Analyse du parcours de santé au cours des maladies neurologiques handicapantes et évolutives

Cordesse, Valérie; Jametal, T.; Guy, Cynthia D.; Lefebvre, Sandrine; Roussel, Martine; Ruggeri, Janis; Schimmel, Priscilla; Holstein, J.; Meininger, Vincent

doi:10.1016/j.neurol.2012.12.004

Cited by 10 publications

(5 citation statements)

References 22 publications

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“…It has shed some light regarding the various aspects to improve. Patients confirm the important aspects that are information and acknowledgement of their personal social, familial and professional situation as it has also been reported in other studies [6,7], Ruggeri et al, page 11 and in national clinical guidelines [8,9]. Among the dissatisfaction reported, lack of follow up at the PEC after 'De novo' consultation is a main complain.…”

Section: Discussionsupporting

confidence: 83%

“De-novo” consultation: Evaluation of an outpatient's clinic dedicated to early diagnosis of parkinsonian syndromes

et al. 2017

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Section: Discussionsupporting

confidence: 83%

“De-novo” consultation: Evaluation of an outpatient's clinic dedicated to early diagnosis of parkinsonian syndromes

et al. 2017

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“…Although several new therapies have emerged to treat PD, these treatment strategies only provide symptomatic relief and do not affect the progression of the disease [53]. Moreover, long-term use of these drugs can induce adverse side effects which may not be tolerated by patients with PD.…”

Section: Discussionmentioning

confidence: 99%

Neuroprotective Effects of a Variety of Pomegranate Juice Extracts against MPTP-Induced Cytotoxicity and Oxidative Stress in Human Primary Neurons

Braidy

Subash

Essa

et al. 2013

Oxidative Medicine and Cellular Longevity

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1-Methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) is an environmental toxin which selectively induces oxidative damage and mitochondrial and proteasomal dysfunctions to dopaminergic neurons in the substantia nigra leading to Parkinsonian syndrome in animal models and humans. MPTP is one of the most widely used in vitro models to investigate the pathophysiology of Parkinson's disease (PD) and, screen for novel therapeutic compounds that can slow down or ameliorate this progressive degenerative disease. We investigated the therapeutic effect of pomegranate juice extracts (PJE), Helow, Malasi, Qusum, and Hamadh against MPTP-induced neurotoxicity in primary human neurons by examining extracellular LDH activity, intracellular NAD+ and ATP levels, and endogenous antioxidant levels including lipid peroxidation products, catalase, superoxide dismutase (SOD) and glutathione peroxidase (GPx) activities, and reduced glutathione (GSH) levels. MPTP induced a reduction in SOD and GPx activities and intracellular NAD+, ATP, and GSH levels parallel to an increase in extracellular LDH and CAT activities, although lipid peroxidation was not altered. We report that helow and malasi can ameliorate MPTP-induced neurotoxicity by attenuating the observed changes in redox function to a greater extent than qusum and hamedh. Selected PJE varieties may exhibit properties which may be of therapeutic value to slow down age-related degeneration and neurodegeneration in particular.

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“…ExPaParM proposes a method to co-construct a PREM based on patient experience from a large number of health and life situations in the context of a rare disease. The journeys of people living with a rare disease have distinctive characteristics beginning from (and sometimes before) the diagnosis, with multiple transitions and a level of complexity of care and life with the disease that can only be reported by the people themselves and their relatives [ 47 ]. PREMs are therefore as much a descriptive tool for developing a typology of patient pathways and point out problem areas, as they are a tool for evaluating the quality of intervention of various actors in these pathways.…”

Section: Discussionmentioning

confidence: 99%

Collaborative research protocol to define patient-reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study

Bertrand

Fanchini

Rault

et al. 2022

Orphanet J Rare Dis

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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.

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Analyse du parcours de santé au cours des maladies neurologiques handicapantes et évolutives

Cited by 10 publications

References 22 publications

“De-novo” consultation: Evaluation of an outpatient's clinic dedicated to early diagnosis of parkinsonian syndromes

“De-novo” consultation: Evaluation of an outpatient's clinic dedicated to early diagnosis of parkinsonian syndromes

Neuroprotective Effects of a Variety of Pomegranate Juice Extracts against MPTP-Induced Cytotoxicity and Oxidative Stress in Human Primary Neurons

Collaborative research protocol to define patient-reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study

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