Patient Experience: Living with Cystinuria During the COVID-19 Pandemic
Notice bibliographique
Résumé
Background and Objectives Cystinuria is a rare genetic cause of recurrent urolithiasis and requires multimodal treatment, and stringent follow up. We wanted to evaluate the fears and concerns of patients with cystinuria during the COVID-19 pandemic. Materials and Methods An online survey using Google Forms was emailed to 165 patients with cystinuria who are maintained on a prospective database and had previously consented for email correspondence. Results Fifty-five responses were received following a single invitation, 23 were men and 32 women with a median age of 43 (range: 18-72) years. Thirty-nine (70.9%) out of 55 were isolating during the COVID-19 pandemic although only 7(12.7%) were given specific advice to shield officially. Six (10.9%) reported having COVID or COVID like symptoms, but none reported having a positive test. Only 9 (16.4%) had been able to work as usual. In comparison, 20 (36.4%) were able to work from home. Ten out of 19 patients (52.6%) on chelating medication described difficulty in access to their medicine, either due to a shortage at the pharmacy or prescription access. Reassuringly 34 (61.8%) patients described no issues with access to any of their cystinuria medications. Twenty-two patients (40%) reported experiencing pain or passing a stone during the COVID-19 pandemic, while 30 (54.5%) reported no problems. Of patients who felt it applicable, 16/31 (51.6%) were worried about attending the Emergency Department during this time. Of patients who had scheduled hospital appointments during this time, 26/44 (59.1%) had experienced cancellations. The majority of the respondents (37 (67.3%)) did not state any difference in the ability to stay hydrated during the lockdown. Twenty-eight (50.9%) were more anxious about their overall health during the pandemic, and 20 (36.4%) had expressed more concern about their kidney stones. Conclusion This personal fully patient-reported snapshot of the impact of the COVID-19 pandemic on a population of cystine stone formers in the United Kingdom has highlighted additional challenges for patients with a rare disease. The lockdown measures enforced have had a varying effect on patients’ ability to work as normal, access medications, health anxieties, in addition to cancellations of the planned hospital appointments and Emergency Department attendance, which will impact on their future health and pose evolving challenges in delivery of their future care.
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 | 0,006 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,002 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 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 ».