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Background: Profound intellectual multiple disabilities or polyhandicap (PLH) is defined as a combination of profound mental retardation and serious motor deficits resulting in extreme dependence. Support for these patients is multidisciplinary, complex, and time-consuming. Thus, institutional health care workers (HCWs) face specific working conditions: frequent physical tasks, distressed families, and restricted feedback., Objectives: We aimed to identify determinants of quality of life (QoL) of HCWs and to study longitudinal evolution., Methods: The study used data from the French cohort EVAL-PLH. The participants were institutional HCWs of persons with PLH (age ≥ 3 years at the time of inclusion; age at onset of cerebral lesion <3 years old). Two populations were used: (1) cross sectional study: the sample 1 includes the HCWs assessed at T2 (2020-2021); (2) longitudinal study: the sample 2 includes the HCWs assessed at both T1 (2015-2016) and T2 (2020-2021). The data collected included: sociodemographics, health status, professional variables, and psycho-comportemental aspects. QoL was assessed using WHOQOL-BREF which provides 4 scores., Results: In comparison with French norms, the physical and social scores of QoL were significantly lower while the psychological score was significantly higher for (i) the 223 HCWs (participation rate 62%) assessed at T2 and (ii) the 61 HCWs assessed at T1 and T2. The main factors modulating QoL were age, marital status, self-perceived financial difficulties, personal chronic disease, anxiety-mood disorders, nature of coping strategies, and burnout., Conclusion: This study confirms the mixed (negative and positive) impact of caring persons with PLH on the institutional HCWs' QOL. Main determinants of the HCW's QOL were: older age, single status, perceived financial difficulties, altered health status, burn out and coping strategies. Clinical trial registration number : NCT02400528., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer HB declared a past co-authorship with the authors M-CR to the handling editor., (Copyright © 2024 Rousseau, Beltran, Hamouda, Aim, Felce, Lind, Khaldi, El Ouazzani, Auquier, Villemeur and Baumstarck.)

Background: Hospitalized children and young adults with polyhandicap (PLH) often present with behavioral and relational disorders that are mainly related to their difficulties in communicating and interacting with their environments. Educational support is rarely provided to these patients. An intensive multimodal educative program could help in reducing behavioral disorders and in improving the quality of life of healthcare workers, including nurses and auxiliary nurses., Methods: A multicenter, randomized controlled trial compared the impact of the usual practice of an educative program (1 h a week) to a multimodal intensive educative program (5 h a week) at 12 months. Patients aged 3-25 with PLH defined by the combination of five criteria (motor deficiency, severe-to-profound mental impairment, daily life dependence, restricted mobility, onset of cerebral lesion at younger than 3 years, and at least one behavioral disorder per week [withdrawn behavior, unexplained crying, teeth grinding, self-injury, aggression, stereotypy, or merycism]) were included. The primary outcome was the evolution of the predominant behavioral disorder between study inclusion and 12 months. Healthcare workers completed questionnaires about chronic stress, coping strategies, and quality of life at study inclusion and at 12 months., Results: Overall, 60 patients were included. Despite a tendency toward reduced teeth grinding, withdrawn and self-injury behaviors, the intervention was not significantly effective: The median duration of continuous behavioral disorders (stereotypy, unexplained crying, withdrawn behavior, and teeth grinding) did not differ between groups. The median frequency of the discontinuous behavioral disorders (self-injury) did not differ between groups. Considering each disorder separately, there was a decrease in teeth grinding, self-injury, and autistic-like traits in the intervention group, although it did not reach statistical significance. This study also suggested decreased depersonalization feelings by healthcare workers., Conclusion: Although the study did not show a significant reduction in behavioral disorders in patients with PLH, these results encourage further evaluation of educational management, particularly in regard to patients with self-injury and with withdrawn and teeth-grinding behaviors., Competing Interests: Conflicts of interest None., (Copyright © 2022 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.)

Background: Transplantation is a saving therapeutic that has heavy consequences. The quality of life (QoL) of transplanted children and their parents has been little studied and should help physicians better manage these patients. The objectives of the study were to assess: (1) the QoL of transplanted children and parents and compare it with that of children with other chronic conditions associated with long-term consequences, and (2) potential variables modulating the QoL., Methods: This cross-sectional study was performed in a multidisciplinary paediatric unit (Timone Hospital, Marseille, France). Children were less than 18 years old; had a liver, kidney or heart transplant; and had a time since transplantation of 1-10 years. Socio-demographics and clinical data were recorded from medical forms. The QoL was assessed using the VSP-A (Vécu et Santé Perçue de l'Adolescent et de l'Enfant) and the WhoQoL self-reported questionnaires., Results: Forty-five families were included (response rate: 76%). The transplanted organs were the liver for 20 children, the kidney for 15 children, and the heart for 10 children. The QoL of transplanted children reported by their parents was better than that of children with inborn errors of metabolism and similar to that of childhood leukaemia survivors. The QoL of parents of transplanted children was better than that of parents of children with inborn errors of metabolism and did not differ from French norms. The QoL did not differ according to the nature of the transplanted organ, sex or the main sociodemographic data. The main modulators decreasing QoL were residual treatment level, medications switch and the presence of another regular treatment., Conclusion: Transplanted children and their families reported a fairly preserved QoL compared to children with other chronic health conditions. Special attention should be given to QoL modulators related to therapeutic management (medication switches, regular treatments) that might be amenable to improve the QoL. Trial registration Ethics committee of Aix-Marseille University, France (reference number: 2014-08-04-03, 24/4/2015; https://www.univ-amu.fr/fr/public/comite-dethique )., (© 2021. The Author(s).)

Background: The short-term and long-term consequences of the most frequent painful procedures performed in the ICU are unclear. This study aimed to identify the risk factors associated with pain-related discomfort perceived by critically ill patients during the whole ICU stay as self-reported by patients at the end of their ICU stay., Methods: The study involved 34 ICUs. Adult patients who survived an ICU stay of 3 calendar days or more were eligible for inclusion. Discomforts, including the pain-related discomfort, were assessed using the French 18-item questionnaire on discomfort in ICU patients, the "Inconforts des Patients de REAnimation" (IPREA). Patients scored each item from 0 (minimal discomfort) to 10 (maximal discomfort). Associations between patient characteristics at ICU admission, life support therapies and main potentially painful procedures performed during the ICU stay and pain-related discomfort scores assessed at the end of the ICU stay were analyzed., Results: Patients with complete IPREA questionnaires (n = 2130) were included. The median pain-related discomfort score was 3 (IQR 0-5). From the univariate analysis, pain-related discomfort scores were negatively correlated with age and positively correlated with ICU stay duration; surgical patients reported significant higher pain-related discomfort scores than medical patients; chest drain insertion, chest drain removal, use of bladder catheter, central venous catheter (CVC) insertion, complex dressing change, and intra-hospital transport were associated with pain-related discomfort scores. From the multivariate analyses using generalized estimating equations models, only age, chest drain removal, use of a bladder catheter, CVC insertion, and intra-hospital transport were the main risk factors associated with pain-related discomfort scores., Conclusion: Patients who underwent chest drain removal, bladder catheter, CVC insertion, and intra-hospital transport during their ICU stay reported higher pain-related discomfort scores (with respect to the whole ICU stay and assessed at the end of their ICU stay) than patients who did not experience these events. This study may pave the way for further targeted studies aiming at investigating a causal link between these common procedures in the ICU and adult critically ill patients' perceptions of their ICU stay regarding recalled pain., Trial Registration: Clinicaltrials.gov Identifier NCT02442934, retrospectively registered on May 13, 2015.

