Questionnaire on the clinical praxis of percutaneous endoscopic gastrostomy insertion in patients with autosomal recessive polycystic kidney disease (ARPKD)
- Conditions
- Q61.1Polycystic kidney, autosomal recessive
- Registration Number
- DRKS00011012
- Lead Sponsor
- niversitätsklinikum Köln
- Brief Summary
Extract from published paper: 196 participants from 39 countries shared their opinion. 45% of participants support gastrostomy insertion in all ARPKD patients, but portal hypertension is considered to be a contraindication by a subgroup of participants. Patient-specific data was provided for 38 patients indicating complications of gastrostomy that were in principal comparable to non-ARPKD patients. Bleeding episodes were reported in 3/38 patients (7.9%). Two patients developed additional severe complications. Gastrostomy was retrospectively considered as the right decision for the patient in 35/38 (92.1%) of the cases.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Complete
- Sex
- All
- Target Recruitment
- 196
The interviewed colleagues work at centers for pediatric nephrolgy or pediatric hepatology in Europe and diagnosed ARPKD due to clinical criteria in the patients. The data of ARPKD patients are questioned in an anonymous and retrospective manner.
not willing to participate
Study & Design
- Study Type
- observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method It is the aim of the questionnaire to collect data regarding the current practice of PEG (percutaneous endoscopic gastrostomy) implantations in ARPKD (autosomal recessive polycystic kidney disease) patients in European pediatric centers and the experiences obtained. Benefit and risks of the intervention are evaluated in a retrospective manner in order to create first evidence regarding this important therapy in patients suffering from this serious disease of early childhood.
- Secondary Outcome Measures
Name Time Method