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OBJECTIVE: Almost 80% of the patients responding to the nationwide French patient experience and satisfaction survey (e-Satis) provided free text comments. The objective of this article is to describe an innovative methodology for analysis of this qualitative data. METHODOLOGY: This methodological approach is based on analysis of qualitative data from the comments (verbatims) of respondents to the e-Satis survey. Analysis of the verbatims consists in three main steps: (i) analysis of the meaning of the words, with constitution of a thematic dictionary through exploratory research without preconceived notions; (ii) analysis of the syntax, i.e., the way in which the ideas are articulated, which will enable calculation of a linguistic indicator of speakers' involvement in their speech; (iii) production of statistics and characterisation of the themes, which will include three indicators: occurrence of the themes, the average satisfaction shown in the respondents' discourse, and the positive and negative involvement with which they express themselves. Given these results, a priority matrix of four categories of action is established: strong points, priority areas, good practices, and weak signals. RESULTS: This methodological approach was applied to 5868 e-Satis questionnaires out of a total of 10,061 verbatims by respondents hospitalised at the Hospices Civils de Lyon between 2018 and 2019. The analysis identified 28 major themes with 184 sub-themes. An extract is presented in this article for illustration purposes. DISCUSSION: A methodological approach based on analysis of qualitative data will enable transformation of unstructured data (verbatims) into measurable and comparable data. This methodology is structured to overcome the limitations of closed questions; open questions allow respondents to describe their experiences and perceptions in their own words. Moreover, it is a first step toward comparability of results over time with those of other establishments. This approach is unique in France on account of (a) its exploratory thematic research without preconceived notions and (b) its syntactic analysis of verbatims. CONCLUSIONS: This verbatim analysis methodology should enable precise and operational characterization of Patient Experience and induce prioritized improvement actions in healthcare institutions.
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Instalações de Saúde , Medidas de Resultados Relatados pelo Paciente , Humanos , Inquéritos e Questionários , Satisfação do Paciente , Projetos de PesquisaRESUMO
INTRODUCTION: Health sciences students usually report high rates of mental health problems. The COVID-19 pandemic context may have serious psychological impacts in this at-risk population. We aimed to assess the self-reported mental health status, health-related quality of life and coping strategies of health sciences students during the early stage of the pandemic. METHOD: An online 128-item questionnaire sent to 17,673 health sciences students from the Claude Bernard University Lyon 1 in April 2020 assessed: a) sociodemographic characteristics, b) conditions of lockdown, c) depressive (Beck Depression Inventory- Short Form, BDI-SF), anxiety (State-Trait Anxiety Inventory-A, STAI-A) and traumatic symptoms (Impact of Event Scale -Revised, IES-R), d) health-related quality of life (SF12) and e) coping strategies (Brief Coping Orientation to Problems Experienced, Brief COPE). RESULTS: The participation rate was 9.9% (n=1,765). A total of 19.5% of participants reported an IES-R>33, 11.6% depressive symptoms, 58.1% anxiety symptoms, and 4.4% suicidal ideation. Their mental health-related quality of life was significantly poorer than for physical health. Female gender, COVID-like symptoms, social isolation due to the lockdown, pandemic-related financial restraint and exams-related stress were significantly associated with poorer self-reported mental health conditions. Volunteering in the healthcare system was significantly associated with lower mental health scores. Coping strategies were mostly oriented toward avoidance and positive appraisal. CONCLUSION: French health sciences students exhibited high levels of self-reported mental health problems and a poor mental health-related quality of life during the early stage of the COVID-19 pandemic. Specific risk factors related to the pandemic partly explain the observed prevalence.
