Olivia Monton, Allister Smith, Sarah Sabboobeh, Marie Demian, Julie Cornish, Steven D Wexner, Peter Christensen, Amandeep Ghuman, Liliana G Bordeianou, Celia Keane, Syed Husain, Alessandra Gasior, Natalie Leon, Julie Savard, Lieba R Savitt, Margit Majgaard, Gitte Kjær Sørensen, Melanie Mills, Fateme Rajabiyazdi, Marylise Boutros
{"title":"使用患者产生的健康数据管理低前切除术综合征：一项定性研究。","authors":"Olivia Monton, Allister Smith, Sarah Sabboobeh, Marie Demian, Julie Cornish, Steven D Wexner, Peter Christensen, Amandeep Ghuman, Liliana G Bordeianou, Celia Keane, Syed Husain, Alessandra Gasior, Natalie Leon, Julie Savard, Lieba R Savitt, Margit Majgaard, Gitte Kjær Sørensen, Melanie Mills, Fateme Rajabiyazdi, Marylise Boutros","doi":"10.3389/fsurg.2024.1506688","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":12564,"journal":{"name":"Frontiers in Surgery","volume":"11 ","pages":"1506688"},"PeriodicalIF":1.6000,"publicationDate":"2024-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11693684/pdf/","citationCount":"0","resultStr":"{\"title\":\"The use of patient-generated health data in the management of low anterior resection syndrome: a qualitative study.\",\"authors\":\"Olivia Monton, Allister Smith, Sarah Sabboobeh, Marie Demian, Julie Cornish, Steven D Wexner, Peter Christensen, Amandeep Ghuman, Liliana G Bordeianou, Celia Keane, Syed Husain, Alessandra Gasior, Natalie Leon, Julie Savard, Lieba R Savitt, Margit Majgaard, Gitte Kjær Sørensen, Melanie Mills, Fateme Rajabiyazdi, Marylise Boutros\",\"doi\":\"10.3389/fsurg.2024.1506688\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":12564,\"journal\":{\"name\":\"Frontiers in Surgery\",\"volume\":\"11 \",\"pages\":\"1506688\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2024-12-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11693684/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Frontiers in Surgery\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.3389/fsurg.2024.1506688\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q2\",\"JCRName\":\"SURGERY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Frontiers in Surgery","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.3389/fsurg.2024.1506688","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"SURGERY","Score":null,"Total":0}
The use of patient-generated health data in the management of low anterior resection syndrome: a qualitative study.
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.
期刊介绍：
Evidence of surgical interventions go back to prehistoric times. Since then, the field of surgery has developed into a complex array of specialties and procedures, particularly with the advent of microsurgery, lasers and minimally invasive techniques. The advanced skills now required from surgeons has led to ever increasing specialization, though these still share important fundamental principles.
Frontiers in Surgery is the umbrella journal representing the publication interests of all surgical specialties. It is divided into several “Specialty Sections” listed below. All these sections have their own Specialty Chief Editor, Editorial Board and homepage, but all articles carry the citation Frontiers in Surgery.
Frontiers in Surgery calls upon medical professionals and scientists from all surgical specialties to publish their experimental and clinical studies in this journal. By assembling all surgical specialties, which nonetheless retain their independence, under the common umbrella of Frontiers in Surgery, a powerful publication venue is created. Since there is often overlap and common ground between the different surgical specialties, assembly of all surgical disciplines into a single journal will foster a collaborative dialogue amongst the surgical community. This means that publications, which are also of interest to other surgical specialties, will reach a wider audience and have greater impact.
The aim of this multidisciplinary journal is to create a discussion and knowledge platform of advances and research findings in surgical practice today to continuously improve clinical management of patients and foster innovation in this field.
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