Sophie Alami - Academia.edu (original) (raw)
Papers by Sophie Alami
Aujourd'hui les services ont atteint les limites de leur amelioration que ce soit pour les se... more Aujourd'hui les services ont atteint les limites de leur amelioration que ce soit pour les services publics ou pour la grande consommation. Cette fin de cycle est concomitante aune perte des points de repere sociaux. L'idee centrale est qu'en periode de grande mutation, une approche structurale qui recherche les invariants des mecanismes sociaux et des comportements des usagers au-dela des variations apparentes, ici l'ethno-marketing, peut etre utilisee comme un outil qualitatif pertinent de prospective des services et des biens. La base de la methode est de partir des pratiques du quotidien dans l'univers domestique, pour reperer les formes de la delegation, des routines, des programmations ou des improvisations qui sont considerees comme des structures d'attente des innovations techniques proposees aux usagers, plutot que de partir des intentions ou des motivations des acteurs.
Annals of physical and rehabilitation medicine, Apr 1, 2015
British Journal of Dermatology, Mar 18, 2020
Journal of Clinical Medicine
Differences in disability perception between patients and care providers may impact outcomes. We ... more Differences in disability perception between patients and care providers may impact outcomes. We aimed to explore differences in disability perception between patients and care providers in systemic sclerosis (SSc). We conducted a cross-sectional internet-based mirror survey. SSc patients participating in the online SPIN Cohort and care providers affiliated with 15 scientific societies were surveyed using the Cochin Scleroderma International Classification of Functioning, Disability and Health (ICF)-65 questionnaire, including 65 items (from 0 to 10), representing 9 domains of disability. Mean differences between patients and care providers were calculated. Care providers’ characteristics associated with a mean difference ≥ 2 of 10 points were assessed in multivariate analysis. Answers were analyzed for 109 patients and 105 care providers. The mean age of patients was 55.9 (14.7) years and the disease duration was 10.1 (7.5) years. For all domains of the ICF-65, care providers’ rate...
PLOS ONE, Jan 21, 2013
Objective: We aimed to develop a questionnaire assessing fears and beliefs of patients with knee ... more Objective: We aimed to develop a questionnaire assessing fears and beliefs of patients with knee OA. Design: We sent a detailed document reporting on a qualitative analysis of interviews of patients with knee OA to experts, and a Delphi procedure was adopted for item generation. Then, 80 physicians recruited 566 patients with knee OA to test the provisional questionnaire. Items were reduced according to their metric properties and exploratory factor analysis. Reliability was tested by the Cronbach a coefficient. Construct validity was tested by divergent validity and confirmatory factor analysis. Test-retest reliability was assessed by the intra-class correlation coefficient (ICC) and the Bland and Altman technique. Results: 137 items were extracted from analysis of the interview data. Three Delphi rounds were needed to obtain consensus on a 25-item provisional questionnaire. The item-reduction process resulted in an 11-item questionnaire. Selected items represented fears and beliefs about daily living activities (3 items), fears and beliefs about physicians (4 items), fears and beliefs about the disease (2 items), and fears and beliefs about sports and leisure activities (2 items). The Cronbach a coefficient of global score was 0.85. We observed expected divergent validity. Confirmation factor analyses confirmed higher intra-factor than inter-factor correlations. Test-retest reliability was good, with an ICC of 0.81, and Bland and Altman analysis did not reveal a systematic trend. Conclusions: We propose an 11-item questionnaire assessing patients' fears and beliefs concerning knee OA with good content and construct validity.
Revue du Rhumatisme, 2020
Annals of Physical and Rehabilitation Medicine
SIGLEAvailable at INIST (FR), Document Supply Service, under shelf-number : RP 14286 / INIST-CNRS... more SIGLEAvailable at INIST (FR), Document Supply Service, under shelf-number : RP 14286 / INIST-CNRS - Institut de l'Information Scientifique et TechniqueFRFranc
Annals of the Rheumatic Diseases, 2019
Background: Few patient-reported outcomes measures (PROs) have been specifically designed to asse... more Background: Few patient-reported outcomes measures (PROs) have been specifically designed to assess the functioning of patients with systemic sclerosis (SSc). In addition, the development of currently available instruments did not fully follow current guidelines (1) Objectives: To develop and validate a PRO assessing activity limitation and participation restriction of patients with SSc. Methods: A provisional International Classification of Functioning, Disability and Health (ICF)-based 65-item questionnaire previously developed from interviews of SSc patients was submitted online to French patients (n=184) of the Scleroderma Patient-centered Intervention Network e-cohort (2). Items were reduced according to their metric properties, dimensional structure of the questionnaire was assessed by principal component analysis, convergent and divergent validities using the Spearman correlation coefficient (ρ), internal consistency by the Cronbach α coefficient and reliability by a test-ret...
