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Journal article

Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

Abstract

BackgroundSupport groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of …

Authors

Delisle VC; Gumuchian ST; Rice DB; Levis AW; Kloda LA; Körner A; Thombs BD

Journal

The Patient - Patient-Centered Outcomes Research, Vol. 10, No. 3, pp. 283–293

Publisher

Springer Nature

Publication Date

June 2017

DOI

10.1007/s40271-016-0213-9

ISSN

1178-1653