Challenges facing parents/caregivers of children with interstitial lung disease (chILD): international survey (original) (raw)

Paediatric respiratory epidemiology, 2018

Abstract

Introduction: The ERS Clinical Research Collaboration (CRC) for chILD aims to develop critical interest in these rare diseases among early career clinicians, researchers, scientists and industry. Patient involvement is integral and through partnering with the chILD Lung Foundation, Starke Lunge Foundation and European Lung Foundation, patient/parent contacts globally are being strengthened. Methods: To understand challenges that parents face and to inform activities, a mixed methods survey was devised and made available online in 9 languages from August - November 2017. Results: 156 respondents from 13 countries responded relating to the following chILD conditions: neuroendocrine cell hyperplasia (NEHI) (39%), undiagnosed/unknown (20%), bronchiolitis obliterans (15%), surfactant dysfunction mutations (SPC, ABCA3) (13%), pulmonary interstitial glycogenosis (PIG) (6%) and other (7%). Described by one responder as ‘a very lonely disease’, the most challenging aspects were: not knowing how the disease will progress (82%), anxiety/depression (74%), time management (67%), daily activities (64%) and feeding issues (60%). On rating aspects of treatment and care, 100% wanted better clinicians working interaction; 94% to know how to get a second opinion and 80% the option for genetic counselling. More availability of online information was requested by 95%. Future research direction included causes, genetics, risk factors, diagnostics and new treatments and reduction of impact of the condition on patients over the long-term. Conclusion: These findings will inform CRC activities and research going forward. Online information, clinical networks and industry links are in active development

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