JAMA Internal Medicine, 2021
Importance Osteopathic manipulative treatment (OMT) is frequently offered to people with nonspeci... more Importance Osteopathic manipulative treatment (OMT) is frequently offered to people with nonspecific low back pain (LBP) but never compared with sham OMT for reducing LBP-specific activity limitations. Objective To compare the efficacy of standard OMT vs sham OMT for reducing LBP-specific activity limitations at 3 months in persons with nonspecific subacute or chronic LBP. Design, Setting, and Participants This prospective, parallel-group, single-blind, single-center, sham-controlled randomized clinical trial recruited participants with nonspecific subacute or chronic LBP from a tertiary care center in France starting February 17, 2014, with follow-up completed on October 23, 2017. Participants were randomly allocated to interventions in a 1:1 ratio. Data were analyzed from March 22, 2018, to December 5, 2018. Interventions Six sessions (1 every 2 weeks) of standard OMT or sham OMT delivered by nonphysician, nonphysiotherapist osteopathic practitioners. Main Outcomes and Measures The primary end point was mean reduction in LBP-specific activity limitations at 3 months as measured by the self-administered Quebec Back Pain Disability Index (score range, 0-100). Secondary outcomes were mean reduction in LBP-specific activity limitations; mean changes in pain and health-related quality of life; number and duration of sick leaves, as well as number of LBP episodes at 12 months; and consumption of analgesics and nonsteroidal anti-inflammatory drugs at 3 and 12 months. Adverse events were self-reported at 3, 6, and 12 months. Results Overall, 200 participants were randomly allocated to standard OMT and 200 to sham OMT, with 197 analyzed in each group; the median (range) age at inclusion was 49.8 (40.7-55.8) years, 235 of 394 (59.6%) participants were women, and 359 of 393 (91.3%) were currently working. The mean (SD) duration of the current LBP episode was 7.5 (14.2) months. Overall, 164 (83.2%) patients in the standard OMT group and 159 (80.7%) patients in the sham OMT group had the primary outcome data available at 3 months. The mean (SD) Quebec Back Pain Disability Index scores for the standard OMT group were 31.5 (14.1) at baseline and 25.3 (15.3) at 3 months, and in the sham OMT group were 27.2 (14.8) at baseline and 26.1 (15.1) at 3 months. The mean reduction in LBP-specific activity limitations at 3 months was -4.7 (95% CI, -6.6 to -2.8) and -1.3 (95% CI, -3.3 to 0.6) for the standard OMT and sham OMT groups, respectively (mean difference, -3.4; 95% CI, -6.0 to -0.7; P = .01). At 12 months, the mean difference in mean reduction in LBP-specific activity limitations was -4.3 (95% CI, -7.6 to -1.0; P = .01), and at 3 and 12 months, the mean difference in mean reduction in pain was -1.0 (95% CI, -5.5 to 3.5; P = .66) and -2.0 (95% CI, -7.2 to 3.3; P = .47), respectively. There were no statistically significant differences in other secondary outcomes. Four and 8 serious adverse events were self-reported in the standard OMT and sham OMT groups, respectively, though none was considered related to OMT. Conclusions and Relevance In this randomized clinical trial of patients with nonspecific subacute or chronic LBP, standard OMT had a small effect on LBP-specific activity limitations vs sham OMT. However, the clinical relevance of this effect is questionable. Trial Registration ClinicalTrials.gov Identifier: NCT02034864.
Rheumatology, 2019
Objectives To develop an International Classification of Functioning, Disability and Health (ICF)... more Objectives To develop an International Classification of Functioning, Disability and Health (ICF) core set for SSc and to conceive a patient-centred ICF-based questionnaire assessing activities and participation in patients with SSc. Methods The construction of the ICF core set followed two steps. In the first step, meaningful concepts related to SSc were collected using data source triangulation from patients (n = 18), experts (n = 10) and literature (n = 174 articles). In the second step, concepts were linked to the best-matching ICF categories by one reviewer according to prespecified linking rules. Finally, patient-reported activities and participation categories of the ICF core set were translated into understandable questions. Results After linking concepts to ICF categories, 150 ICF categories were collected from focus groups, 22 from experts and 82 from literature. After fusion of the sources and removal of duplicates, the ICF core set included 164 categories: one at the fir...
