Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden

David T. Eton; Kathleen J. Yost; Jin shei Lai; Jennifer L. Ridgeway; Jason S. Egginton; Jordan K. Rosedahl; Mark Linzer; Deborah H. Boehm; Azra Thakur; Sara Poplau; Laura Odell; Victor M. Montori; Carl R. May; Roger T. Anderson

doi:10.1007/s11136-016-1397-0

Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden

David T. Eton, Kathleen J. Yost, Jin shei Lai, Jennifer L. Ridgeway, Jason S. Egginton, Jordan K. Rosedahl, Mark Linzer, Deborah H. Boehm, Azra Thakur, Sara Poplau, Laura Odell, Victor M. Montori, Carl R. May, Roger T. Anderson

Medicine - Geriatrics, Palliative and Primary Care (GPPC)

Research output: Contribution to journal › Article › peer-review

107 Scopus citations

Abstract

Purpose: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden—the Patient Experience with Treatment and Self-management (PETS). Methods: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. Results: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79–0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). Conclusion: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.

Original language	English (US)
Pages (from-to)	489-503
Number of pages	15
Journal	Quality of Life Research
Volume	26
Issue number	2
DOIs	https://doi.org/10.1007/s11136-016-1397-0
State	Published - Feb 1 2017

Bibliographical note

Funding Information:
The research reported in this manuscript was supported by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R21NR012984. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We thank Ms. Ann Harris and personnel in the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of the survey battery.

Publisher Copyright:
© 2016, Springer International Publishing Switzerland.

Keywords

Adherence
Multi-morbidity
Questionnaire
Self-management
Treatment burden
Validation

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1007/s11136-016-1397-0

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5753596

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Eton, D. T., Yost, K. J., Lai, J. S., Ridgeway, J. L., Egginton, J. S., Rosedahl, J. K., Linzer, M., Boehm, D. H., Thakur, A., Poplau, S., Odell, L., Montori, V. M., May, C. R., & Anderson, R. T. (2017). Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489-503. https://doi.org/10.1007/s11136-016-1397-0

Eton, DT, Yost, KJ, Lai, JS, Ridgeway, JL, Egginton, JS, Rosedahl, JK, Linzer, M, Boehm, DH, Thakur, A, Poplau, S, Odell, L, Montori, VM, May, CR & Anderson, RT 2017, 'Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden', Quality of Life Research, vol. 26, no. 2, pp. 489-503. https://doi.org/10.1007/s11136-016-1397-0

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title = "Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden",

abstract = "Purpose: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden—the Patient Experience with Treatment and Self-management (PETS). Methods: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. Results: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79–0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). Conclusion: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.",

keywords = "Adherence, Multi-morbidity, Questionnaire, Self-management, Treatment burden, Validation",

author = "Eton, {David T.} and Yost, {Kathleen J.} and Lai, {Jin shei} and Ridgeway, {Jennifer L.} and Egginton, {Jason S.} and Rosedahl, {Jordan K.} and Mark Linzer and Boehm, {Deborah H.} and Azra Thakur and Sara Poplau and Laura Odell and Montori, {Victor M.} and May, {Carl R.} and Anderson, {Roger T.}",

note = "Funding Information: The research reported in this manuscript was supported by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R21NR012984. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We thank Ms. Ann Harris and personnel in the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of the survey battery. Publisher Copyright: {\textcopyright} 2016, Springer International Publishing Switzerland.",

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T1 - Development and validation of the Patient Experience with Treatment and Self-management (PETS)

T2 - a patient-reported measure of treatment burden

AU - Eton, David T.

AU - Yost, Kathleen J.

AU - Lai, Jin shei

AU - Ridgeway, Jennifer L.

AU - Egginton, Jason S.

AU - Rosedahl, Jordan K.

AU - Linzer, Mark

AU - Boehm, Deborah H.

AU - Thakur, Azra

AU - Poplau, Sara

AU - Odell, Laura

AU - Montori, Victor M.

AU - May, Carl R.

AU - Anderson, Roger T.

N1 - Funding Information: The research reported in this manuscript was supported by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R21NR012984. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We thank Ms. Ann Harris and personnel in the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of the survey battery. Publisher Copyright: © 2016, Springer International Publishing Switzerland.

PY - 2017/2/1

Y1 - 2017/2/1

N2 - Purpose: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden—the Patient Experience with Treatment and Self-management (PETS). Methods: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. Results: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79–0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). Conclusion: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.

AB - Purpose: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden—the Patient Experience with Treatment and Self-management (PETS). Methods: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. Results: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79–0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). Conclusion: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.

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KW - Multi-morbidity

KW - Questionnaire

KW - Self-management

KW - Treatment burden

KW - Validation

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Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden

Abstract

Bibliographical note

Keywords

UN SDGs

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