What is feasible when it comes to monitoring young people with cystic fibrosis at home? The results of the climb CF study
Notice bibliographique
Résumé
Introduction: There are >350,000 health apps available on app stores across the world however CF is usually assessed at hospital visits It is unclear whether monitoring children with CF at home is feasible or useful With the advent of COVID-19 home monitoring has become more necessary Here we report the results of the CLIMB-CF study which explored the feasibility of home monitoring and potential obstacles Methods: We designed a study-specific application with input from the CF Trust Youth Advisor Group, and enrolled participants aged 2 to 17 years of age across mulitple sites in the UK and Canada for 6 months They were asked to complete measures either daily (wellness, cough severity, appetite, sputum volume, breathlessness and tiredness scores, heart rate, oxygen saturations, temperature, respiratory rate, activity and sleep disturbances) or twice a week (weight, and lung function if >5 years of age) After 2 months participants were also given the option to collect samples at home (urine, nasal secretions, sputum, throat swabs and dried blood spots [DBS]) At the end of the study parents and participants over 12 completed feasibility questionnaires Results: Of 148 (aim was 160), 2 withdrew prior to starting due to social issues, 2 failed to achieve clinical stability and 8 withdrew during the study Median age of the participants was 7 9 years and 82 (57%) were female Over the 6 months the median completion of all measures was 40 1% (13 6-69 9%) 2 to 5 year olds completed 54 4% (20 5-77%), 6 to 11 year olds 45 8% (27 0-71 6%) and young people over 12 completed only 15 6% (9 8-30 0%) 77 5% of all participants contacted the study team for technical help at least once One participant withdrew due to frustration with a piece of equipment Parents who felt home monitoring did not, or only slightly interfered with their usual activities completed 52% (28 3- 77 6%) of measures compared with those perceiving a heavier burden, 29 9% (9 2-74 5%) Participants over 12 who felt home monitoring did not interfere with their usual activities completed 37 8% (14 5-73 2%) of measures compared to only 9 6% (5 6-22 3%) of measures if they felt it moderately interfered 73 5% of parents found the ability to monitor their child's health very helpful or helpful Teenagers felt that sputum collection, nasal secretion collection and DBS collection and spirometry were least acceptable Discussion: The majority of participants and parents felt home monitoring did not negatively impact their lives When designing future home monitoring applications those participants who felt home monitoring did not impact their daily lives completed more measures Teenagers entered less data than younger children;even if they perceived home monitoring was not having a significant impact on their daily lives, completion rates were poor Interestingly, spirometry was one of the measures teenagers found least acceptable A significant proportion of our participants required technical help during the study Our findings should impact on future home monitoring strategies
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 tête enseignante, 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 ».