Search

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. Young 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. [ABSTRACT FROM AUTHOR]

The current aim of the fight against the HIV epidemic is to reduce the proportion of missed opportunities for HIV diagnosis. Erotic industry Shows (ES) were deemed to be appropriate events to organize awareness campaigns and to propose HIV Rapid Diagnostic Test (HIV-RDT) to people who are sexually active and likely to engage in unsafe sex practices. In 2015, a cross-sectional study in 4 ES was conducted to document the sexual risk factors associated with HIV-screening test approach and the proportion of positive HIV-RDT. Prevention booths were set up to offer HIV-screening to individuals ≥18 years volunteers for HIV-RDT and to respond to a validated anonymous self-reported questionnaire. In 4 ES, 943 participants were questioned and tested, mainly men (64%), young (mean age 30 years old), living as a couple (63.7%). A large majority (95.1%) reported sexual intercourse over the last year. The mean number of partners was 4.8. About 2/3 had unprotected sex. 37.5% had never been tested and had their first test during this campaign. The 430 participants who reported no previous HIV-testing during the last 5 years more frequently declared heterosexual intercourse (OR: 2.31), identifying as a male (OR: 1.82), having transactional sex (OR: 1.92), living as a couple (OR: 1.67), having fewer sexual partners (OR: 1.06) and being younger (OR = 1.02). Three people (0.32%) were tested positive for the HIV-RDT; linkage with care was ensured for confirmatory test. This innovative and original intervention showed for the first time the usefulness of HIV-screening and awareness campaigns, in fun and commercial backdrop event. Individuals who had never been HIV-tested and who had no intention of doing so before this campaign were reached and engaged. ES are potential new locations to get HIV information and screening, to tackle sexual health-related issues and reflect on sexual risk behaviors. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: Researchers are interested in studying whether the quality of life (QoL) of cancer patients and caregivers is influenced by internal psychobehavioral processes (temporality and coping strategies) and the personality traits that they or their relatives experience. We examined these associations in a sample of patient-caregiver dyads by using the actor-partner interdependence model.Methods: This cross-sectional study involved 156 cancer patient-caregiver dyads. The self-reported data included QoL (Short-Form 36), coping strategies (Brief Coping Orientation to Problems Experienced Scale), time perspectives (Zimbardo Time Perspective Inventory), and personality (Big Five Inventory). The actor-partner interdependence model was used to test the dyadic effect individualizing actor (degree to which the individual's characteristics were associated with their QoL) and partner (degree to which the individual's characteristics were associated with the QoL of the other dyad member) effects.Results: Actor effects were found for patients and caregivers: The use of positive thinking and future/present-hedonistic perspectives were associated with higher QoL; the use of avoidance and past-negative perspective were associated with lower QoL. Partner effects were also found highlighting the specific mechanisms of the interconnections in the patient-caregiver dyad. The patient's QoL was higher when the caregiver used social support and experienced openness. The caregiver's QoL was lower when the patient used social support and avoidance strategies and experienced future perspective.Conclusions: The examination of the relationships between individuals' QoL and their internal psychobehavioral processes and personality traits will have several applications in the routine clinical management. Individual-level and dyad-level interventions should be proposed: cognitive-rehabilitation, emotional and cognitive self-regulation for time perspectives, and personality constructs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: It is now well documented that critically ill patients are exposed to stressful conditions and experience discomforts from multiple sources. Improved identification of the discomforts of patients in intensive care units (ICUs) may have implications for managing their care, including consideration of ethical issues, and may assist clinicians in choosing the most appropriate interventions. The primary objective of this study was to assess the effectiveness of a multicomponent program of discomfort reduction in critically ill patients. The secondary objectives were to assess the sustainability of the impact of the program and the potential seasonality effect.Methods/design: We conducted a multicenter, cluster-randomized, controlled, single (patient)-blind study involving 34 French adult ICUs. The experimental intervention was a 6-month period during which the multicomponent program was implemented in the ICU and included the following steps: identification of discomforts, immediate feedback to the healthcare team, and implementation