M.C. Rousseau

Evaluation of quality of life in complete locked-in syndrome patients.

BACKGROUND There are few studies where quality of life (QOL) and contributive factors are assessed in locked-in syndrome (LIS) patients with complete physical and functional disability and dependence on caregivers. OBJECTIVE The studys objective was evaluation of QOL in LIS patients. DESIGN We have compared QOL in LIS patients with QOL in healthy controls (control group). SETTING/SUBJECTS We have included 19 LIS patients, most of them with vascular etiologies or terminal course of ALS, and 20 healthy controls comparable with LIS patients for age; none of them was in a caregiving position. MEASUREMENTS Administered to patients and controls were the McGill Quality of Life Single Item Scale (MQOL-SIS) Part A; Short Form survey (SF-36), Mental Component Summary (MCS) and Physical Component Summary (PCS); Beck Depression Inventory-II (BDI-II); and Toronto Alexithymia Scale (TAS). RESULTS Mean MQOL-SIS and MCS SF-36 were not significantly different between the LIS group and healthy controls. PCS SF-36 score was significantly higher in controls. There were no significant differences between the two groups for TAS scores. Frequency of depressive symptoms was significantly higher in LIS patients than in controls. CONCLUSION In our study, QOL in LIS patients was not significantly altered compared to control subjects in MQOL-SIS and in the MCS SF-36 scale; these results match previous studies published in the literature. Several factors may have an impact on QOL in LIS patients, such as family support and patient-computer communication devices; these may have contributed to improve QOL in LIS patients in this study.

Aetiologies, comorbidities and causes of death in a population of 133 patients with polyhandicaps cared for at specialist rehabilitation centres

Abstract Aim: This study concerns the aetiologies, comorbidities and places and causes of death of a population of persons with severe polyhandicap (PLH). Methods: Based on the medical files of all deceased PLH patients, who were cared for between 2006–2012. Data collected were aetiological diagnosis of the polyhandicap, duration and type of hospitalization, age, place and cause of death, comorbidities: chronic respiratory insufficiency, recurrent attacks of pulmonary infections, urinary infections, active epilepsy, scoliosis, chronic digestive disorders and behavioural problems. Results: One hundred and thirty-three patients died, 70 children and 63 adults. The sex ratio was 84 men to 49 women. The average stay in these institutions was 10 years 4 months. The average age at the time of death was 21 years, in 60% of cases the place of death was in the specialist rehabilitation centres. The causes of death in decreasing order were: pulmonary infections (63.2%), sudden death (18%) and status epilepticus (6.8%); 79.7% of patients suffered from chronic respiratory insufficiency, 60.2% suffered serious scoliosis, 66.9% drug-resistant epilepsy and 78.9% had digestive disorders. The main aetiologies of the polyhandicap were: pre- and perinatal encephalopathies (31.6%), metabolic encephalopathies (18%) and convulsive encephalopathies (11.3%). Conclusion: The main comorbidity and main cause of death in patients with severe PLH is respiratory failure.

Evaluation of quality of life in individuals with severe chronic motor disability: A major challenge

Diverse conditions causing a very heavy and chronic motor disability, such as an advanced amyotrophic lateral, advanced form of multiple sclerosis, high spinal cord injury or a locked-in syndrom, are now getting better medical care and benefit of life support technology with consequent prolonged survival. Quality of life (QoL) assessment is being considered increasingly important to globally apprehend their general well-being. However, the motor disability that affects them appears as a substantial limitation for the assessment of their QoL and consequently a major challenge for all the community that carries an interest for them. This review discussed several avenues to provide to patients and caregivers, clinicians and researchers, and health decision making authority: i) elements to determine the most appropriate QoL measure with regard to the interest of patients point of view, the QoL instruments suitable for this category of patients and their acceptability, ii) some arguments of the clinical relevance and accuracy of QoL assessment: interpretations of the questionnaires, QoL determinants, particularity of QoL evaluation for individuals with cognitive impairment and the caregivers perceptions of patients QoL. In conclusion, evaluation of QoL in patients with severe chronic motor handicap is a challenge of major interest, with major ethical issues. It needs to use adapted QoL scales and longitudinal following because of adaptive phenomena to the degree of handicap.

