Table 1.
Inclusion Criteria | |
---|---|
Populations | Patients with NF1 with PN |
Patients with NF1 without PN | |
Outcomes | Disease overview |
Demographics | |
Clinical characteristics | |
Disease progression/natural history | |
Disease complications | |
Impact on patient functioning and health-related quality of life | |
Mortality/survival | |
Treatment | |
Practice patterns/treatment patterns | |
Medications | |
Surgery | |
Resource-use estimates | |
Drug utilization | |
Outpatient and emergency department visits | |
Imaging costs (eg, MRI, CT, PET) | |
Number of hospitalizations and length of stay | |
Management of drug-related adverse events | |
Direct costs | |
Medication costs | |
Outpatient visit costs | |
Hospitalization costs | |
Emergency department visits | |
Laboratory costs | |
Diagnostic costs | |
Physician costs | |
Costs of managing drug-related adverse events | |
Indirect or other costs of interest, including the following | |
Productivity loss of patient (wages lost from absences) | |
Out-of-pocket expenses | |
Travel costs for patient | |
Caregiver burden | |
Time | The database searches will be performed for the past 10 years, except for disease overview, which will be for the past 5 years |
Study design | Prospective (including clinical trials), retrospective, cross-sectional, or other studies |
Systematic literature reviews | |
Other | Electronic database searches will be limited to articles published in the English language |
Abbreviations: CT, computed tomography; MRI, magnetic resonance imaging; NF1, neurofibromatosis type 1; PET, positron emission tomography; PN, plexiform neurofibroma.