Annals of Physical and Rehabilitation Medicine, 2018
La Revue de Médecine Interne, 2009
Les formes diffuses représentaient 66,3 % et les formes limitées 29,2 %. Seize patients sont décé... more Les formes diffuses représentaient 66,3 % et les formes limitées 29,2 %. Seize patients sont décédés. La probabilité de survie est évaluée à 93,4 %, 79,1 % et 76,8 % à 5, 10 et 15 ans. Les Ac anticentromères représentaient 12,4 % alors que les Scl70 étaient présents chez 31,5 %. Vingt-neuf patients présenteront une autre connectivite durant le suivi (32,5 %). Pour 34,8 %, il existait une myosite associée. Une pneumopathie interstitielle diffuse était présente pour 67,4 % de nos patients alors que l'hypertension artérielle pulmonaire concernait 28 %. Cette dernière était considérée comme responsable de 6 décès alors que l'atteinte intestinale (14 patients, 15,7 %), l'était pour 4. Seuls 2 patients (2,2 %) déclenchaient une crise rénale sclérodermique. Discussion.-La SSc est plus fréquente en Martinique que dans la plupart des populations caucasiennes étudiées mais moins fréquente que la seule autre population d'origine africaine étudiée à Détroit, USA. Les caractéristiques cliniques et biologiques leur sont très proches : plus forte prévalence de formes cutanées diffuses, de pneumopathie interstitielle diffuse, d'hypertension pulmonaire, d'anticorps anti-SCl70, de dépigmentation (50 %) et plus faible fréquence des anticorps anticentromère que chez les caucasiens. Conclusion.-Notre population présente une incidence élevée de SSc avec des particularités cliniques et biologiques proches de celles décrites chez les afroaméricains.
Revue du Rhumatisme, 2007
La Revue de Médecine Interne, 2011
Aujourd'hui les services ont atteint les limites de leur amelioration que ce soit pour les se... more Aujourd'hui les services ont atteint les limites de leur amelioration que ce soit pour les services publics ou pour la grande consommation. Cette fin de cycle est concomitante aune perte des points de repere sociaux. L'idee centrale est qu'en periode de grande mutation, une approche structurale qui recherche les invariants des mecanismes sociaux et des comportements des usagers au-dela des variations apparentes, ici l'ethno-marketing, peut etre utilisee comme un outil qualitatif pertinent de prospective des services et des biens. La base de la methode est de partir des pratiques du quotidien dans l'univers domestique, pour reperer les formes de la delegation, des routines, des programmations ou des improvisations qui sont considerees comme des structures d'attente des innovations techniques proposees aux usagers, plutot que de partir des intentions ou des motivations des acteurs.
Annals of physical and rehabilitation medicine, Apr 1, 2015
British Journal of Dermatology, Mar 18, 2020
Journal of Clinical Medicine
Differences in disability perception between patients and care providers may impact outcomes. We ... more Differences in disability perception between patients and care providers may impact outcomes. We aimed to explore differences in disability perception between patients and care providers in systemic sclerosis (SSc). We conducted a cross-sectional internet-based mirror survey. SSc patients participating in the online SPIN Cohort and care providers affiliated with 15 scientific societies were surveyed using the Cochin Scleroderma International Classification of Functioning, Disability and Health (ICF)-65 questionnaire, including 65 items (from 0 to 10), representing 9 domains of disability. Mean differences between patients and care providers were calculated. Care providers’ characteristics associated with a mean difference ≥ 2 of 10 points were assessed in multivariate analysis. Answers were analyzed for 109 patients and 105 care providers. The mean age of patients was 55.9 (14.7) years and the disease duration was 10.1 (7.5) years. For all domains of the ICF-65, care providers’ rate...
