Search

Background: In recent decades, progress has been made in the care of people with polyhandicap/profound intellectual and multiple disabilities (PIMD) through a better understanding of the pathophysiology and the development of new care management and rehabilitation strategies adapted to these extreme pathologies. Although there is a lack of knowledge about the health status and care management of the oldest people, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow the optimisation of preventive and curative care management strategies. Few robust data on mortality and life expectancy have been documented for this population in France. Our aims are to estimate the median survival time and assess the factors associated with mortality in people with polyhandicap/PIMD receiving care in France. Methods: This study included people with polyhandicap/PIMD, followed by the French national cohort 'Eval‐PLH' since 2015. These individuals were included in specialised rehabilitation centres and residential institutions. The people included in the first wave of the cohort (2015–2016) were eligible for the present study. Vital status on 1 January 2022 (censoring date) was collected in two ways: (1) spontaneous reporting by the participating centre to the coordinating team and (2) systematic checking on the French national death platform. According to the vital status, survival was calculated in years from the date of birth to the date of death or from the date of birth to the censoring date. The factors associated with mortality were evaluated using the Cox proportional regression hazards model. Results: Data from 780 individuals aged between 3 and 67 years were analysed. At the censoring date, 176 (22.6%) had died, and the mean survival was 52.8 years (95% confidence interval: 51.1–54.5). Mortality was significantly associated with a progressive aetiology, recurrent pulmonary infections, drug‐resistant epilepsy and a higher number of medical devices. Conclusions: This study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France. Highlights: This study is the first to examine and estimate the median survival of people with polyhandicap/profound intellectual and multiple disabilities in France.Data from a national cohort include a large number of people with polyhandicap/profound intellectual and multiple disabilities.The first results from robust mortality data on people with polyhandicap/profound intellectual and multiple disabilities cared for in France.The instability of this disorder and the high number of medical devices are the main factors associated with earlier mortality in people with polyhandicap/profound intellectual and multiple disabilities. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to develop a conceptual framework to define a domain map describing the experience of patients with severe mental illnesses (SMIs) on the quality of mental health care. Methods: This study used an exploratory qualitative approach to examine the subjective experience of adult patients (18–65 years old) with SMIs, including schizophrenia (SZ), bipolar disorder (BD) and major depressive disorder (MDD). Participants were selected using a purposeful sampling method. Semistructured interviews were conducted with 37 psychiatric inpatients and outpatients recruited from the largest public hospital in southeastern France. Transcripts were subjected to an inductive analysis by using two complementary approaches (thematic analysis and computerized text analysis) to identify themes and subthemes. Results: Our analysis generated a conceptual model composed of 7 main themes, ranked from most important to least important as follows: interpersonal relationships, care environment, drug therapy, access and care coordination, respect and dignity, information and psychological care. The interpersonal relationships theme was divided into 3 subthemes: patient-staff relationships, relations with other patients and involvement of family and friends. All themes were spontaneously raised by respondents. Conclusion: This work provides a conceptual framework that will inform the subsequent development of a patient-reported experience measure to monitor and improve the performance of the mental health care system in France. The findings showed that patients with SMIs place an emphasis on the interpersonal component, which is one of the important predictors of therapeutic alliance. Trial registration: NCT02491866 [ABSTRACT FROM AUTHOR]

