Relapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey
Notice bibliographique
Résumé
BACKGROUND: Underestimation of relapse in multiple sclerosis (MS) is detrimental to the patient as well as to their relationship with their MS healthcare professional (HCP). OBJECTIVE: To obtain direct insight into relapse prevalence, symptoms, and HCP engagement from patients with MS who responded to the Multiple Sclerosis in America (MSIA) 2017 survey. METHODS: Information on patient demographics, health insurance coverage, symptoms, disability, relapses, and related HCP interactions were captured. Descriptive analyses were conducted and relapses were annualized. Chi-square tests were used to evaluate frequency of patient engagement, i.e. speaking with or seeing their HCP during relapse with annualized relapse frequency and topics discussed. RESULTS: Of the 5,311 patient-respondents, the mean age was 51.2 years (84.3% female, 89.3% Caucasian); 40.1% were on disability, and 96.8% had health insurance coverage. A total of 72.2% of patients were diagnosed with relapsing-remitting MS (RRMS); 74.8% of patients not reporting a diagnosis of primary progressive MS (PPMS) (n = 4819) were using disease-modifying therapy. In the 2 years preceding the survey, 73.1% experienced a relapse for a median number of 2 relapses; this corresponded to an annualized relapse distribution among all patients of 44.1% with < 1 relapse, 35.5% with 1-2 relapses, and 20.2% with > 2 relapses. In patients reporting relapses, 62.5% cited an average relapse duration of < 1 month, 10.9% cited 1-2 months, and 13.6% cited > 2 months (12.9% were unsure/didn't recall). Leading symptoms experienced with MS relapse were fatigue (77.4%), numbness/tingling (70.0%), and walking or balance issues (68.8%). With respect to HCP engagement during relapse, 46.9% of patients reported doing so always/often, vs. sometimes (27.3%), rarely (18.5%), and never (7.3%). The most common reasons cited for not engaging an HCP were that the relapse was not severe enough (57.9%), the HCP was unhelpful or didn't specifically tell the patient to contact them (30.9%), the treatment didn't work well or wasn't tolerated (25.6%), or the preference to manage alone (24.4%). A higher percentage of patients with 1 relapse coincided with the highest frequency of HCP engagement during relapse, and the highest percentage of patients with ≥ 5 relapses coincided with the lowest frequency of HCP engagement during relapse. Key relapse-related and MS-related topics were discussed more by patients who always/often engage their HCP during relapse. HCP follow-up after relapse was variable, with 35.0% of patients reporting follow-up within 1 month of first contact, 50.3% reporting follow-up at the next office visit, and 14.7% reporting no follow-up. CONCLUSION: MS relapse remains particularly challenging for certain patients; some experience > 2 relapses in 1 year, relapse durations > 1 month, and relapse symptoms that interfere with daily functioning (e.g. walking/balance by 68.8%). Approximately 25% of patients reported rarely or never engaging their HCP during relapse. Common reasons for not engaging, like HCP helpfulness and treatment effectiveness/tolerance, warrant further exploration. Results indicating the benefits of timely touchpoints on both the part of the patient and HCP during relapse include the relationship between higher frequency of engagement with lower relapse frequency and more discussion of both relapse-related and MS-related discussion topics. Survey limitations apply.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
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 | 0,002 | 0,004 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 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 ».