Abstract
Purpose
More than 350,000 ventral hernia repairs are performed in the U.S. each year. However, long-term quality of life of patients living with hernia repair is less known. Follow-up using patient-reported outcomes (measures) is an important representation of the patient experience and can inform quality improvements of hernia treatments. This study aims to understand the patients’ experience after ventral hernia repair, to enhance quality of care and long-term hernia treatment outcomes.
Methods
To better understand long-term outcomes of ventral hernia repair and to enhance an existing PRO tool, two rounds of semi-structured interviews and focus groups were conducted. In total, 22 patients who had ventral hernia repair were enrolled. The patient perspectives obtained were grouped into themes to inform the further development of the PRO tool. Data were transcribed and analyzed using atlas.ti and Microsoft Word.
Results
Ten major themes were identified in this analysis. Patients’ quality of life was impacted by hernia repairs and hernia recurrences, including chronic pain, effects on daily activities and social relationships, and the challenge in finding new treatments. The lack of provider–patient communication and patient understanding of hernia repairs highlighted the need for providing patients with more comprehensive information regarding repair options and outcomes prior to surgery.
Conclusion
PRO assessments and meaningful communications between the physician and the patient can provide a comprehensive benefit–risk assessment prior to surgery, and may also improve patient understanding of what to expect during recovery from surgery.
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Acknowledgements
The authors would like to acknowledge Dr. Benjamin Poulose and Dr. Michael Rosen of the Americas Hernia Society Quality Collaborative for their significant contributions to this work.
Funding
No funds or support has been received for this work.
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Experiments comply with the current laws of the country in which they were performed.
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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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Appendices
Appendix 1: HerQLes—Hernia-related quality-of-life assessment tool
Appendix 2: Interview and Focus Group Semi-Structured Script
General questions
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1.
Can you tell me a little bit about how you got your hernia?
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2.
What was living with hernia like before surgery?
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3.
What type of treatment did you get? (How did you feel about the procedure?)
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4.
How did you physically feel after the procedure until now?
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5.
How long after the procedure did you notice symptoms? How did they affect you (how intense and frequent were they)?
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6.
What kind of (other) symptoms did you experience?
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7.
What made/makes the symptoms better?
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8.
Did you experience any changes in your symptoms as time went on? (The trend of symptoms)
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9.
Was that what you expected for recovery? Were any new or unexpected?
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10.
What was making the decision for taking the treatment like?
Did you have any concerns? (worried about anything/potential side effects)
PRO survey questions
Instructions: Now we are going to look at this survey. This survey will be used to collect data from people who had a hernia surgery, and to track their outcomes over time. So having had a surgery yourself, can we have your thoughts on what would make sense in a survey? So, what would make a ‘perfect’ survey?
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11.
What are some of the thoughts that came to mind when you were doing this survey?
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12.
Are there other items or questions that should have been in the survey?
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13.
Which questions are the least important and could probably be taken off the list?
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14.
Which questions are the most important to you?
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15.
Any phrasing or wording of the questions that should be written in a different way?
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16.
How was the length of the survey?
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17.
What instruction did you receive when doing the survey? (how to do it, and how frequent you will have to do it?)
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Lee, TH.J., Ulisney, K.L., Choudhuri, A.K. et al. Understanding the patient perspective after ventral hernia repair. Hernia 23, 995–1001 (2019). https://doi.org/10.1007/s10029-019-02015-6
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DOI: https://doi.org/10.1007/s10029-019-02015-6