Background: Inappropriate drug prescribing causes preventable drug-related adverse events that result in increased morbidity and mortality, additional costs and diminished quality of life. Numerous initiatives have been launched to improve the quality of drug prescribing and safeguard the security of drug administration processes in nursing homes. Against the backdrop of implementation of telemedicine services, the focus of the present work is to evaluate the impact of a telemedication review carried out by a hospital physician and pharmacist as part of the telemedicine offer.Methods: The present study is a randomized controlled clinical trial. A total of 364 patients will be randomized into two groups: (1) an experimental group (182 patients) benefiting from a telemedication review using tele-expertise and (2) a control group (182 patients) receiving standard care. The primary endpoint will be rate of all-cause unplanned hospital admissions occurring within 3 months of randomization. The secondary endpoints will be rate of unplanned admissions at 6 months, patient quality of life, incidence of behavioral disturbances, number of falls, number of residents prescribed at least one inappropriate medication, nursing staff satisfaction, proposed medication reviews and their acceptability rate, characteristics of patients whose general practitioners have taken account of tele-expertise, efficacy of tele-expertise as compared to standard prescription and acceptability and satisfaction surveys of participating caregivers.Discussion: In the literature, various studies have investigated the utility of structured medication review processes, but outcome measures are heterogeneous, and results vary widely. Medication review can detect medication-related problems in many patients, but evidence of clinical impact is scant. Incremental cost-effectiveness ratios will be used to compare the cost and effectiveness of the experimental strategy and that of standard care. Our approach, involving the combination of an acceptability survey and a mixed-method (qualitative and quantitative) satisfaction survey, is particularly innovative. The results of this randomized trial are expected to confirm that medication review using tele-expertise has potential as a worthwhile care management strategy for nursing home residents.Trial Registration: Clinicaltrials.gov NCT03640845; registered August 21, 2018 (Clinicaltrials.gov NCT03640845). [ABSTRACT FROM AUTHOR]

Background: Obstetric anal sphincter injury is the most frequent cause of fecal incontinence (FI) in young women. However, the relationship between the extent of anal sphincter defects and the severity of long-term FI (at least 1 year after delivery) has been poorly studied. The aim of the present study was to determine if, in the long term, the extent of anal sphincter defects graded at anal endosonography was linked with the severity of FI. Methods: A retrospective study was conducted on women with a history of vaginal delivery, who presented with FI and had three-dimensional anorectal high-resolution manometry and endoanal ultrasound in our center from January 2015 to 2016. The detailed clinical history of each patient was obtained from the institutional database. The severity of FI was assessed with the Jorge and Wexner continence scale. Results: There were 250 women with a mean age of 60 ± 14 years. Seventy-six (30.4%) had an isolated defect of the internal anal sphincter, 21 (8.4%) had an isolated defect of the external anal sphincter, and 150 (60%) had both internal and external sphincter defects. The extent of IAS and EAS defects was proportionally correlated with the decrease in mean resting anal pressure (p < 0.01) and the decrease in mean squeeze pressure (p = 0.013) measured by 3DHRAM. No significant correlation was found between the extent and location of the defect (IAS, EAS or both) on endoanal ultrasound and the severity of FI. Menopause was the only independent factor significantly associated with the severity of FI. Conclusions: In our study, no significant correlation was observed between the extent of the anal sphincter defect and the severity of FI. Menopause was the only identified and independent risk factor for FI. These data confirm that, in the long-term, FI is often multifactorial. [ABSTRACT FROM AUTHOR]

Introduction: Hypercortisolism leads to severe clinical consequences persisting after the onset of remission. These physical sequelae of cortisol exposure are known to profoundly impact the patient’s quality of life. As psychological factors may be correlated with this quality of life, our objective was to determine the specific weight of psychological determinants of quality of life in patients in remission from hypercortisolism.Patients and methods: In an observational study, 63 patients with hypercortisolism in remission were asked to complete exhaustive self-administered questionnaires including quality of life (WHOQoL-BREF and Cushing QoL), depression, anxiety, self-esteem, body image, and coping scales. Multivariate analyses were performed. Psychological variables relevant to the model were: anxiety, depression, self-esteem, body image, and positive thinking dimension of the Brief-COPE. Cortisol deficiency was defined as a potential confounder.Results: The median time since remission was 3 years. Patients had significantly lower quality of life and body satisfaction score than the French population and patients with chronic diseases. Depression significantly impaired all WHOQoL and Cushing QoL domains. A low body satisfaction score significantly impaired social relationships quality of life score. In total, 42.9% of patients still needed working arrangements, 19% had disability or cessation of work.Conclusion: Patients in biological remission of hypercortisolism can rarely be considered as functionally cured: this is evidenced by altered quality of life, working arrangements, and chronic depression. A multidisciplinary management of these patients is thus mandatory on a long-term basis. [ABSTRACT FROM AUTHOR]