PLOS ONE, Jan 21, 2013
Objective: We aimed to develop a questionnaire assessing fears and beliefs of patients with knee ... more Objective: We aimed to develop a questionnaire assessing fears and beliefs of patients with knee OA. Design: We sent a detailed document reporting on a qualitative analysis of interviews of patients with knee OA to experts, and a Delphi procedure was adopted for item generation. Then, 80 physicians recruited 566 patients with knee OA to test the provisional questionnaire. Items were reduced according to their metric properties and exploratory factor analysis. Reliability was tested by the Cronbach a coefficient. Construct validity was tested by divergent validity and confirmatory factor analysis. Test-retest reliability was assessed by the intra-class correlation coefficient (ICC) and the Bland and Altman technique. Results: 137 items were extracted from analysis of the interview data. Three Delphi rounds were needed to obtain consensus on a 25-item provisional questionnaire. The item-reduction process resulted in an 11-item questionnaire. Selected items represented fears and beliefs about daily living activities (3 items), fears and beliefs about physicians (4 items), fears and beliefs about the disease (2 items), and fears and beliefs about sports and leisure activities (2 items). The Cronbach a coefficient of global score was 0.85. We observed expected divergent validity. Confirmation factor analyses confirmed higher intra-factor than inter-factor correlations. Test-retest reliability was good, with an ICC of 0.81, and Bland and Altman analysis did not reveal a systematic trend. Conclusions: We propose an 11-item questionnaire assessing patients' fears and beliefs concerning knee OA with good content and construct validity.
Revue du Rhumatisme, 2020
Annals of Physical and Rehabilitation Medicine
SIGLEAvailable at INIST (FR), Document Supply Service, under shelf-number : RP 14286 / INIST-CNRS... more SIGLEAvailable at INIST (FR), Document Supply Service, under shelf-number : RP 14286 / INIST-CNRS - Institut de l'Information Scientifique et TechniqueFRFranc
Annals of the Rheumatic Diseases, 2019
Background: Few patient-reported outcomes measures (PROs) have been specifically designed to asse... more Background: Few patient-reported outcomes measures (PROs) have been specifically designed to assess the functioning of patients with systemic sclerosis (SSc). In addition, the development of currently available instruments did not fully follow current guidelines (1) Objectives: To develop and validate a PRO assessing activity limitation and participation restriction of patients with SSc. Methods: A provisional International Classification of Functioning, Disability and Health (ICF)-based 65-item questionnaire previously developed from interviews of SSc patients was submitted online to French patients (n=184) of the Scleroderma Patient-centered Intervention Network e-cohort (2). Items were reduced according to their metric properties, dimensional structure of the questionnaire was assessed by principal component analysis, convergent and divergent validities using the Spearman correlation coefficient (ρ), internal consistency by the Cronbach α coefficient and reliability by a test-ret...
JAMA Internal Medicine, 2021
Importance Osteopathic manipulative treatment (OMT) is frequently offered to people with nonspeci... more Importance Osteopathic manipulative treatment (OMT) is frequently offered to people with nonspecific low back pain (LBP) but never compared with sham OMT for reducing LBP-specific activity limitations. Objective To compare the efficacy of standard OMT vs sham OMT for reducing LBP-specific activity limitations at 3 months in persons with nonspecific subacute or chronic LBP. Design, Setting, and Participants This prospective, parallel-group, single-blind, single-center, sham-controlled randomized clinical trial recruited participants with nonspecific subacute or chronic LBP from a tertiary care center in France starting February 17, 2014, with follow-up completed on October 23, 2017. Participants were randomly allocated to interventions in a 1:1 ratio. Data were analyzed from March 22, 2018, to December 5, 2018. Interventions Six sessions (1 every 2 weeks) of standard OMT or sham OMT delivered by nonphysician, nonphysiotherapist osteopathic practitioners. Main Outcomes and Measures The primary end point was mean reduction in LBP-specific activity limitations at 3 months as measured by the self-administered Quebec Back Pain Disability Index (score range, 0-100). Secondary outcomes were mean reduction in LBP-specific activity limitations; mean changes in pain and health-related quality of life; number and duration of sick leaves, as well as number of LBP episodes at 12 months; and consumption of analgesics and nonsteroidal anti-inflammatory drugs at 3 and 12 months. Adverse events were self-reported at 3, 6, and 12 months. Results Overall, 200 participants were randomly allocated to standard OMT and 200 to sham OMT, with 197 analyzed in each group; the median (range) age at inclusion was 49.8 (40.7-55.8) years, 235 of 394 (59.6%) participants were women, and 359 of 393 (91.3%) were currently working. The mean (SD) duration of the current LBP episode was 7.5 (14.2) months. Overall, 164 (83.2%) patients in the standard OMT group and 159 (80.7%) patients in the sham OMT group had the primary outcome data available at 3 months. The mean (SD) Quebec Back Pain Disability Index scores for the standard OMT group were 31.5 (14.1) at baseline and 25.3 (15.3) at 3 months, and in the sham OMT group were 27.2 (14.8) at baseline and 26.1 (15.1) at 3 months. The mean reduction in LBP-specific activity limitations at 3 months was -4.7 (95% CI, -6.6 to -2.8) and -1.3 (95% CI, -3.3 to 0.6) for the standard OMT and sham OMT groups, respectively (mean difference, -3.4; 95% CI, -6.0 to -0.7; P = .01). At 12 months, the mean difference in mean reduction in LBP-specific activity limitations was -4.3 (95% CI, -7.6 to -1.0; P = .01), and at 3 and 12 months, the mean difference in mean reduction in pain was -1.0 (95% CI, -5.5 to 3.5; P = .66) and -2.0 (95% CI, -7.2 to 3.3; P = .47), respectively. There were no statistically significant differences in other secondary outcomes. Four and 8 serious adverse events were self-reported in the standard OMT and sham OMT groups, respectively, though none was considered related to OMT. Conclusions and Relevance In this randomized clinical trial of patients with nonspecific subacute or chronic LBP, standard OMT had a small effect on LBP-specific activity limitations vs sham OMT. However, the clinical relevance of this effect is questionable. Trial Registration ClinicalTrials.gov Identifier: NCT02034864.
