What is feasible when it comes to monitoring young people with cystic fibrosis at home? The results of the climb CF study
Bibliographic record
Abstract
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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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".