Background Three-dimensional high-resolution anorectal manometry (3 DHRAM), used for exploring anorectal disorders, was recently developed, providing interesting topographic data for the diagnosis of pelvic floor disorders such as excessive perineal descent. The aim of our study was to define a diagnostic strategy based on selected 3 DHRAM parameters to identify rectal intussusceptions ( RI), considering conventional defecography ( CD) as the gold standard. Methods All patients referred to our center in the previous 6 months for 3 DHRAM to explore fecal incontinence or constipation, and who previously achieved CD, were eligible. 3 DHRAM results were obtained for all classical parameters and the presence of a narrow band of high pressure in the anal canal during attempted defecation, which was recently found to be associated with RI in some studies. The sensitivity, specificity, and positive and negative predictive values were calculated for various 3 DHRAM criterion in order to propose a diagnostic strategy for RI. Key Results Twenty-six patients (66%) presented with RI on CD. On 3 DHRAM, according to our diagnostic strategy, the most relevant manometric criterion for the diagnosis of RI was the association of an anterior additional high-pressure area and an excessive perineal descent, with a positive predictive value of 100% [81.5-100], a specificity of 100% [75.3-100] and a sensibility of 69.2% [48.2-85.7]. Conclusions & Inferences In this study, 3 DHRAM was used to diagnose RI, and we confirmed its use in the diagnosis of pelvic floor disorders. Further studies will be necessary to define classifications for these new anatomic data from 3 DHRAM. [ABSTRACT FROM AUTHOR]

Patients with high-grade gliomas (HGG) and their caregivers have to confront a very aggressive disease that produces major lifestyle disruptions. There is an interest in studying the ability of patients and their caregivers to cope with the difficulties that affect quality of life (QoL). We examine, in a sample of patient-caregiver dyads in the specific context of newly diagnosed cases of HGG, whether the QoL of patients and caregivers is influenced by the coping processes they and their relatives use from a specific actor-partner interdependence model (APIM). This cross-sectional study involved 42 dyads with patients having recent diagnoses of HGG and assessed in the time-frame between diagnosis and treatment initiation. The self-reported data included QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology QoL), emotional status, and coping strategies (BriefCope). The APIM was used to test the dyadic effects of coping strategies on QoL. Coping strategies, such as social support, avoidance, and problem solving, exhibited evidence of either an actor effect (degree to which the individual's coping strategies are associated with their own QoL) or partner effect (degree to which the individual's coping strategies are associated with the QoL of the other member of the dyad) for patients or caregivers. For positive-thinking coping strategies, actor and partner effect were not observed. This study emphasizes that the QoL for patients and their caregivers was directly related to the coping strategies they used. This finding suggests that targeted interventions should be offered to help patients and their relatives to implement more effective coping strategies. [ABSTRACT FROM AUTHOR]

Aim Three-dimensional high-resolution anorectal manometry (3 DHRAM) is a new technique that can simultaneously provide physiological and topographical data on the terminal part of the digestive tract. Our object was to assess whether 3 DHRAM is able to reliably diagnose excessive perineal descent already diagnosed with conventional defaecography, which is considered to be the gold standard. Method All patients referred to our centre for anorectal manometry and conventional defaecography were evaluated with a maximum of 6 months between the two examinations. Anorectal manometry was performed using the 3 D High- Resolution Given Imaging® probe. Excessive perineal descent was defined as the downward movement of the anal high-pressure zone during straining. At the end of the straining effort, the high-pressure zone regained its initial position, thereby indicating that the probe had not moved. Results Nineteen female patients of median age 53 (21-70) years were included in the study. All cases with excessive perineal descent diagnosed using defaecography were visualized with 3 DHRAM. The degree of perineal descent determined by 3D and conventional defaecography was compared ( Spearman correlation 0.726, P = 0.01). In contrast, the averages measured were significantly different; the average was 11.68 ± 3.3 mm for 3 DHRAM but 34.21 ± 13.3 mm for conventional defaecography ( P = 0.002). Conclusion The results of the study demonstrate that 3 DHRAM can diagnose excessive perineal descent with the same degree of reliability as defaecography. Quantitative measures were not correlated, however, possibly because of methodological differences. The study confirms the value of the morphological data provided by 3 DHRAM. [ABSTRACT FROM AUTHOR]

