Pheochromocytomas and paragangliomas (PPGL) are rare tumors treated by surgical excision. During follow-up, more than 15% of patients will have recurrences in the form of new tumors, locoregional recurrence or metastases. This subgroup is initially not identifiable. It is therefore usual to perform annual monitoring of all patients throughout their lives by questioning and measuring blood pressure during a medical consultation and by measuring urinary or plasma metanephrines and normetanephrines. The main objective of this prospective monocentric study is to evaluate the reliability of an optimized remote monitoring program in comparison to a usual in-clinic monitoring of patients surgically-cured and tumor-free at the time of inclusion.
Patients will be included in a follow-up consultation or during a telephone contact prior to a consultation. The period of follow-up by internet and the date of the next consultation will be fixed. This assessment is annual according to current recommendations. In the two months prior to the consultation, patients will fill out a questionnaire and transcribe their blood pressure self-measurement results as well as their biological assessment on a dedicated, approved data-hosting platform (internet application named HERMES). During the consultation, these items will be collected again without the knowledge of the results entered by the patient on the data hosting site.
Study Type
OBSERVATIONAL
Enrollment
139
Use of an internet platform for remote monitoring of patients.
Hopital européen Georges Pompidou
Paris, France
RECRUITINGReliability of the program
Proportion of patients with a concordance score greater than or equal to 85% between the data collected in consultation and those entered by the patient via the optimized remote monitoring program
Time frame: 13 months
Reminders
Evaluate feasibility of the ability of patients to actively participate in their care pathway (self care; self monitoring): number of reminders.
Time frame: 13 months
Schedule compliance
Evaluate feasibility of the ability of patients to actively participate in their care pathway (self care; self monitoring): compliance with planned deadlines.
Time frame: 13 months
Data filling
Evaluate feasibility of the ability of patients to actively participate in their care pathway (self care; self monitoring): completion of questionnaires (clinical data, blood pressure measurement and biological results).
Time frame: 13 months
Acceptability
Evaluate patient acceptability and satisfaction with the use of the solution using a satisfaction questionnaire.
Time frame: 13 months
Lost to follow-up
Establishment of an e-cohort study to evaluate the rate of patients lost to follow-up compared to the historical cohort.
Time frame: 37 months
Prognostic factors for recurrence.
Establishment of an e-cohort study to look for prognostic factors for recurrence.
Time frame: 37 months
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