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COVID-19 , Feminino , Humanos , COVID-19/epidemiologia , Pandemias , Saúde Mental , Qualidade de Vida , Autorrelato , SARS-CoV-2 , Estresse Psicológico/psicologia , Controle de Doenças Transmissíveis , Adaptação Psicológica , Ansiedade/psicologia , Estudantes/psicologia , Inquéritos e Questionários , Depressão/psicologiaRESUMO
BACKGROUND AND PURPOSE: Large societal costs of stroke should not be ignored. We aimed to estimate patients' productivity losses and informal care costs during the first year after ischemic stroke. METHODS: A cross-sectional survey was performed within the STROKE69 regional population-based cohort study. At 1 year post-stroke, each patient and the corresponding main informal caregiver received questionnaires followed by a telephone interview if necessary. Time losses were valued using the human capital approach and proxy good method for patients with and without a professional activity, respectively. RESULTS: Among the 222 patients with ischemic stroke (58% men; mean age 68 years; and 86% with a modified Rankin Scale (mRS) score of <3 at 3 months), 54%, 32%, and 25% received informal, formal, and both cares, respectively. Among the 108 main informal caregivers, 63% were women, 74% lived with the patient, and 57% were retired or unemployed. The mean cost of productivity losses was estimated at 7589 ± 12 305 per patient in the first post-stroke year with 5.4%, 71.2%, and 23.4% of these being attributed to presenteeism, absenteeism, and leisure time, respectively. Informal care was given at an average of 25 h/week. The annual mean estimated total cost of informal care was 10 635 per caregiver. CONCLUSIONS: Informal care and productivity losses of patients with ischemic stroke during the first post-stroke year represent a significant economic burden for society comparable to direct costs. These costs should be included in economic evaluations with the adoption of a societal perspective to avoid underestimating the societal stroke economic burden.
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Isquemia Encefálica , AVC Isquêmico , Acidente Vascular Cerebral , Idoso , Isquemia Encefálica/terapia , Cuidadores , Estudos de Coortes , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Custos de Cuidados de Saúde , Humanos , Masculino , Assistência ao Paciente , Acidente Vascular Cerebral/terapiaRESUMO
BACKGROUND: Optimizing access to recanalization therapies in acute ischemic stroke patients is crucial. Our aim was to measure the short and long term effectiveness, at the acute phase and 1 year after stroke, of four sets of actions implemented in the Rhône County. METHODS: The four multilevel actions were 1) increase in stroke units bed capacity and development of endovascular therapy; 2) improvement in knowledge and skills of healthcare providers involved in acute stroke management using a bottom-up approach; 3) development and implementation of new organizations (transportation routes, pre-notification, coordination by the emergency call center physician dispatcher); and 4) launch of regional public awareness campaigns in addition to national campaigns. A before-and-after study was conducted with two identical population-based cohort studies in 2006-7 and 2015-16 in all adult ischemic stroke patients admitted to any emergency department or stroke unit of the Rhône County. The primary outcome criterion was in-hospital management times, and the main secondary outcome criteria were access to reperfusion therapy (either intravenous thrombolysis or endovascular treatment) and pre-hospital management times in the short term, and 12-month prognosis measured by the modified Rankin Scale (mRS) in the long term. RESULTS: Between 2015-16 and 2006-7 periods ischemic stroke patients increased from 696 to 717, access to reperfusion therapy increased from 9 to 23% (p < 0.0001), calls to emergency call-center from 40 to 68% (p < 0.0001), first admission in stroke unit from 8 to 30% (p < 0.0001), and MRI within 24 h from 18 to 42% (p < 0.0001). Onset-to-reperfusion time significantly decreased from 3h16mn [2 h54-4 h05] to 2h35mn [2 h05-3 h19] (p < 0.0001), mainly related to a decrease in delay from admission to imaging. A significant decrease of disability was observed, as patients with mild disability (mRS [0-2]) at 12 months increased from 48 to 61% (p < 0.0001). Pre-hospital times, however, did not change significantly. CONCLUSIONS: We observed significant improvement in access to reperfusion therapy, mainly through a strong decrease of in-hospital management times, and in 12-month disability after the implementation of four sets of actions between 2006 and 2016 in the Rhône County. Reducing pre-hospital times remains a challenge.
