence between how people want to spend their time in various activities and how they actually spend their time in those activities. Stroke has a major impact on daily activities and life balance might be compromised after stroke. The aim of this study was to validate the Flemish version of the Life Balance Inventory (LBI) in people in the chronic phase after stroke. Material and method The LBI was translated according to the principles of translation and cultural adaptation process of patientreported outcomes. We recruited 22 first-ever stroke survivors, aged 18 or older and at least 6 months post-stroke. The LBI was administered twice, with a time interval of one week. Test-retest reliability of the LBI was examined using intraclass correlation coefficients (ICC) and Bland-Altman plots. Construct validity was assessed by calculating Spearman Rank correlation coefficients between LBI and Hospital Anxiety and Depression Scale (HADS) and Stroke Impact Scale (SIS). Results Mean age (± SD) of our sample was 60 ± 11 years, mean time post-stroke 655 ± 139 days and 14/22 (64%) participants were male. Mean total LBI score was 2.41 ± 0.42 out of 3 on the first occasion and 2.39 ± 0.47 on the second occasion, demonstrating relatively good satisfaction with life balance after stroke. The ICC [95%] for total LBI score was 0.91 [0.77–0.97] indicating good
A. Hajjioui 1,∗ , S. Karkouri 2 , M. Fourtassi 3 University Sidi Mohammed Ben Abdellah- Fez, Department of Physical and Rehabilitation Medicine, Fez, Morocco 2 Hospital University Center, Department of Physical and Rehabilitation Medicine, Rabat, Morocco 3 University Mohamed I, Department of Physical and Rehabilitation Medicine, Oujda, Morocco ∗ Corresponding author. E-mail addresses: [email protected], [email protected] (A. Hajjioui)
1
Introduction/Background In 1959, the poisoning with adulterated oils is one of the most tragic sanitary catastrophes in Morocco. More than 20,000 persons were affected and a larger number become disabled. Fifty-one years after, many patients continue to report participation restriction and impaired quality of life (QoL). This study aims to evaluate the outcome, QoL and participation of this population, a half-century after the tragedy. Material and method We conducted a cross-sectional study in 2010. Among 450 survivors, 111 people were included. A structured interview was carried out to investigate the socio-demographic and clinical aspects. The Functional Independence Measure (FIM) and Short Form Health Survey (SF-36) were used to assess activities limitations, participation restriction and QoL. To study the relationship between quality of life and disability, a univariate analysis was carried out. The Chi2 test was used for inter-group comparisons. A P-value of 0.05 was adopted as the limit for inclusion of a variable in the multivariate analysis. Results The average age of the study population is 68 ± 99.9 years with a female predominance (56%). The average age at the time of intoxication is 17 ± 9.97 years. The majority is married (68.5%), illiterate (58%), without any adhesion to the insurance system (79%) with similar cases in the family (63%). The overall average score for QoL is 31.64. Women were significantly more impaired than men. The age of over 65 years, illiterate and the female sex are the 3 factors of participation restrictions and Impaired quality of life in this population. Conclusion The improvement of the physical, psychic and social care is an urgent and obligatory action in a “right” approach, to ensure an optimal social participation of this population that has suffered and continues to suffer half a century after the outbreak. Keywords Toxic oil syndrome; Quality of life; Moroccan outbreak Disclosure of interest The authors have not supplied their declaration of competing interest. https://doi.org/10.1016/j.rehab.2018.05.1066