Quality of Life and care situation in Tuberous Sclerosis

Conditions

Q85.1 G40

Willems LM, Schubert-Bast S, Grau J, Hertzberg C, Kurlemann G, Wiemer-Kruel A, Bast T, Bertsche A, Bettendorf U, Fiedler B, Hahn A, Hartmann H, Hornemann F, Immisch I, Jacobs J, Kieslich M, Klein KM, Klotz KA, Kluger G, Knuf M, Mayer T, Marquard K, Meyer S, Muhle H, Müller-Schlüter K, Noda AH, Ruf S, Sauter M, Schlump JU, Syrbe S, Thiels C, Trollmann R, Wilken B, Zöllner JP, Rosenow F, Strzelczyk A.

2021-10-0718 citations

10.1016/j.ejpn.2021.10.003

Quality of life and its predictors in adults with tuberous sclerosis complex (TSC): a multicentre cohort study from Germany

Johann Philipp Zöllner, Nadine Conradi, Matthias Sauter, Markus Knuf, Susanne Knake et al. (24 authors)

Neurological Research and Practice2021-06-2831 citations

10.1186/s42466-021-00130-3

Direct and indirect costs and cost-driving factors of Tuberous sclerosis complex in children, adolescents, and caregivers: a multicenter cohort study

Janina Grau, Johann Philipp Zöllner, Susanne Schubert‐Bast, Gerhard Kurlemann, Christoph Hertzberg et al. (36 authors)

Orphanet Journal of Rare Diseases2021-06-2125 citations

10.1186/s13023-021-01899-x

Direct and indirect costs and cost-driving factors in adults with tuberous sclerosis complex: a multicenter cohort study and a review of the literature.

Zöllner JP, Grau J, Rosenow F, Sauter M, Knuf M, Kurlemann G, Mayer T, Hertzberg C, Bertsche A, Immisch I, Klein KM, Knake S, Marquard K, Meyer S, Noda AH, von Podewils F, Schäfer H, Thiels C, Willems LM, Zukunft B, Schubert-Bast S, Strzelczyk A.

2021-06-0215 citations

10.1186/s13023-021-01838-w

Interventions

Group 1: Patients with TSC (ICD-10 Q85.1) Use of Patient questionnaires

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: ICD-10 diagnosis Q85.1

Exclusion criteria

Exclusion criteria: None

Design outcomes

Primary

Measure	Time frame
Cost of illness (Questionnaires for health care resource utilization over 3 to 12 month period)	—

Secondary

Measure	Time frame
Quality of Life (KINDL, BDI-II (Beck Depression Inventory), Qolie-31 (Quality of Life in Epilepsy))	—

Countries

Germany

Contacts

Public ContactAdam Strzelczyk

Epilepsiezentrum Frankfurt Rhein-Main

strzelczyk@med.uni-frankfurt.de+49-69-6301-7466

Outcome results

None listed