Aim Our aim was to compare for the first time measurements obtained with water-perfused catheter anorectal manometry and three-dimensional (3 D) high-resolution manometry in patients with anorectal disorders. Method Consecutive patients referred to our centre for anorectal manometry ( ARM) were recruited to undergo the two procedures successively. Conventional manometry was carried out using a water-perfused catheter ( WPAM) and high-resolution manometry was achieved with a 3 D probe (3 DHRAM). For each procedure, parameters recorded included the following: anal canal length, resting pressure, squeeze pressure and rectal sensitivity. Results Two hundred and one patients were included in this study. The mean values for resting and squeeze pressures were correlated and found to be significantly higher when measured with 3 DHRAM than with WPAM. However, the length of the anal canal was not significantly different when measured by the two techniques without correlation between the two mean values obtained. The presence of the rectoanal inhibitory reflex was systematically assessed by both WPAM and 3 DHRAM and anismus was also systematically diagnosed by both WPAM and 3 DHRAM. Conclusion The pressure values obtained with 3 DHRAM are correlated with those measured with conventional manometry but are systematically higher. 3 DHRAM has the advantage of providing a pressure recording over the entire length and circumference of the anal canal, allowing a more useful physiological assessment of anorectal function. [ABSTRACT FROM AUTHOR]

Aim Three-dimensional high-resolution anorectal manometry (3D HRAM) is a new technique that can simultaneously provide physiological and topographical data. Our aim was to assess whether it can identify anal sphincter defects by comparing it with endoanal ultrasonography ( EUS) considered as the gold standard. Method An anal defect on 3D HRAM was defined as a continuous circumferential area over which the pressure was < 10 mmHg during the measurement of anal resting and voluntary contraction pressure. Inter-observer agreement was also assessed. Results A total of 100 patients (93 females) with a mean age of 53.5 ± 15.3 years were included. The positive diagnosis of an anal sphincter defect using 3D HRAM and EUS was in agreement (59.3%) ( κ = 0.419) of the time for the internal anal sphincter ( IAS) and (55.9%) ( κ = 0.461) for the external anal sphincter ( EAS). The inter-observer agreement for a diagnosis of an anal sphincter defect was (100%) ( κ = 0.937) for the IAS and (95%) ( κ = 0.751) for the EAS. The intra-class correlation coefficient for the extent of the defect was 0.853 for the IAS and 0.651 for the EAS. Conclusion The preliminary results demonstrate some level of agreement in the diagnosis of anal sphincter defects between 3D HRAM and EUS but insufficient for 3D HRAM to be adequately reliable using the criteria chosen. The excellent inter-observer agreement, however, demonstrates that 3D HRAM is reproducible and provides a new dimension for the evaluation of sphincter function. [ABSTRACT FROM AUTHOR]