Purpose: This pilot study describes the socio-professional development and quality of life of young adults with Asperger syndrome in France. Methods: Those young adults, between 18 and 30 years old, receiving care in a child psychiatry department for autistic spectrum disorder, were requested to respond to the Ad Hoc, World Health Organization Quality Of Life - Bref and Copenhagen psychosocial questionnaires regarding their socio-professional background and feelings about their future. Results: Of the 79 eligible subjects, 24 were selected to participate in our study. Their average age at the time of the pilot study was 22.2 years (standard deviation 3.4 years), and their average age when they were diagnosed was 17.5 years (standard deviation 3.7 years.). There were 54% who reported a psychiatric comorbidity anxiety disorder. Half stated they had completed secondary school and benefitted from being professionally employed. During this study, only six were employed, while the others remained financially dependent on their parents. The group's quality of life self-assessment scores were significantly lower compared to the French general population in overall psychology (43.6 versus 68.7) and social relationships (48.9 versus 76.5). However, the study's participants perceived work as an important means to their personal development. Hence, in order to cope with their difficulties, they hoped to benefit from customized support adapted to their autistic disorder and for their workplace colleagues to be better informed about Asperger syndrome. Conclusions : Our results are in line with international data. Additional studies need to be done in order to determine socio-professional integration factors and, in particular, the integration of potential contributions by occupational health departments with those social and medical teams supporting these young adults.Implications for rehabilitationYoung adults with Asperger syndrome benefit from the support of their family in determining their professional goals.Support may be required to enhance social and communicative abilities to help integration.Employees would benefit from information on the syndrome and how best to support.

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).

Background: The use of artificial nutrition, defined as a medical treatment that allows a non-oral mechanical feeding, for cancer patients with limited life expectancy is deemed nonbeneficial. High-quality evidence about the use of artificial nutrition near the end of life is lacking. This study aimed (a) to quantify the use of artificial nutrition near the end-of-life, and (b) to identify the factors associated with the use of artificial nutrition., Methods: This was a retrospective cohort study of decedents based on data from the French national hospital database. The study population included adult cancer patients who died in hospitals in France between 2013 and 2016 and defined to be in a palliative condition. Use of artificial nutrition during the last 7 days before death was the primary endpoint., Results: A total of 398 822 patients were included. The median duration of the last hospital stay was 10 (interquartile range, 4-21) days. The artificial nutrition was used for 11 723 (2.9%) during the last 7 days before death. Being a man, younger, having digestive cancers, metastasis, comorbidities, malnutrition, absence of dementia, and palliative care use were the main factors associated to the use of artificial nutrition., Conclusion: This study indicates that the use of artificial nutrition near the end of life is in keeping with current clinical guidelines. The identification of factors associated with the use of artificial nutrition, such as cancer localization, presence of comorbidities or specific symptoms, may help to better manage its use., (© 2019 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Background and Aims: Patients with age -related hearing loss (ARHL) and their natural caregivers have to confront a disability that produces progressive lifestyle changes. There is an interest in studying the ability of patients and their caregivers to cope with the difficulties that affect quality of life (QoL). In a sample of patient-caregiver dyads in the specific context of ARHL, we examine whether the QoL of patients and caregivers is influenced by the coping processes they use from a specific actor-partner interdependence model (APIM)., Methods: This cross-sectional study involved dyads with patients having a diagnosis of ARHL. The self-reported data included QoL (WHOQoL-BREF) and coping strategies (BriefCope). The APIM was used to test the dyadic effects of coping strategies on QoL., Results: A total of 448 dyads were included; the patients and caregivers were love partners for 59% of the dyads. Coping strategies, such as social support, avoidance, problem solving, and positive thinking, exhibited evidence of actor effects (degree to which the individual's coping strategies are associated with their own QoL). Effects on the partner (degree to which the individual's coping strategies are associated with the QoL of the other member of the dyad) were found, i.e., when the patients mobilized their coping strategy based on social support and problem-solving, their caregivers reported higher environmental QoL., Conclusion: 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.

Background: Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL., Method: We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected., Results: The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL., Conclusions: Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions., Competing Interests: The authors have declared that no competing interests exist.

Aim: The aim of this paper is to assess the relationships between psycho-behavioral determinants and quality of life in individuals with age-related hearing loss., Methods: This is a cross-sectional study performed in a French preventive health center, Marseille, France (Institut Régional d'Information et de Prévention de la Sénescence). The patients had a bilateral (mild to moderately severe) age-related hearing loss. Data collected included : sociodemographics, general health information, quality of life (Hearing Handicap Inventory for the Elderly and World Health Organization Quality of Life questionnaire), emotional status (anxiety and mood disorders), emotional intelligence (Trait Emotional Intelligence Questionnaire Short Form), and coping strategies (Brief Coping Orientation to Problems Experienced Scale)., Results: Quality of life was linked to psycho-behavioral factors, such as emotional status, emotional intelligence, and coping strategies., Conclusions: These findings would assist health authorities and clinicians in choosing targeted appropriate interventions to improve quality of life of age related hearing loss individuals.

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.

Background: Among a sample of patient-informal caregiver dyads in the specific context of new diagnoses of high-grade glioma in the time-frame between diagnosis and the third month following diagnosis, we examine whether the coping strategies implemented by the patients and their caregivers influenced their own quality of life (QoL) and the QoL of their relatives., Methods: Thirty-eight dyads with patients having recent diagnoses of high-grade glioma were involved in this longitudinal study. The self-reported data include QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology Quality of Life), and coping strategies (BriefCope). Data were collected at T1 corresponding to the time-frame between diagnosis and postsurgical treatment initiation and T2 corresponding to the 3-month post-inclusion follow-up., Results: Coping strategies based on social support and avoidance were the least used at baseline and the 3-month follow-up, both for patients and caregivers. At the 3-month follow-up, the use of social support at baseline was significantly related to lower scores of QoL for the patients and with higher QoL for the caregivers. For the patient, the use of problem-solving or positive thinking at baseline was not related to his/her QoL, while it was related to more satisfactory QoL scores for the caregiver. The use of avoidance at baseline was linked to a higher 3-month QoL for the patients and a lower 3-month QoL for the caregivers. Using the specific dyadic analyses (actor-partner interdependence model), the 3-month patient's QoL was lower (β = - 0.322; p = 0.03) when the patient mobilized the social support strategy at baseline, but was higher(β = 0.631; p < 10 - 3 ) when his/her informal caregiver used this strategy. After adjustment for sex, age, and baseline PGI score, the link between high use of the social support strategy at baseline by the caregiver and the patient's 3-month QoL, remained present (positive partner effect; β =0.675; p < 10 - 3 )., Conclusion: The QoL for patients and their informal caregivers since the time of diagnosis is directly related to the use of coping strategies based on social support at time of diagnosis.

