This questionnaire is based on the definition of the concept of “needs” as described in the research paper "The needs of parents and caregivers of children with PIBO". It is of practical relevance to investigate the needs of parents and caregivers of children with PIBO in order to determine to what extent the standards, activities, information provision and follow-up research of professional healthcare providers are aligned with those needs.
In addition, this study provides insight and knowledge for the medical network involved in developments relating to rare lung diseases in general and PIBO in particular, contributes to (online) information provision for interested parties and stakeholders, and may potentially lead to future research lines, academic initiated and/or sponsored by private parties.
The questionnaire has been structured on the basis of the phases experienced by the patient and their parents and/or caregivers in relation to PIBO: diagnosis, treatment and care. The diagnosis phase refers to the period from the moment of the infection that may or may not have contributed to PIBO up to and including the actual diagnosis of PIBO. The ‘treatment phase' refers to the period during which the patient is treated, such as systemic corticosteroids (methylprednisolone) or others for the first time. This generally takes place within the first year after diagnosis. The “care phase” refers to the period following the previous treatment phase.
The PIBO Foundation thanks you in advance for your time and effort answering this questionnaire.
