Sentiments of Individuals with Interstitial Cystitis/Bladder Pain Syndrome Toward Pentosan Polysulfate Sodium: Infodemiology Study
Notice bibliographique
Résumé
Background: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urgency, and bladder discomfort. These IC/BPS symptoms can significantly impact individuals' quality of life, affecting their mental, physical, sexual, and financial well-being. Individuals sometimes rely on peer-to-peer support to understand the disease and find methods of alleviating symptoms. The only US Food and Drug Administration-approved medication to treat IC/BPS is pentosan polysulfate sodium (PPS). However, ocular pigmentary maculopathy has been described in some individuals, with greater severity associated with prolonged PPS exposure. Objective: While prior research has separately assessed the benefits and side effects of PPS, this study sought to identify (1) sentiments of individuals with IC/BPS toward PPS and (2) topics discussed by individuals with IC/BPS in conjunction with PPS through use of an internet peer-to-peer forum. Methods: Data were collected from Inspire-an anonymous web-based health community where individuals gather by condition to find support and information. Sentiment analysis and percentages of negative, positive, and neutral sentiment for PPS discussions encompassing each topic was conducted using VADER (Valence Aware Dictionary for Sentiment Reasoning). Topic modeling was conducted using latent Dirichlet allocation. Words with the highest probability were ranked to categorize each topic, and authors manually investigated and labeled discussions. Results: There were 354 forum posts related to PPS. Topic modeling with latent Dirichlet allocation revealed 5 topic categories: "ineffectiveness or discontinued use," "alternative treatments," "personal treatment suggestions based on experience," "severe side effects," and "risk of long-term use." Topics related to "severe side effects" and "risk of long-term use" garnered less discussion, with the former also having the lowest positive sentiment (4.28, 14.29%). The topic "ineffectiveness or discontinued use" was most frequently discussed. This topic also had the highest percentage of negative posts (52/152, 34.21%). However, the average compound score was within the neutral compound score range (-0.094, SD 0.625). In addition, forum data highlighted individuals' acknowledgment of the efficacy of PPS in improving their quality of life, with statements such as "saved my sanity" being representative. The overall compound individuals' sentiment toward PPS was -0.083, split across 32.49% (115/354) negative, 22.03% (78/354) positive, and 45.48% (161/354) neutral sentiment categories. Conclusions: The overall authentic sentiment toward PPS is broad but balances to neutral. This neutral sentiment suggests that while some individuals express concerns about the side effects and long-term risks associated with PPS, others appreciate its positive impact on their quality of life. This research confirms that individuals with IC/BPS actively engage with health forums like Inspire to seek information, share their experiences, and explore different treatment options. As IC/BPS remains a complex syndrome, this study highlights the value of patient-led discussions in informing treatment decisions. Furthermore, these findings suggest that health care providers might benefit from considering the insights shared on peer-to-peer forums to better understand individual preferences, concerns, and expectations.
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 | 0,001 | 0,003 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,000 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,001 | 0,000 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,000 |
| 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 ».