Objective: Quality of life (QoL) is still assessed using paper-based and fixed-length questionnaires, which is one reason why QoL measurements have not been routinely implemented in clinical practice. Providing new QoL measures that combine computer technology with modern measurement theory may enhance their clinical use. The aim of this study was to develop a QoL multidimensional computerized adaptive test (MCAT), the SQoL-MCAT, from the fixed-length SQoL questionnaire for patients with schizophrenia., Methods: In this multicentre cross-sectional study, we collected sociodemographic information, clinical characteristics (i.e., duration of illness, the PANSS, and the Calgary Depression Scale), and quality of life (i.e., SQoL). The development of the SQoL-CAT was divided into three stages: (1) multidimensional item response theory (MIRT) analysis, (2) multidimensional computerized adaptive test (MCAT) simulations with analyses of accuracy and precision, and (3) external validity., Results: Five hundred and seventeen patients participated in this study. The MIRT analysis found that all items displayed good fit with the multidimensional graded response model, with satisfactory reliability for each dimension. The SQoL-MCAT was 39% shorter than the fixed-length SQoL questionnaire and had satisfactory accuracy (levels of correlation >0.9) and precision (standard error of measurement <0.55 and root mean square error <0.3). External validity was confirmed via correlations between the SQoL-MCAT dimension scores and symptomatology scores., Conclusion: The SQoL-MCAT is the first computerized adaptive QoL questionnaire for patients with schizophrenia. Tailored for patient characteristics and significantly shorter than the paper-based version, the SQoL-MCAT may improve the feasibility of assessing QoL in clinical practice.

Background: Studies have suggested that clinicians do not feel comfortable with the interpretation of symptom severity, functional status, and quality of life (QoL). Implementation strategies of these types of measurements in clinical practice imply that consensual norms and guidelines regarding data interpretation are available. The aim of this study was to define subgroups of patients according to the levels of symptom severity using a method of interpretable clustering that uses unsupervised binary trees., Methods: The patients were classified using a top-down hierarchical method: Clustering using Unsupervised Binary Trees (CUBT). We considered a three-group structure: "high", "moderate", and "low" level of symptom severity. The clustering tree was based on three stages using the 9-symptom scale scores of the EORTC QLQ-C30: a maximal tree was first developed by applying a recursive partitioning algorithm; the tree was then pruned using a criterion of minimal dissimilarity; finally, the most similar clusters were joined together. Inter-cluster comparisons were performed to test the sample partition and QoL data., Results: Two hundred thirty-five patients with different types of cancer were included. The three-cluster structure classified 143 patients with "low", 46 with "moderate", and 46 with "high" levels of symptom severity. This partition was explained by cut-off values on Fatigue and Appetite Loss scores. The three clusters consistently differentiated patients based on the clinical characteristics and QoL outcomes., Conclusion: Our study suggests that CUBT is relevant to define the levels of symptom severity in cancer. This finding may have important implications for helping clinicians to interpret symptom profiles in clinical practice, to identify individuals at risk for poorer outcomes and implement targeted interventions.

Purpose: Critically ill patients are exposed to stressful conditions and experience several discomforts. The primary objective was to assess whether a tailored multicomponent program is effective for reducing self-perceived discomfort., Methods: In a cluster-randomized two-arm parallel trial, 34 French adult intensive care units (ICUs) without planned interventions to reduce discomfort were randomized, 17 to the arm including a 6-month period of program implementation followed by a 6-month period without the program (experimental group), and 17 to the arm with an inversed sequence (control group). The tailored multicomponent program consisted of assessment of ICU-related self-perceived discomforts, immediate and monthly feedback to healthcare teams, and site-specific tailored interventions. The primary outcome was the overall discomfort score derived from the 16-item IPREA questionnaire (0, minimal, 100, maximal overall discomfort) and the secondary outcomes were the discomfort scores of each IPREA item. IPREA was administered on the day of ICU discharge with a considered timeframe from the ICU admission until ICU discharge., Results: During a 1-month assessment period, 398 and 360 patients were included in the experimental group and the control group, respectively. The difference (experimental minus control) of the overall discomfort score between groups was - 7.00 (95% CI - 9.89 to - 4.11, p < 0.001). After adjustment (age, gender, ICU duration, mechanical ventilation duration, and type of admission), the program effect was still positive for the overall discomfort score (difference - 6.35, SE 1.23, p < 0.001) and for 12 out of 16 items., Conclusions: This tailored multicomponent program decreased self-perceived discomfort in adult critically ill patients., Trial Registration: Clinicaltrials.gov Identifier NCT02442934.

Introduction  Quantify quality of life (QoL) outcomes in gastroschisis children is little assessed. The primary objective was to describe the long-term outcome of newborns with gastroschisis treated in three tertiary care hospitals of France in terms of neurodevelopment and QoL. Materials and Methods  The study reported was a cross-sectional, descriptive multicentric retrospective study assessing the outcome of newborns with gastroschisis, born between January 1, 2009, and December 31, 2014, treated at two large and French level III neonatal intensive care units. Long-term outcome data were assessed by questionnaires sent to the infants' parents. Questionnaires explored global health, neurological development, and quality of life (overall assessment including socio-economic and medical), Age & Stages Questionnaire, infants' quality of life (KIDSCREEN), and quality of parents' life (General Questionnaire Short Form-36). Results  In this study, 50% of the survivor's families answered the assessment form ( n  = 33). The average follow-up age was 40 months, ranging from 8 months to 6 years. Cases of simple gastroschisis more often had a normal score for "communication" ( p  = 0.033), while patients who received morphine for a longer duration had significantly lower scores for the items "communication" and "problem resolving" ( p  = 0.024 and p  = 0.011, respectively). Children's QoL was significantly lower for patients with gestational age younger than 36 weeks ( p  = 0.023) and for patients born following "fetal cause delivery" ( p  = 0.022). Parents had a significantly higher physical composite score if their child underwent primary closure ( p  = 0.012). Conclusion  Our analyses confirm the idea that cases of complex gastroschisis and preterm delivery may lead to poorer outcome. Such hindsight (40 months in mean) allowed for an interesting assessment of development long after the patient's initial hospitalization and to confirm these results, a standardized neuropsychological evaluation of patients should be done when at least 6 years old. An accurate assessment of the social environment and its impact on the development and QoL of children will be fundamental to avoid selection bias., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart · New York.)

Aim: Individuals with severe and complex disabilities, defined by a combination of profound intellectual impairment and serious motor deficit resulting in extreme dependence, often remain in hospital or at residential facilities. The aim of this study was to identify the determinants of quality of life (QoL) of 238 health care workers (HCWs) caring for individuals with severe and complex disabilities., Method: We conducted a cross-sectional study. The recruitment of the HCWs was performed in five French centres specializing in patients with severe and complex disabilities. The selection criteria were age above 18 years, being an institutional referent HCW (a resource person coordinating various issues for or about the patient), and agreeing to participate. Sociodemographic, health, professional variables, and psycho-behavioural (QoL, burn-out, and coping strategies) data were collected., Results: Of the 362 eligible HCWs, 65.7% returned the questionnaires. The scores of the physical and social dimensions of QoL were significantly lower, and the score of the psychological dimension significantly higher, than those of a comparison group. The main factors modulating QoL were age, financial difficulties, nature of coping strategy, and burn-out., Interpretation: This research provides preliminary evidence that caring for patients with severe and complex disabilities affects the QoL of HCWs. These results support the need for optimization of the work environments for HCWs., (© 2017 Mac Keith Press.)