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Isquemia Encefálica , AVC Isquêmico , Acidente Vascular Cerebral , Adulto , Isquemia Encefálica/terapia , Humanos , Estudos Prospectivos , Acidente Vascular Cerebral/tratamento farmacológico , Terapia Trombolítica , Resultado do TratamentoRESUMO
BACKGROUND AND PURPOSE: Low socio-economic status of individuals has been reported to be associated with a higher incidence of stroke and influence the diagnosis after revascularization. However, whether it is associated with poorer acute stroke management is less clear. To determine whether social deprivation was associated with a poorer access to reperfusion therapy, either intravenous thrombolysis (IVT) and/or endovascular thrombectomy (EVT) in a population-based cohort. METHODS: Over a 14-month period, all consecutive adult patients admitted to any emergency department or a comprehensive or primary stroke center (CSC/PSC) of the Rhône county with a confirmed ischemic stroke were included. The socioeconomic status of each patient was measured using the European Deprivation Index (EDI). The association between EDI and access to reperfusion therapy was assessed in univariate and multivariate logistic regression analyses. RESULTS: Among the 1226 consecutive IS patients, 316 (25%) were admitted directly in a PSC or CSC, 241 (19.7%) received a reperfusion therapy; 155 IVT alone, 20 EVT alone, and 66 both therapies. Median age was 79 years, 1030 patients had an EDI level of 1 to 4, and 196 an EDI of 5 (the most deprived group). The most deprived patients (EDI level 5) did not have a poorer access to reperfusion therapy compared to all other patients in univariate (OR 1.22, 95%CI [0.85; 1.77]) nor in multivariate analyses (adjOR 0.97, 95%CI [0.57; 1.66]). CONCLUSIONS: We did not find any significant association between socioeconomic deprivation and access to reperfusion therapy. This suggests that the implementation of EVT was not associated with increased access inequities.
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Isquemia Encefálica , Procedimentos Endovasculares , Acidente Vascular Cerebral , Adulto , Idoso , Isquemia Encefálica/epidemiologia , Isquemia Encefálica/terapia , Fibrinolíticos , Humanos , Reperfusão , Fatores Socioeconômicos , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/terapia , Trombectomia , Terapia Trombolítica , Resultado do TratamentoRESUMO
BACKGROUND: The establishment of a common pragmatic terminology represents the first step in structuring patient engagement initiatives in healthcare facilities. However, none is currently available in French. As part of the deployment of patient engagement within a French University Hospital Center, we propose a terminology of patient engagement. METHODS: We conducted a scoping review of the international literature that aimed at identifying the main conceptual and terminological frameworks for the engagement of patients, users and citizens in the healthcare system until 2019 in the PubMed and Cairn.info databases for English and French language articles. Additionally, we identified concepts and practices in the leading organizations of countries where this approach was implemented (United States, Canada and especially the province of Quebec, United Kingdom) and completed this approach by close exchanges and reflections with the team that developed the Montreal model. RESULTS: In total, 75 references and Internet resources were consulted. Patient, interaction, patient experience, experiential knowledge, patient engagement, patient partner and its variations as a resource patient, peer-supporter, trainer, researcher and coach have been defined. CONCLUSION: This terminology of patient engagement proposes an initial stabilization of the vocabulary, using a pragmatic approach. This contribution is a first step aiming at promoting the development of a new model of care and more broadly of healthcare system management, involving scientific and experiential knowledge.
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Hospitais Universitários/organização & administração , Participação do Paciente , Relações Profissional-Paciente , Administração em Saúde Pública/métodos , Terminologia como Assunto , Canadá , França , Hospitais Universitários/normas , Humanos , Idioma , Quebeque , Reino Unido , Estados Unidos , VocabulárioRESUMO
We conducted a qualitative study with French men and women in order to provide insight into individuals' experiences, behaviors, and perceptions about osteoporosis (OP) and OP care. The data showed that both sexes, but especially men, were unfamiliar with OP, did not always feel concerned, and mistrusted pharmacological treatments. INTRODUCTION: To engage actively in osteoporosis (OP) prevention, people need to have basic knowledge about the disease. The aim of this qualitative study was to explore knowledge and representations of OP care and prevention among both men and women. METHODS: Focus groups were conducted in the Rhône-Alpes Region, France, with women aged 50-85 years and men aged 60-85 years, with or without a history of fragility fracture and/or an OP diagnosis (respectively referred to as "aware" or "unaware"). A total of 45 women (23 "aware" and 22 "unaware" in 5 and 4 focus groups, respectively) and 53 men (19 "aware" and 34 "unaware" in 3 and 4 focus groups, respectively) were included. A thematic analysis of transcripts was performed to explore knowledge and representations about OP, risk factors, prevention, and treatment. RESULTS: The data showed that both sexes, but especially men, had limited knowledge of OP and considered it as a natural aging process not related to fragility fractures. They generally did not feel concerned by OP and no important difference was observed between "aware" and "unaware" patients. Women expressed their fear of the disease, associated with aging and the end of life, while men considered it to be a women's disease only. Both sexes were aware of OP risk factors, but were suspicious towards treatments because of the associated side effects. CONCLUSION: Understanding people's representation of OP might help to provide patients with relevant information in order to optimize their preventive behavior and decrease the burden of the disease.