Background and purpose Predictive factors of long-term disability in patients with relapsing-remitting multiple sclerosis ( RR- MS) are well known, but the weight of these factors does not explain the entire change of disability. Few studies have examined the predictive value of quality of life ( QoL). Objectives To determine the value of the initial level of QoL to predict changes in the disability status of patients with MS and to determine if specific- MS questionnaires predict more accuracy in these changes than generic questionnaires. Methods Design: multicenter, multi-regional, and longitudinal study. Main inclusion criteria: patients with RR- MS subtype and an Expanded Disability Status Scale ( EDSS) score lower than 7.0. Sociodemographic and clinical data were recorded at baseline. Every 6 months up to month 24, QoL ( MusiQoL and SF-36) was recorded. At 24 months, individuals were defined into two 'disability change' groups: the worsened and not worsened patients. Results Five-hundred and twenty-six patients were enrolled: 386 (83.7%) not worsened and 75 (16.3%) worsened patients at 24 months. The activity of daily living and the relationship with healthcare workers dimensions of MusiQoL questionnaire were independent predictors of change in the EDSS score after 24 months. The physical-functioning dimension of the SF-36 questionnaire predicted independently disability change after 24 months. Conclusions Patient-reported baseline QoL levels provide additional prognostic information on MS disability beyond traditional clinical or sociodemographic factors. These findings reinforce the importance of incorporating a patient's evaluation of their own QoL level during patient monitoring and the assessment of treatment effects. [ABSTRACT FROM AUTHOR]

Background: Preoperative diffusion-weighted MRI (DW-MRI) has been described as an efficient method to differentiate good and poor responders to chemotherapy in osteosarcoma patients. A DW-MRI performed earlier during treatment could be helpful in monitoring chemotherapy. Objective: To assess the accuracy of DW-MRI in evaluating response to chemotherapy in the treatment of osteosarcoma, more specifically at mid-course of treatment. Materials and methods: This study was carried out on a prospective series of adolescents treated for long-bone osteosarcoma. MR examinations were performed at diagnosis (MRI-1), at mid-course of chemotherapy (MRI-2), and immediately before surgery (MRI-3). A DW sequence was performed using diffusion gradients of b0 and b900. The apparent diffusion coefficients (ADC1, ADC2, ADC3, respectively), their differentials (ADC2 − ADC1 and ADC3 − ADC1), and their variation (ADC2 − ADC1/ADC1 and ADC3 − ADC1/ADC1) were calculated for each of these three time points. Results: Fifteen patients were included. Patients with no increase in ADC showed a poor response to chemotherapy on their histology results. At mid-course, the three calculated values were significantly different between good and poor responders. ADC2 − ADC1 enabled us to detect, with 100% specificity, four out of seven of the poor responders. There was no significant difference in the values at MRI-3 between the two groups. Conclusion: DW-MRI performed both at baseline and mid-course of neoadjuvant chemotherapy is an efficient method to predict further histological response of osteosarcoma. This method could be used as an early prognostic factor to monitor preoperative chemotherapy. [ABSTRACT FROM AUTHOR]

Beiske AG, Baumstarck K, Nilsen RM, Simeoni M-C. Validation of the multiple sclerosis international quality of life (MusiQoL) questionnaire in Norwegian patients. Acta Neurol Scand: 2012: 125: 171-179. © 2011 John Wiley & Sons A/S. Objectives - To assess the validity and reliability of the multidimensional, self-administered Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire, previously validated in a large international sample, in Norwegian patients. Patients and methods - Patients with different types and severities of multiple sclerosis (MS) were recruited from a single MS centre in Norway. All patients completed the MusiQoL and Short Form-36 (SF-36) QoL questionnaires at baseline and a mean of 21 (SD 7) days later. A neurologist collected sociodemographic, MS history and outcome data. Construct validity, internal consistency, reproducibility and external consistency were tested. Results - One hundred and four patients were evaluated. Construct validity was confirmed in terms of satisfactory item internal consistency correlations in eight of nine MusiQoL dimensions (Spearman's correlation: 0.34-0.79) and scaling success of item discriminant validity (75.0-100%). All dimensions of the MusiQoL questionnaire exhibited satisfactory internal consistency (Cronbach's alpha: 0.44-0.87) and reproducibility (intraclass correlation coefficients: 0.36-0.86). External validity testing showed that the global MusiQoL score correlated significantly with all but one individual SF-36 dimension score (Spearman's correlation: 0.29-0.56). Conclusions - These results demonstrate that the Norwegian-language version of the MusiQoL questionnaire is a valid and reliable instrument for assessing health-related QoL in Norwegian patients with MS. [ABSTRACT FROM AUTHOR]