Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey

202311 citationsJournal Articlegold Open Access

Authors

Hanna Skrobanski · Lloyd's

Kishan Vyas

Sally Bowditch

Lena Hubig · Lloyd's

Edward Dziadulewicz

Louise Fish · Tuberous Sclerosis Association

Pooja Takhar · Tuberous Sclerosis Association

Siu Hing Lo · Lloyd's

Abstract

Caregivers largely feel involved in treatment decisions, and the majority were satisfied with healthcare services for children with TSC. However, many highlighted the need for an improved transition from pediatric to adult healthcare services. The survey also showed that COVID-19 has considerably affected caregivers and individuals with TSC.

Topics & Keywords

Tuberous Sclerosis Complex Research Polyomavirus and related diseases Tumors and Oncological Cases

Publication Details

Published in: Orphanet Journal of Rare Diseases

Volume 18, Issue 1, pp. 78-78

DOI: 10.1186/s13023-023-02677-7

Field-Weighted Citation Impact: 1.95

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Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey

Authors

Abstract

Topics & Keywords

Publication Details