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Conhecimentos, Atitudes e Prática em Saúde , Osteoporose/prevenção & controle , Idoso , Idoso de 80 Anos ou mais , Conservadores da Densidade Óssea/uso terapêutico , Feminino , Grupos Focais , França , Humanos , Masculino , Pessoa de Meia-Idade , Osteoporose/etiologia , Osteoporose/psicologia , Fraturas por Osteoporose/etiologia , Fraturas por Osteoporose/prevenção & controle , Fraturas por Osteoporose/psicologia , Pesquisa Qualitativa , Fatores de Risco , Fatores SexuaisRESUMO
We conducted a multicenter, randomized controlled trial to evaluate the impact of a population-based patient-centered post-fracture care program with a dedicated case manager, PREVention of OSTeoporosis (PREVOST), on appropriate post-fracture osteoporosis management. We showed that, compared to usual care, BMD investigation post-fracture was significantly improved (+20%) by our intervention program. INTRODUCTION: Our study aims to evaluate the impact of a population-based patient-centered post-fracture care program, PREVOST, on appropriate post-fracture care. METHODS: Multicenter, randomized controlled trial enrolling 436 women aged 50 to 85 years and attending a French hospital, for a low-energy fracture of the wrist or humerus. Randomization was stratified by age, hospital department, and site of fracture. The intervention was performed by a trained case manager who interacted only with the patients, with repeated oral and written information about fragility fractures and osteoporosis management, and prompting them to visit their primary care physicians. Control group received usual care. The primary outcome was the initiation of an appropriate post-fracture care defined by Bone Mineral Density (BMD) and/or anti-osteoporotic treatment prescription at 6 months. RESULTS: At 6 months, 53% of women in intervention group initiated a post-fracture care versus 33% for usual care (adjOR 2.35, 95%CI [1.58-3.50], p < 0.001). Post-fracture care was more frequent after wrist than humerus fracture (adjOR 1.93, 95%CI [1.14-3.30], p = 0.015) and decreased with age (adjOR for 10 years increase 0.76, 95%CI [0.61-0.96], p = 0.02). The intervention resulted in BMD prescription in 50% of patients (adjOR 2.10, 95%CI [1.41-3.11], p < 0.001) and in BMD performance in 41% of patients (adjOR 2.12, 95%CI [1.40-3.20], p < 0.001) versus 33 and 25% for usual care, respectively. Having performed a BMD increased treatment prescription; however, only 46% of women with a low BMD requiring a treatment according to the French guidelines received a prescription. CONCLUSION: A patient-centered care program with a dedicated case manager can significantly improve post-fracture BMD investigation.