Rheumatology, 2019
Objectives To develop an International Classification of Functioning, Disability and Health (ICF)... more Objectives To develop an International Classification of Functioning, Disability and Health (ICF) core set for SSc and to conceive a patient-centred ICF-based questionnaire assessing activities and participation in patients with SSc. Methods The construction of the ICF core set followed two steps. In the first step, meaningful concepts related to SSc were collected using data source triangulation from patients (n = 18), experts (n = 10) and literature (n = 174 articles). In the second step, concepts were linked to the best-matching ICF categories by one reviewer according to prespecified linking rules. Finally, patient-reported activities and participation categories of the ICF core set were translated into understandable questions. Results After linking concepts to ICF categories, 150 ICF categories were collected from focus groups, 22 from experts and 82 from literature. After fusion of the sources and removal of duplicates, the ICF core set included 164 categories: one at the fir...
Annals of Physical and Rehabilitation Medicine, 2018
La Revue de Médecine Interne, 2009
Les formes diffuses représentaient 66,3 % et les formes limitées 29,2 %. Seize patients sont décé... more Les formes diffuses représentaient 66,3 % et les formes limitées 29,2 %. Seize patients sont décédés. La probabilité de survie est évaluée à 93,4 %, 79,1 % et 76,8 % à 5, 10 et 15 ans. Les Ac anticentromères représentaient 12,4 % alors que les Scl70 étaient présents chez 31,5 %. Vingt-neuf patients présenteront une autre connectivite durant le suivi (32,5 %). Pour 34,8 %, il existait une myosite associée. Une pneumopathie interstitielle diffuse était présente pour 67,4 % de nos patients alors que l'hypertension artérielle pulmonaire concernait 28 %. Cette dernière était considérée comme responsable de 6 décès alors que l'atteinte intestinale (14 patients, 15,7 %), l'était pour 4. Seuls 2 patients (2,2 %) déclenchaient une crise rénale sclérodermique. Discussion.-La SSc est plus fréquente en Martinique que dans la plupart des populations caucasiennes étudiées mais moins fréquente que la seule autre population d'origine africaine étudiée à Détroit, USA. Les caractéristiques cliniques et biologiques leur sont très proches : plus forte prévalence de formes cutanées diffuses, de pneumopathie interstitielle diffuse, d'hypertension pulmonaire, d'anticorps anti-SCl70, de dépigmentation (50 %) et plus faible fréquence des anticorps anticentromère que chez les caucasiens. Conclusion.-Notre population présente une incidence élevée de SSc avec des particularités cliniques et biologiques proches de celles décrites chez les afroaméricains.
Revue du Rhumatisme, 2007
La Revue de Médecine Interne, 2011
ABSTRACT Comment détecter les phénomènes sociaux émergents – une nouvelle technologie, un nouvel ... more ABSTRACT Comment détecter les phénomènes sociaux émergents – une nouvelle technologie, un nouvel usage ou un nouvel imaginaire sociétal ? L’enquête qualitative, parce qu’elle est au plus près du terrain et des acteurs, permet de mettre au jour des faits, des signaux faibles, des mécanismes sociaux, qu’une approche quantitative ignorerait. S’appuyant sur l’expérience des auteurs dans le domaine des innovations et du changement culturel et social, en France et à l’étranger, cet ouvrage explique, de manière concrète, comment se construisent des enquêtes qualitatives. Il présente les principales méthodes qualitatives, les techniques de recueil de données et souligne l’importance de la flexibilité et du sens de l’observation dont doit faire preuve l’enquêteur sur le terrain.