Psychological adaptation to a rare, disfiguring disease: European study with patients suffering scleroderma
Notice bibliographique
Résumé
Background: Scleroderma is a chronic disorder, characterized by thickening and fibrosis of the skin and disruption of internal organs that affects global functioning and quality of life. Facial skin alterations have an impact on self-esteem and interfere with social interactions, with an association to psychological symptoms, especially depression. The aim of this study, in collaboration with a Canadian team and European Associations, intended to characterize the symptoms and the psychological problems in European patients with scleroderma. Methods: 563 participants from 13 European Countries; 484 (89%) female; 59 (11%) male; mean age: 49 (SD= 14.8); 93% caucasian; 68% married; 32% higher education filled out the Patient Survey of Health Concerns and Research Priorities. (Scleroderma Society of Canada (SSC) and Canadian Scleroderma Research Group).The questionnaire has 11 Sections (Demographics, Diagnosis and Disease; Healthcare Services Utilization; Healthcare Services Reimbursement; Healthcare Services Reimbursement Needs; Medical Care; Symptoms; Employment; Sensations; Physical Appearance; Commentaries). Results: the symptoms most commonly reported by patients are: joint pain, fatigue, Raynaud’s symptoms, muscle pain, hardening/tightening of the skin, difficulty sleeping, difficulty remember things and heartburn. 74% of participants reported that they show little interest or pleasure in performing tasks several days, more than half of the days or nearly every day. 72% feels down, depressed or hopeless, several days, more than half of the days or nearly every day. 72% Feel’s nervous, anxious, or on edge, more than half of the days or nearly every day. 40% reported the avoidance of activities because they feel that they will fail due to scleroderma related problems. 43% of participants have been diagnosed with diffuse scleroderma and 21% with CREST. 77% reported other medical conditions, the most frequent being Esophageal dysfunction (56%). 100% of participants reported concern regarding the appearance of parts of their bodies, which they consider especially unattractive due to scleroderma. 64% of participants reported that scleroderma affects their ability to work, very much or extremely. Discussion and Conclusions: The results concerning the frequency and impact of symptoms were approximate to the results obtained in Canada. There was however some marked differences in psychological variables. The results of the European participants reached higher levels on issues of depression and anxiety. The results of this study indicate that all participants are concerned about the physical appearance due to scleroderma. These results emphasize the need of psychological intervention in patients with scleroderma in Europe. These results should be taken into consideration by the teams who follow these patients
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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,001 | 0,002 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».