Background: The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments., Methods: The study employed a cross-sectional design including cancer patients who were going to receive chemotherapy treatment and their caregivers. Quality of life was assessed using condition-specific questionnaires (EORTC QLQ-C30 and CarGOQoL), generic health-related questionnaire (SF-36), and open individualized measure (SEIQoL)., Results: The final sample included 205 patient-caregiver dyads. From the SEIQoL, Family, Health, and Leisures were the most freely expressed QoL domains by patients and caregivers, but reported with different weights. Love life and financial issues were less spontaneously mentioned. The SEIQoL index was moderately correlated to the condition-specific QoL questionnaires (R lower than |0.40|) and to SF-36 (correlation coefficients: R ranging from 0.17 to 0.31)., Conclusion: Individualized QoL measures allow individuals to spontaneously express important, non-predefined domains. This study highlights the need to explore QoL using a combination of individualized questionnaires and standardized questionnaires, capturing complementary facets that patients consider important in their life.

Background: The aims of this study were to report nutritional status in a large panel of patients with cancer requiring exclusive chemotherapy and to study the influence of nutritional status on their quality of life (QoL)., Methods: This work was a longitudinal cohort study performed at a French university teaching hospital. Eligible patients were individuals with a cancer needing treatment based on exclusive chemotherapy. Three work-ups were performed: i) before the administration of the first course of chemotherapy: T1, ii) before the administration of the second (for patients with 3 planned courses) or third (patients with 6 planned courses) course: T2, and iii) before the administration of the last planned course: T3. The following data were collected: general health (performance status) and nutritional status (weight, anorexia grading, albuminemia, pre-albuminemia, and C-reactive protein) and QoL., Results: The nutritional status of patients with cancer was preserved. Functional impairment, the presence of anorexia, the palliative nature of the chemotherapy, and an elevated C-reactive protein dosage were independent predictive factors of a lower QoL among patients assessed at the end of chemotherapy., Conclusions: Although larger studies should corroborate these findings, clinicians may include this information in the management of patients with cancer requiring exclusive chemotherapy to identify the most vulnerable patients., Trial Registration: Current controlled trials NCT01687335 (registration date: October 6, 2011).

Objective: Patients with major depressive disorder (MDD) and their natural caregivers experience major lifestyle difficulties. Little is known concerning dyadic (i.e., patient and natural caregiver) characteristics' impact on quality of life. In a sample of depressed patient-caregiver dyads, we examined quality of life (QoL) levels compared with the general population and whether QoL is influenced by emotional intelligence (EI) and coping strategies using the actor-partner interdependence model (APIM)., Methods: This cross-sectional study involved 79 patient-caregiver dyads. The self-reported data, completed by patients and their primary caregivers, included QoL (SF-36), EI (TEIQue-SF) and coping strategies (BriefCope). The QoL of patients and caregivers was compared with 158 French age-sex-matched healthy controls. The dyadic interactions were analyzed using structural equation modeling., Results: Patients and their caregivers experienced lower QoL levels than French age-sex-matched controls. The EI findings showed actor (degree to which the person's EI was associated with his/her own QoL) and partner (degree to which the person's EI was associated with QoL of the other member of the dyad) effects for patients and caregivers. The coping strategies (i.e., problem solving, positive thinking, avoidance and social support) revealed only actor effects., Conclusion: QoL is seriously impaired in depressed patients and their primary caregivers and is associated with EI and coping strategies. Targeted interventions focusing on EI and coping strategies could be offered to improve QoL in dyads., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: The Brief Coping Orientation to Problems Experienced (Brief COPE) inventory is the most usual measure to identify the nature of coping strategies implemented by individuals and explore 14 coping strategies. The availability of a structure with fewer factors rather than the initial 14-factor structure may be of interest for both healthcare professionals and researchers. We report the validation process of a 4-factor structure of the French version of the Brief COPE in a French sample of individuals facing a singular life event, such as cancer, including patients and their caregivers., Methods: The cross-sectional study included cancer patients and their caregivers. Self-administered data were collected including: socio-demographic (age, gender, marital status, employment status, and education level), coping strategies using the French version of the Brief COPE, quality of life (QoL) using the French version of the short form health survey questionnaire (SF36). Construct validity, internal consistency, reliability, and external validity were tested., Results: The sample included 398 individuals. The principal component factor analysis identified a 4-factor structure. The dimensions were labeled according to their constitutive items: social support (8 items), problem solving (4), avoidance (10), and positive thinking (6). The 4-factor structure was supported by different theoretical models of coping and showed satisfactory psychometric properties., Conclusion: The 4-factor structure of the French version of the Brief COPE, validated in a sample of individuals facing a singular stressful event, including cancer patients and their caregivers, makes the instrument easier to use both in clinical practice and clinical research.

Background: To enhance the use of quality of life (QoL) measures in clinical practice, it is pertinent to help clinicians interpret QoL scores., Objective: The aim of this study was to define clusters of QoL levels from a specific questionnaire (MusiQoL) for multiple sclerosis (MS) patients using a new method of interpretable clustering based on unsupervised binary trees and to test the validity regarding clinical and functional outcomes., Methods: In this international, multicenter, cross-sectional study, patients with MS were classified using a hierarchical top-down method of Clustering using Unsupervised Binary Trees. The clustering tree was built using the 9 dimension scores of the MusiQoL in 2 stages, growing and tree reduction (pruning and joining). A 3-group structure was considered, as follows: "high," "moderate," and "low" QoL levels. Clinical and QoL data were compared between the 3 clusters., Results: A total of 1361 patients were analyzed: 87 were classified with "low," 1173 with "moderate," and 101 with "high" QoL levels. The clustering showed satisfactory properties, including repeatability (using bootstrap) and discriminancy (using factor analysis). The 3 clusters consistently differentiated patients based on sociodemographic and clinical characteristics, and the QoL scores were assessed using a generic questionnaire, ensuring the clinical validity of the clustering., Conclusions: The study suggests that Clustering using Unsupervised Binary Trees is an original, innovative, and relevant classification method to define clusters of QoL levels in MS patients.

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.

Background: The CareGiver Oncology Quality of Life (CarGOQoL) questionnaire, a 29-item, multidimensional, self-administered questionnaire, was validated using a large French sample. We reported the linguistic validation process and the metric validity of the English version of CarGOQoL in the United- States., Methods: The translation process consisted of 3 consecutive steps: forward-backward translation, acceptability testing, and cognitive interviews. The psychometric testing was applied to caregivers of consecutive patients with representative cancers who were recruited from the Regional Cancer Center in northwestern Pennsylvania. All individuals completed the CarGOQoL at baseline, day- 30, and day- 90. Internal consistency, reliability, external validity, reproducibility, and sensitivity to change were tested., Results: The translated version was validated on a total of 87 American cancer caregivers. The dimensions of the CarGOQoL generally demonstrated a high internal consistency (Cronbach's alpha > 0.70 for all but four domain scores). External validity testing revealed that the CarGOQoL index score correlated significantly with all SF-36 dimension scores except the physical composite score (Pearson's correlation: 0.28-0.70). Reproducibility was satisfactory at day- 30 (intraclass correlation coefficient: 0.46-0.94) and day- 90 (0.43-0.92). Four specific dimensions of CarGOQoL showed responsiveness: the Psychological well-being, the Relationships with health care system, the Social support and the Finances., Conclusions: The American version of the CarGOQoL constitutes a useful instrument to measure QoL in caregivers of cancer patients in the United- States.

The aim was to develop a multidimensional computerized adaptive short-form questionnaire, the MusiQoL-MCAT, from a fixed-length QoL questionnaire for multiple sclerosis.A total of 1992 patients were enrolled in this international cross-sectional study. The development of the MusiQoL-MCAT was based on the assessment of between-items MIRT model fit followed by real-data simulations. The MCAT algorithm was based on Bayesian maximum a posteriori estimation of latent traits and Kullback-Leibler information item selection. We examined several simulations based on a fixed number of items. Accuracy was assessed using correlations (r) between initial IRT scores and MCAT scores. Precision was assessed using the standard error measurement (SEM) and the root mean square error (RMSE).The multidimensional graded response model was used to estimate item parameters and IRT scores. Among the MCAT simulations, the 16-item version of the MusiQoL-MCAT was selected because the accuracy and precision became stable with 16 items with satisfactory levels (r ≥ 0.9, SEM ≤ 0.55, and RMSE ≤ 0.3). External validity of the MusiQoL-MCAT was satisfactory.The MusiQoL-MCAT presents satisfactory properties and can individually tailor QoL assessment to each patient, making it less burdensome to patients and better adapted for use in clinical practice., Competing Interests: The authors have no conflicts of interest to disclose.

Objective: While radioiodine therapy is commonly used for treating Graves' disease, a prolonged and clinical hypothyroidism may result in disabling symptoms leading to deterioration of quality of life (QoL) of patients. Introducing levothyroxine (LT4) treatment in the early post-therapeutic period may be an interesting approach to limit this phenomenon., Methods: A multicenter, prospective, open-label randomized controlled trial enrolled 94 patients with Graves' hyperthyroidism randomly assigned to the experimental group (n=46) (group A: early prophylactic LT4 treatment) or the control group (n=48) (group B: standard follow-up). The primary endpoint was the 6-month QoL. The secondary endpoints were other QoL scores such as Graves' ophthalmopathy (GO) outcomes, thyroid function tests and safety., Results: The primary endpoint at 6 months was achieved: the mental composite score (MCS) of Short Form 36 (SF-36) was significantly higher in group A compared to group B (P=0.009). Four other dimension scores of the SF-36 and four dimension scores of the thyroid-specific patient-reported outcome (ThyPRO) significantly differed between the two groups, indicating better QoL in group A. After adjustment for variables, the early LT4 administration strategy was found as an independent factor for only two scores of SF-36: the MCS and the general health (GH) score. There were no differences in GO, final thyroid status and changes in the anti-TSH receptor antibodies (TRAbs) levels between the two groups. No adverse cardiovascular event was reported., Conclusion: Early LT4 administration post-radioactive iodine (RAI) could represent a safe potential benefit for patients with regard to QoL. The optimal strategy taking into account administered RAI activities and LT4 treatment dosage and timing remains to be determined., (© 2016 European Society of Endocrinology.)

Purpose: Functional outcomes in schizophrenia may be more closely related to social cognition than to neurocognition; however, the extent to which social cognition influences quality of life (QoL) remains unclear. We conducted a cross-sectional survey study of the impact of patients' and clinicians' subjective perceptions of neurocognitive and social cognitive deficits on quality of life., Methods: The study included 253 patients with schizophrenia and their clinicians from public mental health clinics in Bolivia, Chile, and Peru. We utilized the GEOPTE Scale of Social Cognition for Psychosis, the Schizophrenia Quality of Life Questionnaire, and the Positive and Negative Syndrome Scale for schizophrenia., Results: Patients' subjective perceptions of their neurocognitive deficits (B = -1.13; CI -1.56 to -0.70) were significantly associated with QoL, whereas there was no independent association between the clinicians' ratings of the patients' neurocognitive deficits and QoL (B = -0.33; CI -0.98 to 0.31). However, patients' subjective perceptions of their neurocognitive deficits were no longer associated with QoL (B = -0.23; CI -0.71 to 0.24) once their perceptions of social cognitive impairments were accounted for (B = -1.03; CI -1.39 to -0.68)., Conclusion: Patients' perceptions of their social cognitive function (but not neurocognitive functioning) have a significant impact on their QoL. Clinicians' ratings of patients' cognitive deficits were only weakly correlated with patients' subjective perceptions of their own neurocognitive, suggesting a mismatch between clinician and patient assessments of such deficits. Closer attention should therefore be paid toward patients' perception of their own deficits by clinicians in order to improve QoL.

Objective: The aim of this study was to identify potential socio-demographic and socio-economic determinants associated with quality of life (QoL) in impoverished individuals admitted in emergency departments (EDs) using a self-administered multidimensional poverty-related QoL questionnaire (PQoL) and a generic QoL questionnaire (Duke)., Design: cross-sectional study., Setting: Ten EDs in France., Participants: All participants included in this study lived in impoverished conditions., Intervention and Outcome Measures: We collected socio-demographic information, economic data, and data related to the ED visit. Multiple linear regressions were performed to determine which variables were linked to QoL scores., Results: Three-hundred and eighty-seven individuals were enrolled, and 378 (98%) responded to the QoL questionnaires. PQoL was significantly lower for single individuals (β from -0.15 to -0.23), without a stable home (β from -0.17 to -0.34) and individuals without general health coverage (β = 0.20). Compared with men, women reported lower scores in the psychological well-being dimension (β = -0.19) and higher scores in the relationships with friends dimension (β = 0.17)., Conclusions: Not having stable housing was the most important factor associated with low QoL in impoverished people. This finding demonstrates the need for support from policymakers at the national and local levels for these vulnerable populations., (© The Author 2015. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.)