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Osteoporose Pós-Menopausa/diagnóstico , Fraturas por Osteoporose/diagnóstico , Educação de Pacientes como Assunto/organização & administração , Idoso , Densidade Óssea , Conservadores da Densidade Óssea/uso terapêutico , Prescrições de Medicamentos/estatística & dados numéricos , Feminino , Seguimentos , França , Fidelidade a Diretrizes , Humanos , Fraturas do Úmero/etiologia , Fraturas do Úmero/fisiopatologia , Pessoa de Meia-Idade , Osteoporose Pós-Menopausa/complicações , Osteoporose Pós-Menopausa/tratamento farmacológico , Osteoporose Pós-Menopausa/fisiopatologia , Fraturas por Osteoporose/etiologia , Fraturas por Osteoporose/fisiopatologia , Fraturas por Osteoporose/prevenção & controle , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Resultado do Tratamento , Traumatismos do Punho/etiologia , Traumatismos do Punho/fisiopatologiaRESUMO
BACKGROUND: Given the health, social and economic burden of neurodegenerative diseases (ND), the development of epidemiologic studies is required. Administrative databases, such as the French national health insurance database (SNIIRAM) could represent an opportunity for researchers. ND could be presumed from drug reimbursement data, hospital stays or registration of a chronic condition. The aim of this study was to describe, in French administrative databases, algorithms used to identify Alzheimer's disease and associated disorders (ADAD), Parkinson's disease and associated disorders (PDAD), multiple sclerosis (MS), and amyotrophic lateral sclerosis (ALS). METHODS: A systematic literature review was performed in Medline and gray literature through December 31th, 2015. French studies focusing on ADAD, PDAD, MS or ALS as a primary health outcome, conducted among one of the SNIIRAM data sources (outpatient reimbursements, chronic condition registration, hospital discharge) were included. RESULTS: Thirty-four studies were included (ADAD, n=18, PDAD, n=9, MS, n=4, ALS, n=3), leading to 36 algorithms. For each studied ND, there was an important variability in the algorithms, concerning (i) the type of criteria used (administrative database versus multi-source systems); (ii) the number of criteria used; (iii) the definition used for each criteria. The extent and level of drug exposure highly varied. Identification through hospitalizations showed variations in terms of type of stay (short stay, long-term stay, psychiatric ward ), extent of diagnosis codes used, diagnosis type (principal, related, associated diagnosis) and period used. A validation study was conducted for 2 out of 36 algorithms (PDAD), and criteria completeness was estimated for 3 algorithms (MS, ALS). CONCLUSION: Despite the increase in ND identification among French administrative databases, few algorithms have been validated. Validation studies should be encouraged.
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Bases de Dados Factuais/estatística & dados numéricos , Doenças Neurodegenerativas/epidemiologia , Algoritmos , França/epidemiologia , Humanos , Armazenamento e Recuperação da Informação , Programas Nacionais de Saúde/estatística & dados numéricosRESUMO
UNLABELLED: We found for the first time that in maintenance hemodialysis patients, higher sclerostin serum level was associated with severe abdominal aortic calcification (AAC). In addition, cortical bone microarchitecture (density and thickness) assessed by high-resolution peripheral quantitative computed tomography (HR-pQCT) at tibia was also independently associated with severe AAC. These results suggest that sclerostin may be involved in the association of mineral and bone disorder with vascular calcification in hemodialysis patients. INTRODUCTION: Severe abdominal aortic calcifications are predictive of high cardiovascular mortality in maintenance hemodialysis (MHD) patients. In patients with end-stage renal disease, a high aortic calcification score was associated with lower bone turnover on bone biopsies. Thus, we hypothesized that sclerostin, a Wnt pathway inhibitor mainly secreted by osteocytes and acting on osteoblasts to reduce bone formation, may be associated with vascular calcifications in MHD patients. METHODS: Fifty-three MHD patients, aged 53 years [35-63] (median [Q1-Q3]) were included. Serum was sampled before the MHD session to assay sclerostin. Framingham score was computed and the abdominal aortic calcification (AAC) score was assessed according to Kauppila method on lateral spine imaging using DEXA. Tibia bone status was evaluated by high-resolution peripheral quantitative computed tomography (HR-pQCT). Patients were distributed into two groups according to their AAC score: patients with mild or without AAC (score below 6) versus patients with severe AAC (score of 6 and above). RESULTS: In multivariate analysis, after adjustment on age, dialysis duration and diabetes, serum sclerostin and cortical thickness were independently associated with severe AAC (odds ratio (OR) = 1.43 for each 0.1 ng/mL increase [95 % confidence interval (CI) 1.10-1.83]; p = 0.006 and 0.16 for 1 SD increase [0.03-0.73]; p = 0.018, respectively). A second cardiovascular model adjusted on Framingham score and the above mentioned confounders showed similar results. CONCLUSIONS: Elevated sclerostin serum level and poorer tibia cortical bone structure by HR-pQCT were positively and independently associated with higher odds of severe AAC in MHD patients. Serum sclerostin may become a biomarker of mineral and bone disorder and vascular risk in MHD patients.
