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ORIGINAL RESEARCH article

Front. Surg.
Sec. Colorectal and Proctological Surgery
Volume 11 - 2024 | doi: 10.3389/fsurg.2024.1506688
This article is part of the Research Topic Low Anterior Resection Syndrome - Treatment Possibilities View all 4 articles

The Use of Patient-Generated Health Data in the Management of Low Anterior Resection Syndrome: A Qualitative Study

Provisionally accepted
Olivia Monton Olivia Monton 1,2Allister Smith Allister Smith 3*Sarah Sabboobeh Sarah Sabboobeh 4*Marie Demian Marie Demian 4*Julie Cornish Julie Cornish 5*Steven D. Wexner Steven D. Wexner 6*Peter Christensen Peter Christensen 7,8Amandeep Ghuman Amandeep Ghuman 9*Liliana G. Bordeianou Liliana G. Bordeianou 10,11*Celia Keane Celia Keane 12,13*Syed Husain Syed Husain 14*Alessandra Gasior Alessandra Gasior 15Natalie Leon Natalie Leon 4*Julie Savard Julie Savard 4*Lieba R. Savitt Lieba R. Savitt 10*Margit Majgaard Margit Majgaard 16*Gitte Kjær Sørensen Gitte Kjær Sørensen 16*Melanie Mills Melanie Mills 5Fateme Rajabiyazdi Fateme Rajabiyazdi 17Marylise Boutros Marylise Boutros 18,6*
  • 1 Department of Surgery, McMaster University, Hamilton, Canada
  • 2 Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States
  • 3 Department of Emergency Medicine, Western University, London, Canada
  • 4 Department of Surgery, Division of Colon and Rectal Surgery, Jewish General Hospital, Montreal, Canada
  • 5 Cardiff and Vale University Health Board, Cardiff, United Kingdom
  • 6 Department of Colorectal Surgery, Cleveland Clinic Florida, Weston, United States
  • 7 Aarhus University, Aarhus, Central Denmark Region, Denmark
  • 8 Danish Cancer Society National Research Centre for Survivorship and Late Adverse Effects Following Pelvic Organ Cancer, Aarhus, Denmark
  • 9 Department of Surgery, Division of Colon and Rectal Surgery, St. Paul’s Hospital, Vancouver, Canada
  • 10 Department of Colorectal Surgery, Massachusetts General Hospital, Boston, United States
  • 11 Center for Pelvic Floor Disorders, Massachusetts General Hospital, Boston, United States
  • 12 Department of Surgery, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
  • 13 Department of Surgery, Whangarei Hospital, Te Whatu Ora - Health New Zealand - Te Tai Tokerau, Whangārei, New Zealand
  • 14 The Ohio State University, Columbus, Ohio, United States
  • 15 The Ohio State Wexner Medical Center, Columbus, United States
  • 16 Aarhus University Hospital, Aarhus, Denmark
  • 17 Department of Systems and Computer Engineering, Carleton University, Ottawa, Canada
  • 18 Department of Surgery, McGill University, Montreal, Canada

The final, formatted version of the article will be published soon.

    Background: The cornerstone of low anterior resection syndrome (LARS) treatment is self-management, which requires patient engagement. Colorectal surgeons and nurses may use patient-generated health data (PGHD) to help guide patients in their use of self-management strategies for LARS. However, the perspectives of LARS experts on the use of PGHD remain largely unexplored. The objective of this study was to explore the perspectives and experiences of LARS experts regarding the use of PGHD in the management of LARS. Methods: We utilized purposive snowball sampling to identify international LARS experts, including surgeons, nurses, and LARS researchers with knowledge and expertise in LARS. We conducted individual semi-structured interviews with these experts between August 2022 and February 2024. We performed thematic analysis using the framework method to identify domains and associated themes. Results: Our sample included 16 LARS experts from five countries. Thematic analysis identified four domains and associated themes. The domains included: data collection practices, data review practices, perceived usefulness, and future directions. Within the data collection practices domain, we found that most experts asked LARS patients to collect some form of PGHD, including bowel diaries, patient-reported outcome measures, or both. Within the data review practices domain, we found that both surgeons and nurses reviewed PGHD. Most participants described finding it difficult to interpret the data and identified time constraints, legibility, and completeness as the most common barriers to reviewing data in clinic. In terms of perceived usefulness, data collection was felt to help clinicians understand symptoms and their impact and assist patients with self-management. The future directions domain revealed that most experts felt that a clinical tool in the form of an online app or website to support data collection and enhance data visualization would be useful. Finally, some participants saw promise in leveraging PGHD to inform the creation of automated treatment algorithms for LARS management. Conclusions: This study highlights many gaps in the processes of patient-generated LARS data collection and review. A clinical tool including various data collection templates and data visualization prototypes could help to address these gaps. Future research will focus on incorporating the patient perspective.

    Keywords: Low anterior resection, low anterior resection syndrome (LARS), patient generated health data (PGHD), Colorectal Surgery, self-management

    Received: 05 Oct 2024; Accepted: 27 Nov 2024.

    Copyright: © 2024 Monton, Smith, Sabboobeh, Demian, Cornish, Wexner, Christensen, Ghuman, Bordeianou, Keane, Husain, Gasior, Leon, Savard, Savitt, Majgaard, Sørensen, Mills, Rajabiyazdi and Boutros. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence:
    Allister Smith, Department of Emergency Medicine, Western University, London, Canada
    Sarah Sabboobeh, Department of Surgery, Division of Colon and Rectal Surgery, Jewish General Hospital, Montreal, Canada
    Marie Demian, Department of Surgery, Division of Colon and Rectal Surgery, Jewish General Hospital, Montreal, Canada
    Julie Cornish, Cardiff and Vale University Health Board, Cardiff, United Kingdom
    Steven D. Wexner, Department of Colorectal Surgery, Cleveland Clinic Florida, Weston, United States
    Amandeep Ghuman, Department of Surgery, Division of Colon and Rectal Surgery, St. Paul’s Hospital, Vancouver, Canada
    Liliana G. Bordeianou, Department of Colorectal Surgery, Massachusetts General Hospital, Boston, United States
    Celia Keane, Department of Surgery, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
    Syed Husain, The Ohio State University, Columbus, 43210, Ohio, United States
    Natalie Leon, Department of Surgery, Division of Colon and Rectal Surgery, Jewish General Hospital, Montreal, Canada
    Julie Savard, Department of Surgery, Division of Colon and Rectal Surgery, Jewish General Hospital, Montreal, Canada
    Lieba R. Savitt, Department of Colorectal Surgery, Massachusetts General Hospital, Boston, United States
    Margit Majgaard, Aarhus University Hospital, Aarhus, 8000, Denmark
    Gitte Kjær Sørensen, Aarhus University Hospital, Aarhus, 8000, Denmark
    Marylise Boutros, Department of Colorectal Surgery, Cleveland Clinic Florida, Weston, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.