Please use this identifier to cite or link to this item: http://hdl.handle.net/2440/117997
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Type: Journal article
Title: Engagement of Canadian patients with rare diseases and their families in the lifecycle of therapy: a qualitative study
Author: Young, A.
Menon, D.
Street, J.
Al-Hertani, W.
Stafinski, T.
Citation: The Patient, 2018; 11(3):353-359
Publisher: Springer Verlag
Issue Date: 2018
ISSN: 1178-1661
1178-1661
Statement of
Responsibility: 
Andrea Young, Devidas Menon, Jackie Street, Walla Al_Hertani, Tania Stafinski
Abstract: Patient involvement is increasingly recognized as critical to the development, introduction and use (i.e. the lifecycle) of new and effective therapies, particularly those for rare diseases, where natural histories and the impact on patients and families are less well-understood than for common diseases. However, little is known about how patients and families would like to be involved during the lifecycle.The aim of this study was to explore ways in which Canadian patients with rare diseases and their families would like to be involved in the lifecycle of therapies and identify their priorities for involvement.Patients with rare diseases and their families were recruited to participate in two deliberative sessions, during which concepts related to decision-making uncertainty and the technology lifecycle were introduced before eliciting input around ways in which they could be involved. This was followed by a webinar, which was used to further identify opportunities for involvement. The data were then analyzed qualitatively using eclectic coding.Patients and families identified opportunities that fell into three goals: (1) incorporation of their 'lived experience' in coverage decision making (i.e. decisions by governments on funding new therapies); (2) improved care for patients; and (3) greater awareness of rare diseases, with the first being a priority.Opportunities for patients and families to contribute their 'lived experience' are needed throughout the orphan drug lifecycle, but the ideal mechanisms for providing this input have yet to be determined.
Keywords: Humans; Rare Diseases; Complementary Therapies; Family; Decision Making; Qualitative Research; Adult; Aged; Aged, 80 and over; Middle Aged; Canada; Female; Male; Patient Preference
Rights: © Springer International Publishing AG, part of Springer Nature 2018
RMID: 0030080911
DOI: 10.1007/s40271-017-0293-1
Appears in Collections:Public Health publications

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