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Doenças da Aorta/sangue , Proteínas Morfogenéticas Ósseas/sangue , Diálise Renal/efeitos adversos , Calcificação Vascular/sangue , Proteínas Adaptadoras de Transdução de Sinal , Adulto , Idoso , Idoso de 80 Anos ou mais , Aorta Abdominal , Doenças da Aorta/etiologia , Biomarcadores/sangue , Densidade Óssea/fisiologia , Proteínas Morfogenéticas Ósseas/fisiologia , Feminino , Marcadores Genéticos/fisiologia , Humanos , Falência Renal Crônica/sangue , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Tíbia/diagnóstico por imagem , Tíbia/fisiopatologia , Tomografia Computadorizada por Raios X/métodos , Calcificação Vascular/etiologiaRESUMO
OBJECTIVES: To assess the use of molecular genotyping to accurately diagnose and treat human chorionic gonadotropin (hCG)-producing tumors and to evaluate the discriminating capacity of molecular testing on prognosis and overall survival. METHODS: We conducted a retrospective descriptive study of patients registered with the French Reference Center for Trophoblastic Disease between 1999 and 2021. We included all patients with hCG-producing tumors for whom results of molecular genotyping were available. RESULTS: Fifty-five patients with molecular genotyping were included: 81.2 % (n = 45) had tumors of gestational origin, 12.7 % (n = 7) of non-gestational origin and 5.5 % (n = 3) of undetermined origin. The results of molecular genotyping influenced the treatment decisions for 17 % of patients in this cohort. Overall survival was 93.3 % for patients with gestational tumors (after a median follow-up of 74 months) compared to 71.4 % for patients with non-gestational tumors (after a median follow-up of 23 months). CONCLUSION: In atypical presentations of hCG-producing tumors, molecular genotyping is a valuable tool to guide diagnosis and tailor treatment recommendations.
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Doença Trofoblástica Gestacional , Neoplasias Uterinas , Gravidez , Feminino , Humanos , Neoplasias Uterinas/diagnóstico , Estudos Retrospectivos , Genótipo , Doença Trofoblástica Gestacional/diagnóstico , Doença Trofoblástica Gestacional/genética , Doença Trofoblástica Gestacional/terapia , Gonadotropina CoriônicaRESUMO
BACKGROUND: To help prevent cervical cancer, three yearly opportunistic Pap smear screening is recommended in France for women aged 25-65 years. Pap smear screening coverage varies with age and socioeconomic level. The aim of this cross-sectional study was to identify factors associated with a low uptake of Pap smear screening among women with no limited access to healthcare. METHODS: We analyzed data from women aged 25-65 living in the Rhône-Alpes region who completed a self-administered questionnaire given to them by general practitioners between June and August 2008. The questionnaire covered knowledge about cervical cancer and its prevention as well as the women's history of Pap smear screening and other health-related behaviors. The relationship between low uptake of Pap smear screening--defined as not having had the test within the past 3 years--and a range of possible contributing factors was investigated using logistic regression. RESULTS: Of 1186 women with an intact uterus who completed the questionnaire, 89.1% said they had had a Pap smear within the past 3 years. On multivariate analysis, the 10.9% who had not were significantly more likely to live alone (1.76 [1.13-2.74]), to have no children (2.17 [1.31-3.62]), to have never used contraception (5.35 [2.98-9.62]), to have less knowledge about Pap smear screening (3.40 [1.55-7.49]), and to be unvaccinated against hepatitis B (0.55 [0.35-0.87]). CONCLUSION: Despite high overall compliance with Pap smear screening recommendations among women who consulted general practitioners, several factors were significantly associated with a low uptake of the service. Considering these factors may help to refine messages aimed at cervical cancer prevention.
