Cytokine Release Syndrome: The Patient, Caregiver and Healthcare Professional Experience
Notice bibliographique
Résumé
Background: Cytokine release syndrome (CRS) is a supraphysiologic response to T-cell engaging immunotherapy that can negatively impact the treatment experience of patients with non-Hodgkin lymphoma (NHL) and other blood cancers. We explored patient, caregiver and healthcare professional (HCP) perspectives on key burdens and unmet needs associated with CRS. Methods: Existing insights from disease-level patient journeys (follicular lymphoma, diffuse large B-cell lymphoma, multiple myeloma [MM]) and reports from focus groups with a CRS patient working group from the USA, UK, Canada, and Belgium were assessed to identify key questions. Further interviews were conducted (November 2022-January 2023) in the USA, UK, Germany, and Austria to address these questions with patients, caregivers and HCPs. HCP insights were collected via 60-minute virtual interviews; patient and caregiver insights were collected via video homework tasks and 60-minute virtual interviews. Outputs were validated by the working group, consisting of patients with CRS experience and representatives of patient organizations. Results: A total of 34 HCPs (hemato-oncologists, n=24; nurses, n=10; Tables 1 & 2) with varying degrees of experience of managing CRS were interviewed, along with 9 patients and 3 caregivers (associated diagnoses: NHL, n=6; MM, n=5; acute lymphocytic leukemia, n=1). All patients had experienced CRS (Grade 1-3) as a result of CAR T-cell (n=6) or bispecific antibody (n=3) therapy. Insights were based on five focus areas: 1) patient education and information; 2) CRS diagnosis and management; 3) CRS in different healthcare archetypes; 4) digital literacy and the role of technology in mitigating/monitoring/managing CRS; and 5) the caregiver perspective. CRS education was a primary unmet need, but overall awareness and knowledge of CRS was strong among the patient sample. Patients noted the life-threatening potential of CRS, but preferred to be on active treatment. HCP communication to patients focused on CRS being an expected occurrence rather than a marker of treatment failure, the need for in-patient admission in some cases and/or close monitoring, and the critical role of caregivers. Generally, HCPs were familiar with CRS and the procedures for its monitoring and management, but the variability in time to onset, severity of symptoms, and potential impact on quality of life (QOL) warranted caution. Logistics emerged as a common barrier, with CRS treatment often administered at major hospitals, as local, community-based clinics do not currently have the required capacity/capability to manage CRS; this could be achieved via the provision of training and support. Uncertainty remains regarding the broader roll out of bispecific antibodies, given the variability in CRS treatment between countries. Patients, HCPs and caregivers were aligned on their preferences for remote monitoring for CRS. All three groups expressed the need for simple, easy-to-use solutions that integrate seamlessly with existing systems and do not cause undue concern with false alarms, complex technical set-up and patient user experience. Patients emphasized the need for prompt and assured access to their medical team in case of an emergency. HCPs expressed a range of opinions on the feasibility of adopting such solutions. Some were open to using new tools and saw the potential for alleviating resource challenges. Others had reservations about interoperability and questions around over-informing patients with detailed data. Patients were open to adopting new technologies, if they added tangible benefit to their QOL, avoided additional logistical burden and improved their experience. Conclusions: There is strong awareness among patients, caregivers, and HCPs of the risks associated with CRS and the potential impact on QOL. HCPs with experience in administering cellular immunotherapies are confident in monitoring and managing CRS; however, its unpredictability and logistical burden need to be addressed. There is value in adopting digital solutions for CRS monitoring and management. Concerns remain around interoperability, data stewardship, and integration and validation within current hospital systems. Patients' concerns regarding the useability of such digital solutions and assured data privacy also need to be addressed as part of solution development in the CRS space.
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 | 0,003 | 0,008 |
| 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 | 0,004 | 0,002 |
| Communication savante | 0,003 | 0,002 |
| Science ouverte | 0,000 | 0,004 |
| Intégrité de la recherche | 0,001 | 0,002 |
| 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 ».