The lived experiences of people with progressive supranuclear palsy and their caregivers
The lived experiences of people with progressive supranuclear palsy and their caregivers
Introduction: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder initially characterised by disturbances in gait, balance and posture, with death occurring after several years of progressive physical and cognitive decline. This, along with a low index of suspicion, a high degree of diagnostic uncertainty and no approved treatment options, greatly impacts the lives of patients and caregivers. This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs. Methods: A literature search and qualitative interviews with six PSP experts were conducted to map the clinical pathway and identify breakpoints. The pathway was validated by key opinion leaders in seven countries. Qualitative research was conducted over 6 months in seven countries with PSP stakeholders (N = 112) to explore the emotional journey. The approach included self-ethnography, 60-min telephone interviews and the completion of 7-day smartphone diaries. Results: The current PSP clinical journey can take many different pathways, with patients cycling through the healthcare system before a correct referral is made and a possible/probable diagnosis received. Breakpoints contribute to delays in accessing appropriate clinical care, a high degree of diagnostic divergence and suboptimal management of the disease. The emotional journey is dominated by negative feelings, although some moments of positivity were noted. The research highlighted a lack of disease understanding amongst all stakeholders and a lack of support for patients/caregivers. The authors make a number of recommendations for care improvements, including longer consultation times, closer collaboration among healthcare professionals and patient organisations, and more varied support and information for patients/caregivers. Conclusion: This work represents a major collaborative effort to understand the lived experience of PSP. The research illustrates that a coordinated effort from all stakeholders is required to address ongoing needs and challenges within PSP.
Clinical journey, Emotional journey, Lived experience, Neurodegenerative disorder, Progressive supranuclear palsy, Quality of life, Unmet need
229-247
Respondek, Gesine
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Breslow, Diane
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Amirghiasvand, Carol
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Ghosh, Boyd
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Bergmans, Bruno
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Wyk, Leigh van
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Irfan, Tim
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Dossin, Robert
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Vanderavero, Cecile
d825a13e-1ab6-4813-8617-12fa1a5f9596
1 February 2023
Respondek, Gesine
27e7542e-add8-4ca0-91b5-e56c5f07b021
Breslow, Diane
4e5830e9-7d3a-4c72-8a03-0b4e1665a225
Amirghiasvand, Carol
551e7577-1338-4213-a265-6bb957f3cfa8
Ghosh, Boyd
a8a75ce9-2c20-4894-a200-916abad8db01
Bergmans, Bruno
5015b302-ae8c-46ed-84a4-3e38b5a3f74b
Wyk, Leigh van
e6287bb6-c7b1-4e08-97ef-0a721cfde41a
Irfan, Tim
79c35781-b1d7-4408-adab-45e2a5f6b02a
Dossin, Robert
477756d9-b6af-437a-a348-6e36ef2a0d82
Vanderavero, Cecile
d825a13e-1ab6-4813-8617-12fa1a5f9596
Respondek, Gesine, Breslow, Diane, Amirghiasvand, Carol, Ghosh, Boyd, Bergmans, Bruno, Wyk, Leigh van, Irfan, Tim, Dossin, Robert and Vanderavero, Cecile
(2023)
The lived experiences of people with progressive supranuclear palsy and their caregivers.
Neurology and Therapy, 12, .
(doi:10.1007/s40120-022-00420-1).
Abstract
Introduction: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder initially characterised by disturbances in gait, balance and posture, with death occurring after several years of progressive physical and cognitive decline. This, along with a low index of suspicion, a high degree of diagnostic uncertainty and no approved treatment options, greatly impacts the lives of patients and caregivers. This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs. Methods: A literature search and qualitative interviews with six PSP experts were conducted to map the clinical pathway and identify breakpoints. The pathway was validated by key opinion leaders in seven countries. Qualitative research was conducted over 6 months in seven countries with PSP stakeholders (N = 112) to explore the emotional journey. The approach included self-ethnography, 60-min telephone interviews and the completion of 7-day smartphone diaries. Results: The current PSP clinical journey can take many different pathways, with patients cycling through the healthcare system before a correct referral is made and a possible/probable diagnosis received. Breakpoints contribute to delays in accessing appropriate clinical care, a high degree of diagnostic divergence and suboptimal management of the disease. The emotional journey is dominated by negative feelings, although some moments of positivity were noted. The research highlighted a lack of disease understanding amongst all stakeholders and a lack of support for patients/caregivers. The authors make a number of recommendations for care improvements, including longer consultation times, closer collaboration among healthcare professionals and patient organisations, and more varied support and information for patients/caregivers. Conclusion: This work represents a major collaborative effort to understand the lived experience of PSP. The research illustrates that a coordinated effort from all stakeholders is required to address ongoing needs and challenges within PSP.
Text
s40120-022-00420-1
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More information
Accepted/In Press date: 28 October 2022
e-pub ahead of print date: 29 November 2022
Published date: 1 February 2023
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Funding Information:
The study findings suggest that compared with other countries, patients/caregivers in Japan receive more information upon PSP diagnosis and better support options. In 2015, the Japanese government released its ‘New Orange Plan’ to prepare for a wave of dementia expected with an ageing population, followed by the Framework for Promoting Dementia Care in 2019, requiring government ministries to raise awareness of cognitive impairment across various societal sectors []. Moreover, the Japanese authorities encourage research into intractable diseases and the provision of financial support for affected patients []. In 2000, a nursing care insurance system was implemented, and in 2003 PSP was listed in the government’s Specified Disease Treatment Research Program, enabling patients to access publicly funded medical support []. We speculate that these initiatives could be driving the supportive nature of Japan’s healthcare system towards the patients with PSP and their caregivers observed in this study.
Publisher Copyright:
© 2022, The Author(s).
Keywords:
Clinical journey, Emotional journey, Lived experience, Neurodegenerative disorder, Progressive supranuclear palsy, Quality of life, Unmet need
Identifiers
Local EPrints ID: 477621
URI: http://eprints.soton.ac.uk/id/eprint/477621
PURE UUID: 10f8fc80-ece7-4a8a-8253-dbe9ecffd957
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Date deposited: 09 Jun 2023 16:52
Last modified: 17 Mar 2024 02:03
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Contributors
Author:
Gesine Respondek
Author:
Diane Breslow
Author:
Carol Amirghiasvand
Author:
Boyd Ghosh
Author:
Bruno Bergmans
Author:
Leigh van Wyk
Author:
Tim Irfan
Author:
Robert Dossin
Author:
Cecile Vanderavero
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