Cystic Fibrosis Care in Children with Autism Spectrum Disorders: Case Reports and Key Strategies
Bibliographic record
Abstract
Background: Patients with autism spectrum disorders (ASD) present a wide range of social and sensorial atypicalities, which represent limitations to the optimal care of co-existing health conditions. Cystic fibrosis (CF) is a multisystemic chronic disease requiring a life-long, cumbersome therapy. When a child has both CF and ASD, not only the parents have to cope with two life-changing diagnostics but also the medical team has to revise the applicability of therapeutic standards. To this day, there has been few research about this problematic and there are no recommendations for the care of this rare and vulnerable population of patients. Aims: Firstly, to highlight recurrent limitations to CF treatment in children with ASD through literature review and the description of four clinical situations. Secondly, to propose leads to help health providers optimize the care of these patients. Methods: We performed a literature review on PubMed using MESH and free terms as “cystic fibrosis”, “autism spectrum disorder”, “chronic disease”, and/or “neurodevelopmental disorder” between 2021 and 2022. We then described the clinical follow-up of four paediatric patients diagnosed with CF and ASD. We used medical records for patients 1 and 2 followed at the CHUV Lausanne, and information given by the parents per email for patients 3 and 4 followed at the CHU Sainte-Justine-Montreal-Canada. We conducted one-hour semi- structured interviews with the mothers of these patients, following a previously established questionnaire about challenges and facilitators. Findings: All four patients encountered difficulties in their CF trajectory, regarding daily medication, physiotherapy, diet, physical examinations, outpatient consultations and/or hospitalizations. The medical team could not strictly respect the standards of care for CF and had to implement individual solutions in collaboration with the families. Investigating the child’s sensory profile, communicating in a concise, visual way and offering predictability are core principles that should represent a basis of standard care in these complex situations. Conclusion: Due to their sensorial and communicational issues, paediatric patients with ASD face recurrent obstacles in the management of CF. There is a need for standardized health protocols based on communication supports, environment adaptation needs, and on the child’s individual specificities to improve adherence and tolerance of chronic illness treatment.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.006 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.004 | 0.002 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.003 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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 source (direct Gemma or distilled Codex), 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".