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Known-groups validity and responsiveness to change of the Patient Experience with Treatment and Self-management (PETS vs. 2.0): a patient-reported measure of treatment burden

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Abstract

Purpose

The purpose of this study was to test the known-groups validity and responsiveness to change of the Patient Experience with Treatment and Self-management (PETS, vs. 2.0), a measure of treatment burden.

Methods

The PETS and other standard measures were mailed at baseline and 12-month follow-up to adults living with multiple chronic conditions in southeast Minnesota (USA). A sample of 365 people (mean age = 62.1 years) completed both surveys. Baseline, 12-month, and changes in PETS burden scores were examined. Clinical anchors used to test validity included number of diagnoses (2–4 vs. 5+), mental health diagnosis (yes/no), medication adherence and health literacy (suboptimal/optimal), and changes in self-efficacy, global physical, and global mental health (worsening/improving). Independent-samples t-tests were used to compare scores.

Results

PETS scales showed good internal consistency (αs ≥ 0.80). There were few differences across number of diagnoses, but having a mental health diagnosis was associated with higher baseline PETS burden scores (Ps < .05). Suboptimal medication adherence and health literacy over time were associated with worse 12-month PETS burden scores (Ps < .05). Compared with improvements, declines over time in self-efficacy, global physical health, and global mental health were each associated with worsening change scores on PETS impact summary, medical expenses, and bother due to medication reliance and medication side effects (Ps < .05).

Conclusion

Among multi-morbid adults, the PETS demonstrated evidence of known-groups validity and responsiveness to change across both objective (e.g., mental health diagnoses) and subjective anchors (e.g., changes in self-efficacy, global physical, and global mental health).

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Availability of data and material

De-identified data can be made available upon reasonable request of the principal investigator (D. Eton), pending approval by the Mayo Foundation for Medical Education and Research. All requests will be reviewed. The PETS measure is available by request to D. Eton.

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Acknowledgements

We thank Ms. Ann Harris and Ms. Wendy Daniels at the Mayo Clinic Survey Research Center for formatting, distribution, and receipt of the survey. We also thank Ms. Kandace Lackore, Ms. Sarah Jenkins, and Mr. Richard Pendegraft for database support, Ms. Bayly Bucknell for study coordination; and Ms. Karen Bell and Mr. Mark Korinek for assistance with formatting and design of the final manuscript.

Funding

The study was funded by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R01NR015441 (D. Eton, Principal Investigator). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Authors and Affiliations

  1. Department of Health Sciences Research, Mayo Clinic, 200 First St SW, Harwick Building, Rochester, MN, 55905, USA

    David T. Eton & Jennifer L. St. Sauver

  2. Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA

    David T. Eton, Minji K. Lee & Jennifer L. St. Sauver

  3. Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, VA, USA

    Roger T. Anderson

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  1. David T. Eton
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Contributions

Study concept and design: DE, JS; Acquisition of data: DE, JS; Analysis and interpretation of data: DE, ML, JS, RA; Statistical analysis: DE, ML; Funding acquisition: DE; Study supervision: DE. Each author contributed important intellectual content during manuscript drafting and revision and accepts accountability for the overall work produced.

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Correspondence to David T. Eton.

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The authors declare that they have no conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Signed informed consent was not required as the study was approved as minimal risk with oral consent by both the Mayo Clinic and Olmsted Medical Center Institutional Review Boards. Oral consent was provided in the form of a cover letter describing the survey procedures and consent to participate was implied based on the return of a completed survey.

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Eton, D.T., Lee, M.K., St. Sauver, J.L. et al. Known-groups validity and responsiveness to change of the Patient Experience with Treatment and Self-management (PETS vs. 2.0): a patient-reported measure of treatment burden. Qual Life Res 29, 3143–3154 (2020). https://doi.org/10.1007/s11136-020-02546-x

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