"The whole game is changing and you’ve got hope”: Australian perspectives on treatment decision-making in Spinal Muscular Atrophy

Farrar, M; Carey, K; Paguinto, SG; Kasparian, NA; De Abreu Lourenco, R

"The whole game is changing and you’ve got hope”: Australian perspectives on treatment decision-making in Spinal Muscular Atrophy

Farrar, M Carey, K Paguinto, SG Kasparian, NA De Abreu Lourenco, R

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Publisher:: Springer Verlag
Publication Type:: Journal Article
Citation:: The Patient: Patient Centered Outcomes Research, 2020, 13, (4), pp. 389-400
Issue Date:: 2020

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Field	Value	Language
dc.contributor.author	Farrar, M
dc.contributor.author	Carey, K
dc.contributor.author	Paguinto, SG
dc.contributor.author	Kasparian, NA
dc.contributor.author	De Abreu Lourenco, R https://orcid.org/0000-0002-5978-8774
dc.date.accessioned	2021-02-04T23:10:46Z
dc.date.available	2021-02-04T23:10:46Z
dc.date.issued	2020
dc.identifier.citation	The Patient: Patient Centered Outcomes Research, 2020, 13, (4), pp. 389-400
dc.identifier.issn	1178-1653
dc.identifier.issn	1178-1661
dc.identifier.uri	http://hdl.handle.net/10453/145848
dc.description.abstract	INTRODUCTION:The natural history and treatment of spinal muscular atrophy (SMA) is currently being transformed by the development and availability of novel therapies, with significant related changes in practice. This not only has important implications for the health and wellbeing of patients with SMA and their families, as well as improves the quality of care. OBJECTIVE:The present study aimed to investigate the processes and factors that influence treatment and healthcare decisions for children and adults with SMA and their families and healthcare providers. METHODS:Four focus groups comprising adults, or parents of children and adolescents, with SMA and an expert panel of healthcare providers (N = 25) explored experiences of SMA, its treatment and related decision making and expectations for future care. Group discussions were recorded and transcribed verbatim for thematic analysis using NVivo12.0. RESULTS:People with SMA, their families and healthcare providers described confronting complex healthcare decisions in the context of a rapidly changing SMA treatment environment. Across all groups, five key themes were identified: hope, yearning and searching, patient-centred care and support, community and a sense of connectedness and weighing up potential treatment benefits and costs. Essential to these themes was the notion of what it means to live with SMA and complexities relating to 'quality of life'. CONCLUSION:Identifying and more deeply understanding the factors that influence patient, family and healthcare providers' decision making regarding SMA treatment is an important first step in improving the quality of patient- and family-centred care and in informing clinical practice and future health policy incorporating personalized medicine and optimal supportive and mental health care.
dc.format	Print
dc.language	eng
dc.publisher	Springer Verlag
dc.relation	Sydney Children's Hospital
dc.relation.ispartof	The Patient: Patient Centered Outcomes Research
dc.relation.isbasedon	10.1007/s40271-020-00415-w
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	11 Medical and Health Sciences
dc.title	"The whole game is changing and you’ve got hope”: Australian perspectives on treatment decision-making in Spinal Muscular Atrophy
dc.type	Journal Article
utslib.citation.volume	13
utslib.location.activity	New Zealand
utslib.for	11 Medical and Health Sciences
pubs.organisational-group	/University of Technology Sydney/Faculty of Business
pubs.organisational-group	/University of Technology Sydney/Strength - CHERE - Centre for Health Economics Research and Evaluation
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney
utslib.copyright.status	closed_access	*
pubs.consider-herdc	true
dc.date.updated	2021-02-04T23:10:29Z
pubs.issue	4
pubs.publication-status	Published
pubs.volume	13
utslib.citation.issue	4

Abstract:

INTRODUCTION:The natural history and treatment of spinal muscular atrophy (SMA) is currently being transformed by the development and availability of novel therapies, with significant related changes in practice. This not only has important implications for the health and wellbeing of patients with SMA and their families, as well as improves the quality of care. OBJECTIVE:The present study aimed to investigate the processes and factors that influence treatment and healthcare decisions for children and adults with SMA and their families and healthcare providers. METHODS:Four focus groups comprising adults, or parents of children and adolescents, with SMA and an expert panel of healthcare providers (N = 25) explored experiences of SMA, its treatment and related decision making and expectations for future care. Group discussions were recorded and transcribed verbatim for thematic analysis using NVivo12.0. RESULTS:People with SMA, their families and healthcare providers described confronting complex healthcare decisions in the context of a rapidly changing SMA treatment environment. Across all groups, five key themes were identified: hope, yearning and searching, patient-centred care and support, community and a sense of connectedness and weighing up potential treatment benefits and costs. Essential to these themes was the notion of what it means to live with SMA and complexities relating to 'quality of life'. CONCLUSION:Identifying and more deeply understanding the factors that influence patient, family and healthcare providers' decision making regarding SMA treatment is an important first step in improving the quality of patient- and family-centred care and in informing clinical practice and future health policy incorporating personalized medicine and optimal supportive and mental health care.

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http://hdl.handle.net/10453/145848