of targeted interventions. The control intervention was a 6-month period during which any program was implemented. The primary endpoint was the monthly overall score of self-reported discomfort from the French questionnaire on discomforts in ICU patients (IPREA). The secondary endpoints were the scores of the discomfort items of IPREA. The sample size was 660 individuals to obtain 80% power to detect a 25% difference in the overall discomfort score of IPREA between the two groups (design effect: 2.9).Discussion: The results of this cluster-randomized controlled study are expected to confirm that a multicomponent program of discomfort reduction may be a new strategy in the management of care for critically ill patients.Trial Registration: ClinicalTrials.gov NCT02442934, registered 11 May 2015. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The prevalence of chronic constipation is about 15 % in Western countries with a significant impact on quality of life and health care costs. The first-line therapy, based on medical treatment combined with laxatives and dietary rules, is often disappointing. Interferential therapy is a new treatment that has demonstrated its efficiency in the treatment of chronic constipation in children and encouraging results in adults. The primary objective of this study is to assess the efficacy of interferential therapy during 8 weeks in adult patients. The secondary objectives are to assess this new and noninvasive therapy in terms of persistence of the clinical efficacy, colonic transit time, ano-rectal manometry, patient satisfaction and quality of life (QoL), and tolerance.Methods/design: Design: multicenter, prospective, randomized, placebo-controlled, double blind, two-parallel groups study.Setting: nine French adult gastroenterology centers.Inclusion Criteria: adult patients with a history of chronic constipation refractory to medical treatment for at least 3 months. Treatment groups: (1) interferential-experimental group (effective stimulation); (2) placebo-control group (sham stimulation).Randomization: 1:1 allocation ratio. Evaluation times: inclusion (T0, randomization), baseline assessment (T1), start of stimulation (T2), intermediary assessment (T3, 4 weeks), end of stimulation (T4, 8 weeks), follow-up (T5 and T6, 1- and 6-month).Endpoints: (1) primary: short-term efficacy at T4 (treatment response defined as three or more spontaneous, complete bowel movements per week); (2) secondary: efficacy at T5 and T6, symptoms (Patient Assessment of Constipation Symptoms questionnaire), colonic transit time, anorectal manometry, patient satisfaction (analogical visual scale), patient QoL (Patient Assessment of Constipation Quality of Life Questionnaire), side/unexpected effects.Sample Size: 200 individuals to obtain 80 % power to detect a 20 % difference in treatment response at T4 between the two groups (15 % of lost to follow-up patients expected).Discussion: The randomized, double-blind, placebo-controlled design is the most appropriate to demonstrate the efficacy of a new experimental therapeutic (Evidence-Based Medicine Working Group classification). National and international recommendations could be updated based on the findings of this study.Trial Registration: Current controlled trials NCT02381665 (registration date: February 13, 2015). [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract: Purpose: The study objective was to validate a specific quality of life (QoL) questionnaire for caregivers of cancer patients, the CareGiver Oncology Quality of Life questionnaire (CarGOQoL), based on the exclusive points of view of the caregivers. Materials and methods: A 75-item questionnaire generated from content analysis of interviews with caregivers was self-completed by 837 caregivers of cancer patients. In addition to sociodemographic data and patient characteristics, self-reported questionnaires assessing QoL, burden, coping and social support were collected. Psychometric properties combined methods relying on both classical test theory and item response theory. Results: The final 29 items selected assessed 10 dimensions: psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support and private life; they were isolated from principal component analysis explaining 73% of the total variance. The missing data and the floor effects were low. Some ceiling effects were found for B (34%). Cronbach’s alpha coefficients ranged from 0.72 to 0.89, except private life (PL) (0.55). Unidimensionality of the scales was confirmed by Rasch analyses. Correlations with other instruments confirmed the isolated content and significant links were found with respect to patient’s characteristics. Reproducibility and sensitivity to change were found satisfactory. Conclusion: The CarGOQoL could provide a reliable and valid measure of caregivers of cancer patients’ QoL which are key-actors in the provision of health care. [Copyright &y& Elsevier]

A response from the authors of the article "Evaluating the Impact of a Quality of Life Assessment With Feedback to Clinicians in Patients With Schizophrenia: Randomised Controlled Trial" published in the journal in 2013 is presented.