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Clínicos Gerais/estatística & dados numéricos , Programas de Rastreamento/estatística & dados numéricos , Neoplasias do Colo do Útero/diagnóstico , Esfregaço Vaginal/estatística & dados numéricos , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , França/epidemiologia , Humanos , Pessoa de Meia-Idade , Cooperação do Paciente/estatística & dados numéricos , Fatores Socioeconômicos , Adulto JovemRESUMO
OBJECTIVE: Describe the "patient experience" regarding care provided during the surgical management of a loss of pregnancy in the first trimester and identify the factors influencing this experience. MATERIAL AND METHODS: It is an observational prospective study conducted in two type III, academic, maternity wards in Lyon, France, carrying out 8,500 deliveries per year. Adult female patients, having undergone a suction curettage for a loss of pregnancy in the first trimester from 24 December 2020 to 13 June 2021 were inculded. The "patient experience" was assessed using the 15 questions of the Picker Patient Experience (PPE-15) questionnaire, and research was conducted on factors influencing the patient experience. The main outcome was the percentage of patients reporting a problem in response to at least one of the PPE-15 questions. RESULTS: 58 out of 79 patients (73% CI [62-83]) reported at least one problem with their care. The largest proportion of problems was raised in question about "Opportunity for family/loved ones to talk to the doctor" (76% CI [61-87]). The lowest proportion of problems was raised in question about "Treated with respect and dignity" (8% CI [3-16]). No factors influencing the patient experience were identified. DISCUSSION: Almost three out of four patients reported a problem in the experience as a patient. The main areas of improvement reported by patients were the participation of their family/relatives and the emotional support provided by the healthcare team. TWEETABLE ABSTRACT: Better communication with patient families and emotional support could improve patient experience during the surgical management of a loss of pregnancy in the first trimester.
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Hospitais , Satisfação do Paciente , Adulto , Gravidez , Humanos , Feminino , Primeiro Trimestre da Gravidez , Estudos Prospectivos , FrançaRESUMO
BACKGROUND: The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. METHOD: A collaborative research group including patients and parents with clinicians and academic researchers was set up. They identified the situations along the CF care pathway from diagnosis to paediatric care, transition to adult care and adult follow-up, transfer to transplant centres and follow-up after transplantation. Participants were recruited by CF centres in metropolitan France and overseas departments. Semi-structured interviews were conducted, transcribed verbatim and subjected to an inductive analysis conducted in duos of researchers/co-researchers using NVivo®. The conceptual framework was discussed with the research group and presented to the CF centres during two video conferences. The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888-no. 20-700). RESULTS: The analysis led to a conceptual framework composed of domains of the CF journey, each divided into several items. 1. CF care: Management of care by the CF centre team; in-hospital care; quality of care in the community; therapeutic education and self-management support; at-home care; new therapies and research; procreation; 2. Transplant care: management of transplant and CF care; coordination with other specialties; education and self-management support; at-home care; procreation; new therapies and research; 3. Turning points along the journey: diagnosis of CF, transition to adult care, transfer to transplantation; 4. Social life with CF: housing, employment and education, social relations, social welfare and family finances. The number of patients included and the diversity of situations made it possible to achieve a sufficient richness and saturation of codes by domain to develop patient experience questionnaires. CONCLUSION: This conceptual framework, resulting from the participants' experience, will inform the design of a patient-reported experience tool, whose construct will be tested during the next phase of the ExPaParM project to assess its fidelity, intelligibility, and ability to report patient experience of the CF journey.
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Fibrose Cística , Medicina , Adulto , Criança , Humanos , Fibrose Cística/terapia , França , Cognição , Medidas de Resultados Relatados pelo PacienteRESUMO
INTRODUCTION: In France, the cystic fibrosis (CF) care pathway is coordinated by multidisciplinary teams from specialised CF centres or transplant centres. It includes the care provided at home or out of hospital, risk prevention in daily life and adjustments to social life, which together contribute to the person's quality of life. Patient experience is used to describe and evaluate the care and life of patients living with the disease. OBJECTIVES: Our collaborative research aims to identify the most significant areas and criteria that characterise the CF pathway. It will lead to the development of a questionnaire to collect patients' experience, which can be administered to all patients or parents of children registered and followed in the centres. The article describes the protocol developed in partnership with patients and parents of children living with the disease. METHOD: A multidisciplinary research group brings together researchers, patients, parents of children with CF and health care professionals. The patient partnership is involved in the 4 phases of the protocol: (1) setting up the study, recruiting patient and parent co-researchers, training them in qualitative research methods, defining the situations and profiles of patients in the study population, elaborating the protocol; (2) selecting the study sites, recruiting participants, carrying out semi-structured interviews, analysing verbatims using the grounded theory approach; (3) co-elaborating Patient-Reported Experience Measures (PREM) questionnaires adapted to the 4 types of participants: parents, adolescents, non-transplanted adults and transplanted adults; (4) validating the construct with participants and professionals from the study centres. RESULTS: The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888-no. 20-700). Training was provided to the 5 patients and 2 parent co-researchers to enable them to participate effectively in the research. Eleven centres participated in the recruitment of participants in mainland France and Reunion Island. Eighty hours of interviews were conducted. DISCUSSION: The PREM questionnaires to be elaborated will have to undergo psychometric validation before being used by the actors of the CF network to assess the impact on the care pathways of quality approaches or new therapies available in cystic fibrosis. Trial Registration Registry: IRB00003888 - no. 20-700. Issue date: 06/09/2020.
