Introduction: Hernias are one of the most common surgical diagnoses, and general surgical operations are performed. The involvement of patients in the decision making can be limited. The aim of this study was to explore the perspectives of patients around their hernia and its management, to aid future planning of hernia services to maximise patient experience, and good outcomes for the patient. Methods: A SurveyMonkey questionnaire was developed by patient advocates with some advice from surgeons. It was promoted on Twitter and Facebook, such as all found "hernia help" groups on these platforms over a 6-week period during the summer of 2020. Demographics, the reasons for seeking a hernia repair, decision making around the choice of surgeon, hospital, mesh type, pre-habilitation, complications, and participation in a hernia registry were collected. Results: In total, 397 questionnaires were completed in the study period. The majority of cases were from English speaking countries. There was a strong request for hernia specialists to perform the surgery, to have detailed knowledge about all aspects of hernia disease and its management, such as no operation and non-mesh options. Chronic pain was the most feared complication. The desire for knowledge about the effect of the hernia and surgery on the sexual function in all age groups was a notable finding. Pre-habilitation and a hernia registry participation were well-supported. Conclusions: Hernia repair is a quality of life surgery. Whether awaiting surgery or having had surgery with a good or bad outcome, patients want information about their condition and treatment, such as the effect on aspects of life, such as sex, and they wish greater involvement in their management decisions. Patients want their surgery by surgeons who can also manage complications of such surgery or recommend further treatment. A large group of "hernia surgery injured" patients feel abandoned by their general surgeon when complications ensue.

3rd Department of Surgery Motol University Hospital Prague Czechia

Department of General Surgery Royal Infirmary of Edinburgh Edinburgh United Kingdom

DISC University of Genoa Genoa Italy

Hernia Istanbul® Hernia Surgery Center Istanbul Turkey

Patient Representative Glasgow United Kingdom

Patient Representative Liverpool United Kingdom

Patient Representative London United Kingdom

Zobrazit více v PubMed

Muysoms FE, Vanlander A, Ceulemans R, Kyle-Leinhase I, Michiels M, Jacobs I, et al. . A prospective, multicenter, observational study on quality of life after laparoscopic inguinal hernia repair with ProGrip laparoscopic, self-fixating mesh according to the European Registry for Abdominal Wall Hernias Quality of Life Instrument. Surgery. (2016) 160:1344–57. 10.1016/j.surg.2016.04.026 PubMed DOI

Simons M, Rapport F, Zurynski Y, Cullis J, Davidson A. What are the links between evidence-based medicine and shared decision-making in training programs for junior doctors? A scoping review protocol. BMJ Open. (2020) 10:e037225. 10.1136/bmjopen-2020-037225 PubMed DOI PMC

The GRADE Handbook . Available online at: https://gdt.gradepro.org/app/handbook/handbook.html (accessed July 31, 2020).

Lee THJ, Ulisney KL, Choudhuri AK, Swiger JL, Gibeily GJ. Understanding the patient perspective after ventral hernia repair. Hernia. (2019) 23:995–1001. 10.1007/s10029-019-02015-6 PubMed DOI

Alawadi ZA, Leal IM, Flores JR, Holihan JL, Henchcliffe BE, Mitchell TO, et al. . Underserved patients seeking care for ventral hernias at a safety net hospital: impact on quality of life and expectations of treatment. J Am Col Surg. (2017) 224:26–34.e2. 10.1016/j.jamcollsurg.2016.09.017 PubMed DOI

Ng D, McMurray J, Wallace J, Morita P. What is being used and who is using it: barriers to the adoption of smartphone patient experience surveys. JMIR Form Res. (2019) 3:e9922. 10.2196/formative.9922 PubMed DOI PMC

Pereira JA, Bravo-Salva A, Montcusí B, Pérez-Farre S, Fresno de Prado L, López-Cano M. Incisional hernia recurrence after open elective repair: expertise in abdominal wall surgery matters. BMC Surg. (2019) 19:103. 10.1186/s12893-019-0569-6 PubMed DOI PMC

Köckerling F, Sheen AJ, Berrevoet F, Campanelli G, Cuccurullo D, Fortelny R, et al. . The reality of general surgery training and increased complexity of abdominal wall hernia surgery. Hernia. (2019) 23:1081–91. 10.1007/s10029-019-02062-z PubMed DOI PMC

Russell S. Physical activity and exercise after stoma surgery: overcoming the barriers. Br J Nurs. (2017) 26:S20–6. 10.12968/bjon.2017.26.5.S20 PubMed DOI

Montgomery v Lanarkshire Health Board [2015] UKSC 11 (11 March 2015) . [2015] 2 All ER 1031, 2015 SC (UKSC) 63. Available online at: https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf

Khan SU, Bowrey DJ, Williams RN, Soh JY, Peleki A, Muhibullah N, et al. . Patient's views of the consent process for groin hernia repair: use of consent template improves compliance with best practice. Ann Med Surg. (2018) 35:67–72. 10.1016/j.amsu.2018.09.033 PubMed DOI PMC

Asarbakhsh M, Smith O, Chitsabesan P, MacLeod T, Lim P, Chintapatla S. A multistage process leading to the development of a structured consent form and patient information leaflet for complex abdominal wall reconstruction (CAWR). Hernia. (2020) 25:277–85. 10.1007/s10029-020-02260-0 PubMed DOI

Say R, Murtagh M, Thomson R. Patients' preference for involvement in medical decision making: a narrative review. Patient Educ Couns. (2006) 60:102–14. 10.1016/j.pec.2005.02.003 PubMed DOI

Sherlock A, Brownie S. Patients' recollection and understanding of informed consent: a literature Review. ANZ J Surg. (2014) 84:207–10. 10.1111/ans.12555 PubMed DOI

Uzzaman MM, Sinha S, Shaygi B, Vitish-Sharma P, Loizides S, Myint F. Evaluation of patient's understanding and recall of the consent process after open inguinal hernia repairs. Int J Surg. (2012) 10:5–10. 10.1016/j.ijsu.2011.10.003 PubMed DOI

HerniaSurge Group. International guidelines for groin hernia management. Hernia. (2018) 22:1–165. 10.1007/s10029-017-1668-x PubMed DOI PMC

Henchcliffe BE, Holihan JL, Flores-Gonzalez JR, Mitchell TO, Ko TC, Kao LS, et al. . Barriers to participation in preoperative risk-reduction programs prior to ventral hernia repair: an assessment of underserved patients at a safety-net hospital. JAMA Surg. (2016) 151:488–90. 10.1001/jamasurg.2015.4452 PubMed DOI

Woodfield J, Deo P, Davidson A, Chen TY, van Rij A. Patient reporting of complications after surgery: what impact does documenting postoperative problems from the perspective of the patient using telephone interview and postal questionnaires have on the identification of complications after surgery? BMJ Open. (2019) 9:e028561. 10.1136/bmjopen-2018-028561 PubMed DOI PMC

Adamu-Biu F, Akoh JA. Survey of patients regarding experience following repair of inguinal Hernias. Hernia. (2020) 24:187–95. 10.1007/s10029-019-02061-0 PubMed DOI

Hubbard G, Taylor C, Beeken B, Campbell A, Gracey J, Grimmett C, et al. . Research priorities about stoma-related quality of life from the perspective of people with a stoma: a pilot survey. Health Expect. (2017) 20:1421–7. 10.1111/hex.12585 PubMed DOI PMC

ENGINE-An EHS Project for Future Guidelines

Exploring the link between poor oral hygiene and mesh infection after hernia repair: a systematic review and proposed best practices

Midline incisional hernia guidelines: the European Hernia Society