Impact of caring for patients with severe and complex disabilities on health care workers' quality of life: determinants and specificities

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.

Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients

Background The aims of this study were 1) to describe the health profiles and care management of polyhandicapped patients according to 2 modalities, specialized rehabilitation centers (SRC) and residential facilities (RF), and 2) to estimate the adequacy of care management of these patients. Methods This was an 18-month cross-sectional study including patients with a combination of severe motor deficiency and profound intellectual impairment. The patients were from 4 SRC and 9 RF. The following data were collected: sociodemographics, health status, care management, and adequacy of care management. Results A total of 782 patients were included: 410 (52%) were cared for in SRC and 372 (48%) in RF. Global objective adequacy (health severity and age category) was higher for patients cared for in SRC compared with patients cared for in RF (57 vs. 44%, p< = 10−3). Global subjective adequacy (self-perception of the referring physician and request of change in structure) was higher for patients cared for in SRC in comparison with patients cared for in RF (98 vs. 92%, p< = 10−3). Conclusions This study provides key elements of adequacy of care management modalities for polyhandicapped patients in France. Trial registration ClinicalTrials.gov NCT02400528

Psychological Factors as a Determinant of Noninvasive Ventilation Compliance: Key Practical Aspects and Topics

Noninvasive mechanical ventilation (NIV) is a useful procedure in the management of patients with chronic respiratory failure with hypercapnia. Although NIV can benefit survival and quality of life in these patients, psychological factors have a great influence on patients’ compliance with NIV. This emphasizes the importance of understanding the psychological dimension to maximize NIV acceptance.

Évolution après six ans d’intervalle de la qualité de vie de 68 patients locked in syndrome

Mots clés : Aphasie ; Qualité de la vie ; Accident vasculaire cérébral Du fait d’importantes difficultés pour utiliser des questionnaires à support verbal, la qualité de la vie (QDV) des personnes aphasiques par accident vasculaire cérébral (AVC) reste mal connue. Une méta-analyse récente par Hilari et al. ont identifié certains facteurs prédicteurs, mais on manque de données sur des échantillons représentatifs et on ne sait pas si tous les paramètres de la QDVsont affectés par l’aphasie. Objectif .– Documenter la QDV de personnes aphasiques, ses différentes dimensions et ses facteurs d’influence. Patients et méthodes.– Cent-un patients de l’enquête épidémiologique d’Aquitaine présentée à la SOFMER, Nantes (Lagadec et al., 2011), ont été comparés à 154 témoins sains et 55 patients victimes d’AVC sans aphasie. La QDVa été évaluée par des versions françaises du SIP-65 (Benaïm et al., 2003) et de la Li Sat-11 (Branholm et Fugl-Meye,r 1996). Résultats.– La QDV des personnes aphasiques est significativement inférieure à celle des sujets sains sur tous les paramètres du SIP-65, sauf l’alimentation, et significativement inférieure à celle des sujets AVC non aphasiques sur cinq paramètres: fatigue, occupations à la maison, déplacements à l’extérieur, communication et loisirs. Selon la Li Sat-11, les personnes aphasiques sont significativement moins satisfaites de leur vie que les témoins sains dans toutes ses dimensions, et significativement moins satisfaites que les sujets AVC non aphasiques sur neuf paramètres: vie en général, autonomie, loisirs, ressources, relations avec le conjoint, sexualité, contacts avec les amis, santé physique et santé psychologique. L’influence de la sévérité de l’aphasie, de l’état fonctionnel (Index de Barthel), des capacités de communication et de la thymie est retrouvée en analyse univariée. Des analyses multivariées sont en cours. Discussion et conclusion.– Par rapport à des patients victimes d’AVC sans aphasie, celle-ci altère donc la QDV notamment dans ses dimensions relationnelles, familiales et sociales. Ce constat doit être pris en compte dans les projets thérapeutiques, et des approches favorisant l’insertion psychosociale des personnes aphasiques doivent être développées.