Assuntos
Procedimentos Clínicos , Fibrose Cística , Adolescente , Adulto , Criança , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: The objective of this study was to compare social and penal characteristics and consumption of psychoactive substances by alcohol-dependent and non-dependent inmates of the Lyon's prison in 2004. METHODS: The study was carried out among 2033 male adults incarcerated between January 1st and December 31st 2004. An administered questionnaire was proposed during the arrival visit to record social, administrative and penal data. Use of tobacco, alcohol and illicit drugs was quantified. RESULTS: In all, 1898 questionnaires were analysed. Comparison between alcohol-dependent (n=356) versus non alcohol-dependent inmates (n=1542), revealed that the alcohol-dependent population was older, mean age (34 years old versus 30 years, p<0.001), and had a higher unemployment rate (50% versus 39.4%, p<0.001). Alcohol addicts were more often repeated offenders (62% versus 50.7%, p=0.001), had a higher rate of Subutex mixture (11% versus 3.2%, p<0.001) and presented more psychic suffering (21% versus 6%, p<0.001). Multivariate analysis identified use of psychotop drugs, use of psychoactive substances, age and familial situation as significantly and independently associated with the abusise alcohol consumption. CONCLUSION: Because of an elevated prevalence of alcohol dependence among arriving penitentiary inmates, effective screening is needed to prevent withdrawal syndrome and propose care adapted to the specific features of this dependent population: social insecurity and polydrug abuse.
Assuntos
Alcoolismo/epidemiologia , Prisioneiros/psicologia , Adolescente , Adulto , Fatores Etários , Relações Familiares , França , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Psicotrópicos/administração & dosagem , Recidiva , Inquéritos e Questionários , DesempregoRESUMO
OBJECTIVE: Glucose metabolism disorders are a new point of interest in cystic fibrosis (CF) management. Cystic fibrosis-related diabetes mellitus (CFRD) increases alteration of pulmonary function as well as patients' morbidity and mortality. In France, CF patients are exclusively followed up in reference centers. We conducted a practices survey on screening and diagnosis of glucose metabolism disorders at 4 French CF centers. The objective of this study was to assess adherence to practice guidelines developed in 2002 at these centers. METHODS: This study was conducted in 2 sessions: 60 medical records were randomly selected in 2005 and in 2007 for patients aged over 10 years followed up at 4 CF centers. A questionnaire survey was completed for each patient with questions on CFRD screening, diagnosis, monitoring and treatment. Our guidelines recommend random blood glucose (RBG) at each standard biological test, annual glycosylated haemoglobin and an oral glucose tolerance test (OGTT) at 10, 15 and 18 years of age, then every 2 or 3 years. RESULTS: An annual RBG was performed in 82% of patients in 2005 and 91.5% in 2007. HbA1c screening was performed annually for 77% of patients in the 1st session and for 90% of patients for the 2nd session (p<0.10). Adherence to OGTT guidelines was better for adults than children: 96% had an OGTT during the 3 years of the first session and 79% during the second session, while fewer than 50% of children had their OGTT at 15 and 18 years of age. Taking the OGTT at 10 years of age could not be assessed because no patients were 10 years old during the study period. Screening for neurological complications of CFRD was assessed in the majority of diabetic patients, while half or less than half had annual fundus oculi or microalbuminuria dosage. DISCUSSION: There was an improvement in screening for CFRD and glucose metabolism disorders between 2005 and 2007, even though practices could still be improved. This shows that clinical guidelines can be implemented and followed. However, screening and management criteria for glucose metabolism disorders must be consensus-based with higher evidence in order to limit the variability of practices and prevent CFRD-related complications.