Patient-reported outcome measures in endometriosis

International audiencePatient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients’ perspectives on their condition. In endometriosis care, physicians’ understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients’ quality of life, as well as provide a tool for patients’ self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes

Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment:A cross-sectional multicenter European study

OBJECTIVE: To evaluate how participation of children with cerebral palsy (CP) varied with their environment. DESIGN: Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child’s impairments and pain. SETTING: European regions with population-based registries of children with CP. PARTICIPANTS: Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation in life situations. RESULTS: For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities—mealtimes, health hygiene, personal care, and home life—was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation. CONCLUSIONS: The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS: This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life

Speckle-Tracking Echocardiography in Children With Duchenne Muscular Dystrophy: A Prospective Multicenter Controlled Cross-Sectional Study.

BACKGROUND: Prognosis of Duchenne muscular dystrophy (DMD) is related to cardiac dysfunction. Speckle-tracking echocardiographic (STE) imaging is emerging as a noninvasive functional biomarker to consider in the early detection of DMD-related cardiomyopathy. However, STE analysis has not been assessed in a prospectively controlled study, especially in presymptomatic children with DMD, and no study has used STE analysis in all three displacements (longitudinal, radial, and circumferential) and for both ventricles. METHODS: This prospective controlled study enrolled 108 boys, 36 of whom had DMD (mean age, 11 ± 3.8 years) and 72 of whom were age-matched control subjects in a 1:2 case-control design. Conventional echocardiographic variables were collected for the left and right ventricles. STE analyses were performed in the longitudinal, radial, and circumferential displacements for the left ventricle and in the free wall longitudinal displacement for the right ventricle. The effect of age on the evolution of two-dimensional strain in children with DMD was studied by adding an interaction term, DMD × age, in the models. RESULTS: Conventional echocardiographic measures were normal in both groups. Left ventricular (LV) ejection fraction ranged from 45% to 76% (mean, 63 ± 6%) in the DMD group and from 55% to 76% (mean, 64 ± 5%) in the control group. Global LV strain mean measures were significantly worse in the DMD group for the longitudinal (-16.8 ± 3.9% vs -20.6 ± 2.6%, P < .0001), radial (22.7 ± 11.3% vs 31.7 ± 14%, P = .002), and circumferential (-16.5 ± 3.8% vs -20.3 ± 3.1%, P < .0001) displacements. The decrease of global LV longitudinal strain with age in children with DMD was 0.34% per year more marked than that in control subjects. The LV inferolateral and anterolateral segments were specifically impaired, especially in the basal area. Right ventricular function evaluated using conventional echocardiography and STE analysis was normal and not different between children with DMD and control subjects. CONCLUSIONS: The existence of altered LV strain despite normal LV function in children with DMD represents an important perspective for future pediatric drug trials in DMD-related cardiomyopathy prevention

Scenographic materialism, affordance and extended cognition in Kris Verdonck’s ACTOR #1

This article addresses the theme of the ‘scenographic turn’ from the perspective of a spectator’s experience of scenography. By focusing on the materiality of scenography, I intend to draw particular attention to the role of the spectator’s body in the perception and reception of performance. The expansion of scenographic practice to incorporate forms where objects and materials are central to the audience experience requires us to rethink the ways we account for scenography. Recent interest in the use of concepts from cognitive science as a means of analysing theatre might provide some help with this. In this article I consider concepts of affordance and extended cognition to see how they might be useful in thinking through an experience of attending Kris Verdonck’s ACTOR #1

The energy disruptor metformin targets mitochondrial integrity via modification of calcium flux in cancer cells

none22noneLoubiere, Camille; Clavel, Stephan; Gilleron, Jerome; Harisseh, Rania; Fauconnier, Jeremy; Ben-Sahra, Issam; Kaminski, Lisa; Laurent, Kathiane; Herkenne, Stephanie; Lacas-Gervais, Sandra; Ambrosetti, Damien; Alcor, Damien; Rocchi, Stephane; Cormont, Mireille; Michiels, Jean-François; Mari, Bernard; Mazure, Nathalie M.; Scorrano, Luca; Lacampagne, Alain; Gharib, Abdallah; Tanti, Jean-François; Bost, FredericLoubiere, Camille; Clavel, Stephan; Gilleron, Jerome; Harisseh, Rania; Fauconnier, Jeremy; Ben-Sahra, Issam; Kaminski, Lisa; Laurent, Kathiane; Herkenne, Stephanie; Lacas-Gervais, Sandra; Ambrosetti, Damien; Alcor, Damien; Rocchi, Stephane; Cormont, Mireille; Michiels, Jean-François; Mari, Bernard; Mazure, Nathalie M.; Scorrano, Luca; Lacampagne, Alain; Gharib, Abdallah; Tanti, Jean-François; Bost, Frederi