Objective: Quality of life (QoL) measurements are considered important outcome measures both for research on multiple sclerosis (MS) and in clinical practice. Computerized adaptive testing (CAT) can improve the precision of measurements made using QoL instruments while reducing the burden of testing on patients. Moreover, a cross-cultural approach is also necessary to guarantee the wide applicability of CAT. The aim of this preliminary study was to develop a calibrated item bank that is available in multiple languages and measures QoL related to mental health by combining one generic (SF-36) and one disease-specific questionnaire (MusiQoL)., Methods: Patients with MS were enrolled in this international, multicenter, cross-sectional study. The psychometric properties of the item bank were based on classical test and item response theories and approaches, including the evaluation of unidimensionality, item response theory model fitting, and analyses of differential item functioning (DIF). Convergent and discriminant validities of the item bank were examined according to socio-demographic, clinical, and QoL features., Results: A total of 1992 patients with MS and from 15 countries were enrolled in this study to calibrate the 22-item bank developed in this study. The strict monotonicity of the Cronbach's alpha curve, the high eigenvalue ratio estimator (5.50), and the adequate CFA model fit (RMSEA = 0.07 and CFI = 0.95) indicated that a strong assumption of unidimensionality was warranted. The infit mean square statistic ranged from 0.76 to 1.27, indicating a satisfactory item fit. DIF analyses revealed no item biases across geographical areas, confirming the cross-cultural equivalence of the item bank. External validity testing revealed that the item bank scores correlated significantly with QoL scores but also showed discriminant validity for socio-demographic and clinical characteristics., Conclusion: This work demonstrated satisfactory psychometric characteristics for a QoL item bank for MS in multiple languages. This work may offer a common measure for the assessment of QoL in different cultural contexts and for international studies conducted on MS.

Background: Improved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions. We performed a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential predictive factors of QoL changes over time., Method: This is a study performed over a 6-year period in patients with a LIS diagnosis. Questionnaires were sent in 2007 and 2013. The following data were recorded: i) sociodemographic data; ii) clinical data related to LIS, physical/handicap status, psychological status; iii) self-reported QoL: Anamnestic Comparative Self-Assessment (ACSA); iv) Integration in life: French Reintegration to Normal Living Index (RNLI)., Results: Among the 67 patients included in 2007, 39 (58 %) patients returned their questionnaire in 2013. The LIS etiology was stroke in 51 individuals. The QoL of the patients was relatively satisfactory compared to populations in other severe conditions. Twenty-one (70 %) individuals reported a stable/improved QoL between 2007 and 2013. The physical/handicap statuses in 2007 and 2013 were not related to the QoL 6 years later, with the exception of one communication parameter: the individuals who used yes-no code reported significantly lower QoL levels than those who did not in 2013., Discussion: In opposition to a widespread opinion, LIS persons report a relatively satisfactory QoL level that stays stable over time, suggesting that life with LIS is worth living. Preservation of autonomy and communication may help them to live as normal life as possible.

Background: Interpretation of quality of life (QoL) scores over time can be difficult because of possible changes in internal standards, values, and conceptualization of QoL by individuals. This effect is called a response shift (RS). The purpose of this study was to examine whether an RS effect occurred over a 24-mo period in patients who were suffering from schizophrenia., Methods: The random forest method was applied to detect any RS reprioritization in a multicenter cohort study. QoL was recorded using a generic questionnaire (SF36) at baseline (T0), 12 mo (T12), and 24 mo (T24). Patients were categorized into 3 groups based on psychotic symptoms and relapse (stable, improved, and worsened groups) from their clinical profiles. The random forest method was performed to predict the General Health score of the SF36 from the other QoL domain scores of the SF36. We estimated the average variable importance of the QoL domain for each of the 3 groups., Results: A total of 124 (53.2%) patients were defined as stable, 59 (25.3%) as improved, and 50 (21.5%) as worsened. Among the stable group, the Social Functioning domain became more important over time. Of those classified as improved, the Mental Health domain became more important over time, while the Vitality domain became less important. Among those in the group who worsened, the Mental Health domain became less important while the Vitality and Bodily Pain domains became more important., Conclusions: Our study identified differential RS reprioritization among patients with different clinical profiles. Further work is needed to determine whether RS should be interpreted as a measurement bias or as an effect integrated in a true change., (© The Author(s) 2014.)

Atrial fibrillation (AF) is the most common arrhythmia. Its prevalence increases with age and increases the risk of stroke and systemic embolism. Few data are currently available on the quality of life (QOL) of anticoagulated patients with the advent of direct oral anticoagulants (DOAC). Our study aims to describe levels of QOL in elderly patients with AF receiving oral anticoagulants and compare QOL of patients treated with vitamin K antagonists (VKA) and DOAC. This prospective study included patients of 65 years and over, receiving anticoagulants for AF (VKA or DOAC) from general practice (n=70) or cardiac practice (n=30). The patients completed a self-administered questionnaire that included demographic, geriatric data and a QOL standardized scale: the anti-clot treatment scale (ACTS) 17 items exploring two dimensions "Burdens" and "Benefits". Eighty-nine patients were enrolled: 61 were taking VKA and 28 taking DOAC. Our two groups were comparable for all demographic and clinical characteristics studied. Our patients' mean scores were 48.6±12.1 on Burdens and 9.7±3.8 on Benefits. Burdens and Benefits scores were significantly better for patients treated with DOAC compared to patients with VKA (p<0.0001 and p<0.01, respectively). Anticoagulation in the elderly should be encouraged given the high thrombotic risk of AF. No matter what kind of molecule is chosen if in accordance to good guidance. Patients treated with ACOD seem to have a better QOL, but these results should be confirmed through larger randomized studies.

Introduction: Knowledge of which factors are determinant of quality of life (QoL) in patients with multiple scleroris (MS) would assist clinicians in choosing the most appropriate interventions. The aim of this study was to determine the contribution of sociodemographic and clinical factors in the predicting QoL in a 2-year cohort of patients with relapsing-remitting MS (RR-MS)., Methods: The study had a multi-center, multi-regional, and longitudinal design. Main inclusion criteria were: patient with a RR-MS subtype (McDonald criteria) and an Expanded Disability Status Scale (EDSS) score lower than 7.0. Sociodemographic (age, gender, education level, marital and employment status) and clinical (disability, disease duration, relapse) data were recorded. The QoL was assessed using the MusiQoL (disease-specific) and SF-36 (generic) questionnaires. Each patient was investigated at baseline and 24 months post-inclusion (ClinicalTrials.gov identifier: NCT00702065)., Results: Five hundred and twenty-six patients were enrolled in the present study. The 24-month MusiQoL index score was significantly inversely correlated with the disease duration. Baseline EDSS score impacted in both 'physical-like' and 'psychological-like' dimensions. At least one relapse during the follow-up period was associated with lower physical scores. Occupational status and marital status were associated with 24-month scores of MusiQoL and SF-36., Conclusion: After adjusting for disability and relapse occurrence, sociodemographics (age, marital status, and occupational status) and baseline QoL scores were also independent QoL predictors in MS patients. Special attention should be given to subgroups to ensure optimal management., (Copyright © 2014 Elsevier Masson SAS. All rights reserved.)

