Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Dec 19:11:1506688.
doi: 10.3389/fsurg.2024.1506688. eCollection 2024.

The use of patient-generated health data in the management of low anterior resection syndrome: a qualitative study

Olivia Monton  1   2 , Allister Smith  3 , Sarah Sabboobeh  4 , Marie Demian  4 , Julie Cornish  5 , Steven D Wexner  6 , Peter Christensen  7   8 , Amandeep Ghuman  9 , Liliana G Bordeianou  10   11   12 , Celia Keane  13   14 , Syed Husain  15 , Alessandra Gasior  16   17 , Natalie Leon  4 , Julie Savard  4 , Lieba R Savitt  10 , Margit Majgaard  7 , Gitte Kjær Sørensen  7 , Melanie Mills  5 , Fateme Rajabiyazdi  18 , Marylise Boutros  6   19
Affiliations

The use of patient-generated health data in the management of low anterior resection syndrome: a qualitative study

Olivia Monton et al. Front Surg. .

Abstract

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: colorectal surgery; low anterior resection; low anterior resection syndrome (LARS); patient-generated health data (PGHD); self-management.

PubMed Disclaimer

Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
Summary of findings organized by domain.
See this image and copyright information in PMC

References

    1. Bryant CLC, Lunniss PJ, Knowles CH, Thaha MA, Chan CLH. Anterior resection syndrome. Lancet Oncol. (2012) 13(9):e403–408. 10.1016/S1470-2045(12)70236-X - DOI - PubMed
    1. Emmertsen KJ, Laurberg S, Madsen M R, Nielsen H J, Ovesen A U, Salomon S, et al. Impact of bowel dysfunction on quality of life after sphincter-preserving resection for rectal cancer. Br J Surg. (2013) 100(10):1377–87. 10.1002/bjs.9223 - DOI - PubMed
    1. Chen TY-T, Wiltink LM, Nout RA, Meershoek-Klein Kranenbarg E, Laurberg S, Marijnen CAM, et al. Bowel function 14 years after preoperative short-course radiotherapy and total mesorectal excision for rectal cancer: report of a multicenter randomized trial. Clin Colorectal Cancer. (2015) 14(2):106–14. 10.1016/j.clcc.2014.12.007 - DOI - PubMed
    1. Juul T, Ahlberg M, Biondo S, Espin E, Jimenez LM, Matzel KE, et al. Low anterior resection syndrome and quality of life: an international multicenter study. Dis Colon Rectum. (2014) 57(5):585–91. 10.1097/DCR.0000000000000116 - DOI - PubMed
    1. Battersby NJ, Juul T, Christensen P, Janjua AZ, Branagan G, Emmertsen KJ, et al. Predicting the risk of bowel-related quality-of-life impairment after restorative resection for rectal cancer: a multicenter cross-sectional study. Dis Colon Rectum. (2016) 59(4):270–80. 10.1097/DCR.0000000000000552 - DOI - PubMed

LinkOut - more resources