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

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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.

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Acknowledgments

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.

Funding

The study was funded by the National Institute of Nursing Research of the National Institutes of Health (USA) under award number R21NR012984, 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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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 Declaration of Helsinki and its later amendments or comparable ethical standards.

Informed consent

Signed informed consent was not required as the study was approved as exempt by both the Mayo and Hennepin County Medical Center Institutional Review Boards.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplement 1

[Online resource]. Drafting, reviewing, and pretesting the Patient Experience with Treatment and Self-Management (PETS) measure (PDF 87 kb)

Supplement 2

[Online resource]. Item diagnostic results (PDF 136 kb)

Appendix

Appendix

The 48-item version of the Patient Experience with Treatment and Self-management (PETS): a measure of perceived treatment burden

Domain/item

Medical information: How easy/difficult has it been to …

(Responses: very easy, easy, neither easy nor difficulty, difficult, very difficult, not applicable)

 learn about your health problem(s)?

 learn what foods you should eat to stay healthy?

 find information on the medications that you have to take?

 understand changes to your treatment plan?

 understand the reasons why you are taking some medicines?

 find sources of medical information that you trust?

 understand advice from different healthcare providers?

Medications: How much of a problem has it been for you to…

(Responses: not at all, a little, somewhat, quite a bit, very much)

 organize your medicines?

 take more than one medicine every day?

 take your medicines several times each day?

 refill your medicines?

 adjust your medicines (including the amount, type, or time when you take it)?

 take your medicines as directed?

 plan your daily activities around your medicine schedule?

Single-item indicators of medication bother: How bothered have you been by…

(Responses: not at all, a little, somewhat, quite a bit, very much)

 how much you have to rely on your medicine(s)?

 side effects of your medicine(s)?

Medical appointments: How much of a problem has it been for you to…

(Responses: not at all, a little, somewhat, quite a bit, very much)

 make or keep your medical appointments?

 schedule and keep track of your medical appointments?

 make or keep appointments with different healthcare providers?

Monitoring health: How much of a problem has it been for you to…

(Responses: not at all, a little, somewhat, quite a bit, very much)

 monitor your health behaviors, e.g., tracking exercise, foods you eat, or medicines you take?

 monitor your health condition, e.g., weighing yourself, checking blood pressure, or checking blood sugar?

Interpersonal challenges: How bothered have you been by…

(Responses: not at all, a little, somewhat, quite a bit, very much)

 feeling dependent on others for your healthcare needs?

 others reminding you to do things for your health like take your medicine, watch what you eat, or schedule medical appointments?

 your healthcare needs creating tension in your relationships with others

 others not understanding your health situation

Medical & healthcare expenses: How easy/difficult has it been for you to …

(Responses: very easy, easy, neither easy nor difficulty, difficult, very difficult, not applicable)

 plan for the future because of your medical expenses?

 pay for healthy foods?

 pay for all of your medical expenses?

 pay for your medicines?

 understand what is and what is not covered by your health insurance?

Difficulty with healthcare services: How much do you agree/disagree with the following?

(Responses: strongly agree, agree, disagree, strongly disagree, not applicable)

 Have problems with different healthcare providers not communicating with each other about my medical care

 Have to see too many different specialists for my health problem(s) or illness(es)

 Have problems filling out forms related to my healthcare

 Have problems getting appointments at times that are convenient for me

 Have problems getting appointments with a specialist

 Have to wait too long at my medical appointments

 Have to wait too long at the pharmacy for my medicine

Role and social activity limitations: How much has your self-care interfered with your …

(Responses: not at all, a little, somewhat, quite a bit, very much)

 work (include work at home)?

 family responsibilities?

 daily activities?

 hobbies and leisure activities?

 ability to spend time with family and friends?

 ability to travel for work or vacation?

Physical and mental exhaustion: How often did your self-care make you feel …

(Responses: never, rarely, sometimes, often, always)

 angry?

 preoccupied?

 depressed?

 worn out?

 frustrated?

  1. With the exception of items in the “difficulty with healthcare services” domain, all items reference a recall time period of the past 4 weeks. No recall time period is used for the difficulty with healthcare services items

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Eton, D.T., Yost, K.J., Lai, Js. et al. Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res 26, 489–503 (2017). https://doi.org/10.1007/s11136-016-1397-0

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