Background: The extent to which MS patients with cognitive dysfunction can accurately self-report outcomes has been a crucial issue. The aim of this study was to quantify and compare the relevance of the quality of life (QoL) assessment between two populations with a high occurrence of cognitive dysfunction, specifically in individuals with multiple sclerosis (MS) and in individuals suffering from schizophrenia (SCZ)., Design: A cross-sectional study was performed using the following inclusion criteria: MS and SCZ patients were diagnosed according to the McDonald criteria and DSM-IV criteria, respectively. Data on sociodemographic (age, gender, education level) and clinical (disease severity, disease duration) factors, QoL (disease-specific questionnaires, MusiQoL and SQoL) and cognitive performance (executive, memory, and attention functions) were collected. Non-impaired and impaired populations were defined according to the French norms. Psychometric properties were compared to those reported in reference populations, which were assessed in the respective validation studies. Suitability indices were provided used to quantitatively compare how the structures in the different populations matched with the initial structure of the questionnaires (reference populations)., Results: One hundred and twenty-four MS patients and 113 SCZ patients were enrolled. Factor analysis was performed on the impaired populations and revealed that the questionnaire structure adequately matched the initial structure of the disease-specific QoL questionnaires. All of the suitability indices of construct and external validity in the non-impaired populations ranged from 70 to 100%., Conclusions: Our study suggested that cognitive dysfunction did not compromise the reliability or validity of the self-reported QoL questionnaires among subjects with cognitive dysfunction, such as MS and SCZ. Thus, this report may clarify the relevance of using self-reported QoL assessments in clinical practice.

Objectives: This study aimed to develop a self-administered, multidimensional, poverty-related quality of life (PQoL) questionnaire for individuals seeking care in emergency departments (EDs): the PQoL-17., Study Design and Setting: The development of the PQoL was undertaken in three steps: item generation, item reduction, and validation. The content of the PQoL was derived from 80 interviews with patients seeking care in EDs. Using item response and classical test theories, item reduction was performed in 3 EDs on 300 patients and validation was completed in 10 EDs on 619 patients., Results: The PQoL contains 17 items describing seven dimensions (self-esteem/vitality, psychological well-being, relationships with family, relationships with friends, autonomy, physical well-being/access to care, and future perception). The seven-factor structure accounted for 75.1% of the total variance. This model showed a good fit (indices from the LISREL model: root mean square error of approximation, 0.055; comparative fit index, 0.97; general fit index, 0.96; standardized root mean square residual, 0.058). Each item achieved the 0.40 standard for item internal consistency, and Cronbach α coefficients were >0.70. Significant associations with socioeconomic and clinical indicators showed good discriminant and external validity. Infit statistics ranged from 0.82 to 1.16., Conclusion: The PQoL-17 presents satisfactory psychometric properties and can be completed quickly, thereby fulfilling the goal of brevity sought in EDs., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Few studies have assessed the role of cross-sex hormones on psychological outcomes during the period of hormonal therapy preceding sex reassignment surgery in transsexuals. The objective of this study was to assess the relationship between hormonal therapy, self-esteem, depression, quality of life (QoL), and global functioning. This study incorporated a cross-sectional design. The inclusion criteria were diagnosis of gender identity disorder (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision) and inclusion in a standardized sex reassignment procedure. The outcome measures were self-esteem (Social Self-Esteem Inventory), mood (Beck Depression Inventory), QoL (Subjective Quality of Life Analysis), and global functioning (Global Assessment of Functioning). Sixty-seven consecutive individuals agreed to participate. Seventy-three percent received hormonal therapy. Hormonal therapy was an independent factor in greater self-esteem, less severe depression symptoms, and greater "psychological-like" dimensions of QoL. These findings should provide pertinent information for health care providers who consider this period as a crucial part of the global sex reassignment procedure.

Objective: To provide new evidence regarding the suitability of using quality of life (QoL) measurements in homeless people with schizophrenia, we assess the acceptability and psychometric properties of a specific QoL instrument (S-QoL 18) in a population of homeless people with schizophrenia, and we compare their QoL levels with those observed in non-homeless people with schizophrenia., Methods: This multi-centre prospective study was conducted in the following 4 French cities: Lille, Marseille, Paris and Toulouse. Two hundred and thirty-six homeless patients with schizophrenia were recruited over a 12 month-period. The S-QoL 18 was tested for construct validity, reliability, external validity and sensitivity to change. The QoL of the 236 homeless patients was compared with 236 French age- and sex-matched non-homeless patients with schizophrenia., Results: The eight-factor structure of the S-QoL 18 was confirmed by confirmatory factor analysis (RMSEA = 0.035, CFI = 0.95, GFI = 0.99 and SRMR = 0.015). Internal consistency, reliability and sensitivity to change were satisfactory. External validity was confirmed via correlations between S-QoL 18 dimension scores and SF-36, symptomatology and recovery scores. The percentage of missing data did not exceed 5%. Finally, homeless patients had significantly lower QoL levels than non-homeless patients with schizophrenia., Conclusions: These results demonstrate the satisfactory acceptability and psychometric properties of the S-QoL 18, suggesting the validity of QoL measurement among homeless patients with schizophrenia. Our study also reported that QoL levels in homeless patients with schizophrenia were dramatically low, highlighting the need for new policies to eradicate homelessness and tackle poverty.

The aim of this study was to evaluate the medium-term outcome (health status, medical and surgical French National Health Authority-recommended follow-up, and quality of life) of children born with type III esophageal atresia (EA). Previous events (during the perinatal period, associated abnormalities, respiratory and digestive complications) of children treated for type III EA at the Marseille university hospitals between 1999 and 2009 were noted. Parents completed a standardized questionnaire concerning the health of their children during the previous year, and a quality-of-life questionnaire (PedsQL 4.0) was also completed by children aged more than 8 years. Among the 68 children treated, 44 responded to our solicitation (mean age, 7.6 years; range, 3-12.8 years). Previous important events were : pneumonia(s) (65%), asthma before the age of 3 years (66%), hospitalization for a respiratory event (45%), fundoplication (20%), and esophageal dilatation (45%). We noted current chronic cough (16%), asthma (30%), dysphagia (39%), and symptomatic gastroesophageal reflux (9%). National guidelines were not respected, except for the surgical indications in children aged less than 6 years. The quality-of-life scores (n=43 children) were similar to healthy controls but were negatively influenced by a gastrostomy procedure (P=0.020), pneumonia (P=0.013), and hospitalization due to a respiratory event (P=0.006) or a digestive event (P=0.010), and also by current asthma (P=0.004). In conclusion, despite recurrent respiratory or digestive symptoms and inadequate recommended follow-up, the quality of life of children treated for type III of EA is good., (Copyright © 2013. Published by Elsevier SAS.)

Introduction: The development in therapeutic strategies has increased survival of children affected by inborn errors of metabolism with restricted diet (IEMRD). These diseases have mild- and long-term consequences on the health. Little is known about the impact on the quality of life (QoL) of children and their families. The aims of this study were: to compare the QoL of the children and parents affected by IEMRD with the QoL of the general population and one pathology associated with long-term consequences., Patients and Methods: This cross-sectional study was performed at the French Reference Center for inborn metabolic disorders (Marseille, France). Inclusion criteria were: a child with a diagnosis of organic aciduria, urea cycle defect, or maple syrups urine disease (MSUD). Socio-demographics, clinical data, and QoL were recorded., Results: Twenty-one of 32 eligible families were included during a planned routine visit. Ten (47%, 95% CI 27-69%) children were affected by organic aciduria, six (29%, 95% CI 10-48%) by urea cycle defects, and five (24%, 95% CI 6-42%) by MSUD. Among the younger children, the general well-being was significantly lower in the children with IEMRD than in the leukemia children (58 ± 16 versus 76 ± 15, p = 0.012), and among the older children, the leisure activities were significantly lower in the children with IEMRD than in the leukemia children (29 ± 18 versus 62 ± 22, p < 10-3), while the relationships with teachers were better (76 ± 23 versus 60 ± 23, p = 0.01). The physical QoL score was lower in the parents than in the French norms (66 ± 21 versus 75 ± 1, p = 0.05). Factors modulating QoL were: eating and neurologic disorders, enteral nutrition, and feeding modalities., Conclusion: The children and the parents of children affected presented altered 'physical' and 'social' QoL scores compared with the norms and patients with leukemia and their families. Future studies based on larger cohort studies should determine the different weights of potential predictive factors of QoL.

Background: Responsiveness, defined as the ability to detect a meaningful change, is a core psychometric property of an instrument measuring quality of life (QoL) rarely reported in multiple sclerosis (MS) studies., Objective: To assess the responsiveness of the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire to change in disability over 24 months, defined by change in the Expanded Disability Status Scale (EDSS) score., Methods: Patients with MS were enrolled into a multicenter, longitudinal observational study. QoL was assessed using both the MusiQoL and the 36-Item Short-Form (SF-36) instruments at baseline and every 6 months thereafter up to month 24; neurological assessments, including EDSS score, were performed at each evaluation., Results: The 24-month EDSS was available for 524 patients. In the 107 worsened patients, two specific dimensions of MusiQoL, the sentimental and sexual life and the relationships with health care system dimensions, and 'physical' scores of SF-36 showed responsiveness., Conclusions: Whereas specific dimensions of MusiQoL identified EDSS changes, the MusiQoL index did not detect disability changes in worsened MS patients in a 24-month observational study. Future responsiveness validation studies should include longer follow-up and more representative samples.

Background: The development of new therapeutics has led to progress in the early management of congenital diaphragmatic hernia (CDH) in pediatric intensive care units (PICU). Little is known about the impact on the quality of life (QoL) of children and their family. The aim of this study was to assess the impact of CDH treated according to the most recent concepts and methods outlined above on child survivors' QoL and their parents' QoL., Patients and Methods: This study incorporated a cross-sectional design performed in two PICU (Marseille, France). Families of CDH survivors born between 1999 and 2008 were eligible. The following data were recorded: socio-demographics, antenatal history and delivery, initial hospitalization history. Self-reported data were collected by mail, including current clinical problems of the children (13-symptom list), children's QoL (Kidscreen-27 questionnaire), and parents' QoL (Short-Form 36 questionnaire). Children's QoL score was compared with controls and QoL of survivors of childhood leukemia. Parent's QoL was compared with controls. Non-parametric statistics were employed., Results: Forty-two families agreed to participate and questionnaires were completed by 32 of them. Twenty-one children had a current clinical problems related to CDH. All the QoL scores of CHD survivors were significantly lower compared with controls. The physical well-being dimension was significantly higher for CHD survivors compared with survivors of childhood leukemia. Gastro-esophageal reflux at discharge, antenatal diagnosis, length of stay in the PICU, and neuropsychological and respiratory issues significantly impacted QoL scores of children. The parents of CHD survivors had significantly poorer score in emotional role dimension compared with controls., Conclusion: The impact of CDH on QoL seems to be important and must be understood by clinicians who treat these children and their parents.

Quality of life (QoL) is of great importance to patients with schizophrenia and their families. Although the use of QoL measures may contribute to better adherence to therapeutic interventions, more satisfaction with care, improved health outcomes and reduction of health costs, QoL assessment remains underutilized in clinical practice. In this review, the authors propose a reflection on the limitations and lack of impact of QoL measures in clinical care. Our argument is based on three challenges regarding conceptual aspects and metrics, use and limits and the usefulness of measuring QoL. For each challenge, the authors have suggested pragmatic proposals and new research directions to promote the use of QoL measures in the future. These avenues of research involve a shared responsibility between QoL researchers, the medical community and decision makers. Close collaboration between all parties is necessary to promote the use of QoL measures in schizophrenia.

Background: Quality of life (QoL) measurements are increasingly considered to be an important evaluation of the treatment and care provided to patients with schizophrenia. However, there is little evidence that assessing QoL improves patient outcomes in clinical practice., Aims: To investigate the impact of a QoL assessment with feedback for clinicians regarding satisfaction and other health outcomes in patients with schizophrenia., Method: We conducted a 6-month, prospective, randomised and controlled open-label study. Patients with schizophrenia were assigned to one of three groups: standard psychiatric assessment; QoL assessment with standard psychiatric assessment; and QoL feedback with standard psychiatric assessment. The primary outcome was patient satisfaction at 6 months. The local ethics committee (Comité de Protection des Personnes Sud-Méditerranéee V, France, trial number 07 067) and the French drug and device regulation agency (Agence Française de Sécurité Sanitaire des Produits de Santé, France, trial number A01033-50) approved this study., Results: We randomly assigned 124 patients into groups. Quality of life feedback significantly affected patient satisfaction. Global satisfaction was significantly higher in the QoL feedback group (72.5% of patients had a high level of satisfaction) compared with the standard psychiatric assessment (67.5%) and QoL assessment groups (45.2%). Despite trends towards decreased severity for all clinical outcomes and increased changes to medication in the QoL feedback group at 6-month follow-up, these effects were not significant., Conclusions: Quality of life feedback positively influences patient satisfaction, which confirms the relevance of measuring QoL in clinical practice. The absence of a significant effect of QoL feedback on clinical outcomes also suggests that clinicians did not use these data optimally. Our findings suggest a nocebo effect of QoL assessment without feedback that should be considered by researchers and clinicians.

Background: Impaired executive functions are among the most widely observed in patients suffering from schizophrenia. The use of self-reported outcomes for evaluating treatment and managing care of these patients has been questioned. The aim of this study was to provide new evidence about the suitability of self-reported outcome for use in this specific population by exploring the internal structure, reliability and external validity of a specific quality of life (QoL) instrument, the Schizophrenia Quality of Life questionnaire (SQoL18)., Design: cross-sectional study., Inclusion Criteria: age over 18 years, diagnosis of schizophrenia according to the DSM-IV criteria., Data Collection: sociodemographic (age, gender, and education level) and clinical data (duration of illness, Positive and Negative Syndrome Scale, Calgary Depression Scale for Schizophrenia); QoL (SQoL18); and executive performance (Stroop test, lexical and verbal fluency, and trail-making test). Non-impaired and impaired populations were defined for each of the three tests. For the six groups, psychometric properties were compared to those reported from the reference population assessed in the validation study., Results: One hundred and thirteen consecutive patients were enrolled. The factor analysis performed in the impaired groups showed that the questionnaire structure adequately matched the initial structure of the SQoL18. The unidimensionality of the dimensions was preserved, and the internal/external validity indices were close to those of the non-impaired groups and the reference population., Conclusions: Our study suggests that executive dysfunction did not compromise the reliability or validity of self-reported disease-specific QoL questionnaire., (Copyright © 2013 Elsevier B.V. All rights reserved.)

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., 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., (© 2013 The Author(s) European Journal of Neurology © 2013 EFNS.)