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

David T Eton^{1

2}, Kathleen J Yost^{3

4}, Jin-Shei Lai⁵, Jennifer L Ridgeway^{6

3}, Jason S Egginton^{6

3}, Jordan K Rosedahl^{3

7}, Mark Linzer⁸, Deborah H Boehm⁹, Azra Thakur¹⁰, Sara Poplau⁹, Laura Odell¹¹, Victor M Montori^{6

12}, Carl R May^{12

13}, Roger T Anderson¹⁴

Affiliations

¹ Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.
² Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.
³ Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁴ Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁵ Department of Medical Social Sciences, Northwestern University School of Medicine, 633 St. Clair, 19th Floor, Chicago, IL, USA.
⁶ Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁷ Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁸ Hennepin County Medical Center, 701 Park Avenue, Minneapolis, MN, USA.
⁹ Minneapolis Medical Research Foundation, 701 Park Avenue, Minneapolis, MN, USA.
¹⁰ Amherst H. Wilder Foundation, 451 Lexington Parkway N, Saint Paul, MN, 55104, USA.
¹¹ Pharmacy Services, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
¹² Knowledge Evaluation Research Unit, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
¹³ Faculty of Health Sciences, University of Southampton, Southampton, UK.
¹⁴ Department of Public Health Sciences, University of Virginia School of Medicine, 6203E, West Complex, Charlottesville, VA, USA.

PMID: 27566732
PMCID: PMC5753596
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 et al. Qual Life Res. 2017 Feb.

. 2017 Feb;26(2):489-503.

doi: 10.1007/s11136-016-1397-0. Epub 2016 Aug 26.

Authors

Affiliations

¹ Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.
² Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. eton.david@mayo.edu.
³ Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁴ Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁵ Department of Medical Social Sciences, Northwestern University School of Medicine, 633 St. Clair, 19th Floor, Chicago, IL, USA.
⁶ Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁷ Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
⁸ Hennepin County Medical Center, 701 Park Avenue, Minneapolis, MN, USA.
⁹ Minneapolis Medical Research Foundation, 701 Park Avenue, Minneapolis, MN, USA.
¹⁰ Amherst H. Wilder Foundation, 451 Lexington Parkway N, Saint Paul, MN, 55104, USA.
¹¹ Pharmacy Services, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
¹² Knowledge Evaluation Research Unit, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
¹³ Faculty of Health Sciences, University of Southampton, Southampton, UK.
¹⁴ Department of Public Health Sciences, University of Virginia School of Medicine, 6203E, West Complex, Charlottesville, VA, USA.

PMID: 27566732
PMCID: PMC5753596
DOI: 10.1007/s11136-016-1397-0

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.

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Conflict of interest statement

Conflict of interest: The authors declare that they have no conflicts of interest.

Figures

**Fig. 1. Mean PETS domain score comparisons by health literacy with 95% confidence intervals**

**Fig. 2. Mean PETS domain score comparisons by medication adherence with 95% confidence intervals**

**Fig. 3. Mean PETS domain score comparisons by self-reported financial difficulties with 95% confidence intervals**

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical