Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them
Background Refractory ulcerative proctitis presents a huge clinical challenge not only for the patients living with this chronic, progressive condition but also for the professionals who care for them. Currently, there is limited research and evidence-based guidance, resulting in many patients livin...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2023-05-01
|
| Series: | BMJ Open Gastroenterology |
| Online Access: | https://bmjopengastro.bmj.com/content/10/1/e001139.full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1823858079592087552 |
|---|---|
| author | Philip Smith Stuart Bloom Christian Selinger Ailsa Hart Christopher Lamb Anjan Dhar Helen Steed Matthew Brookes Jonathan Macdonald Ian Arnott Shellie Radford Gordon W Moran Susan Ritchie Victoria Fletcher Jonathan Segal N Sharma Shahida Din Daniel Gaya J Butterworth S Andrews P Adams Deborah Morris Pearl Avery Philip Oppong Mario Guslandi Maro Kyriacou Rachel Linger Madhoor Ramdeen John Appleton John Anneh B Kussel |
| author_facet | Philip Smith Stuart Bloom Christian Selinger Ailsa Hart Christopher Lamb Anjan Dhar Helen Steed Matthew Brookes Jonathan Macdonald Ian Arnott Shellie Radford Gordon W Moran Susan Ritchie Victoria Fletcher Jonathan Segal N Sharma Shahida Din Daniel Gaya J Butterworth S Andrews P Adams Deborah Morris Pearl Avery Philip Oppong Mario Guslandi Maro Kyriacou Rachel Linger Madhoor Ramdeen John Appleton John Anneh B Kussel |
| collection | DOAJ |
| description | Background Refractory ulcerative proctitis presents a huge clinical challenge not only for the patients living with this chronic, progressive condition but also for the professionals who care for them. Currently, there is limited research and evidence-based guidance, resulting in many patients living with the symptomatic burden of disease and reduced quality of life. The aim of this study was to establish a consensus on the thoughts and opinions related to refractory proctitis disease burden and best practice for management.Methods A three-round Delphi consensus survey was conducted among patients living with refractory proctitis and the healthcare experts with knowledge on this disease from the UK. A brainstorming stage involving a focus group where the participants came up with an initial list of statements was completed. Following this, there were three rounds of Delphi surveys in which the participants were asked to rank the importance of the statements and provide any additional comments or clarifications. Calculation of mean scores, analysis of comments and revisions were performed to produce a final list of statements.Results In total, 14 statements were suggested by the focus group at the initial brainstorming stage. Following completion of three Delphi survey rounds, all 14 statements reached consensus following appropriate revision.Conclusions We established consensus on the thoughts and opinions related to refractory proctitis from both the experts who manage this disease and the patients living with it. This represents the first step towards developing clinical research data and ultimately the evidence needed for best practice management guidance of this condition. |
| format | Article |
| id | doaj-art-c891318c360b4ee4990b9c3c260e62f8 |
| institution | Kabale University |
| issn | 2054-4774 |
| language | English |
| publishDate | 2023-05-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open Gastroenterology |
| spelling | doaj-art-c891318c360b4ee4990b9c3c260e62f82025-02-11T14:40:10ZengBMJ Publishing GroupBMJ Open Gastroenterology2054-47742023-05-0110110.1136/bmjgast-2023-001139Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them 0Philip Smith1Stuart BloomChristian Selinger2Ailsa Hart3Christopher Lamb4Anjan Dhar5Helen Steed6Matthew BrookesJonathan MacdonaldIan ArnottShellie Radford7Gordon W Moran8Susan RitchieVictoria FletcherJonathan Segal9N SharmaShahida Din10Daniel GayaJ ButterworthS AndrewsP AdamsDeborah MorrisPearl AveryPhilip OppongMario GuslandiMaro Kyriacou11Rachel LingerMadhoor RamdeenJohn AppletonJohn AnnehB KusselKenya National Bureau of Statistics, Nairobi, Nairobi, KenyaHealth Professions, Manchester Metropolitan University, Manchester, UK2 Leeds Institute of Medical Research at St James`s Hopsital, University of Leeds, Leeds, UKSt Mark`s Hospital and Academic Institute, London, UK6Newcastle University, Newcastle Upon Tyne, UK2 Teesside University, Middlesbrough, UKGastroenterology, University of Wolverhampton, Wolverhampton, UKNottingham Digestive Diseases Centre, Translational Medical Sciences, University of Nottingham University Park Campus, Nottingham, UK17 Gastroenterology, NIHR Nottingham Biomedical Research Centre at Nottingham University Hospitals, Nottingham, UK2 Gastroenterology, The Royal Melbourne Hospital, Melbourne, Victoria, AustraliaGastroenterology, NHS Lothian, Edinburgh, UKGastroenterology, Nottingham University Hospitals NHS Trust, Nottingham, UKBackground Refractory ulcerative proctitis presents a huge clinical challenge not only for the patients living with this chronic, progressive condition but also for the professionals who care for them. Currently, there is limited research and evidence-based guidance, resulting in many patients living with the symptomatic burden of disease and reduced quality of life. The aim of this study was to establish a consensus on the thoughts and opinions related to refractory proctitis disease burden and best practice for management.Methods A three-round Delphi consensus survey was conducted among patients living with refractory proctitis and the healthcare experts with knowledge on this disease from the UK. A brainstorming stage involving a focus group where the participants came up with an initial list of statements was completed. Following this, there were three rounds of Delphi surveys in which the participants were asked to rank the importance of the statements and provide any additional comments or clarifications. Calculation of mean scores, analysis of comments and revisions were performed to produce a final list of statements.Results In total, 14 statements were suggested by the focus group at the initial brainstorming stage. Following completion of three Delphi survey rounds, all 14 statements reached consensus following appropriate revision.Conclusions We established consensus on the thoughts and opinions related to refractory proctitis from both the experts who manage this disease and the patients living with it. This represents the first step towards developing clinical research data and ultimately the evidence needed for best practice management guidance of this condition.https://bmjopengastro.bmj.com/content/10/1/e001139.full |
| spellingShingle | Philip Smith Stuart Bloom Christian Selinger Ailsa Hart Christopher Lamb Anjan Dhar Helen Steed Matthew Brookes Jonathan Macdonald Ian Arnott Shellie Radford Gordon W Moran Susan Ritchie Victoria Fletcher Jonathan Segal N Sharma Shahida Din Daniel Gaya J Butterworth S Andrews P Adams Deborah Morris Pearl Avery Philip Oppong Mario Guslandi Maro Kyriacou Rachel Linger Madhoor Ramdeen John Appleton John Anneh B Kussel Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them BMJ Open Gastroenterology |
| title | Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| title_full | Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| title_fullStr | Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| title_full_unstemmed | Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| title_short | Delphi consensus survey: the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| title_sort | delphi consensus survey the opinions of patients living with refractory ulcerative proctitis and the health care professionals who care for them |
| url | https://bmjopengastro.bmj.com/content/10/1/e001139.full |
| work_keys_str_mv | AT delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT philipsmith delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT stuartbloom delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT christianselinger delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT ailsahart delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT christopherlamb delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT anjandhar delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT helensteed delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT matthewbrookes delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT jonathanmacdonald delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT ianarnott delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT shellieradford delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT gordonwmoran delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT susanritchie delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT victoriafletcher delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT jonathansegal delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT nsharma delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT shahidadin delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT danielgaya delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT jbutterworth delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT sandrews delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT padams delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT deborahmorris delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT pearlavery delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT philipoppong delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT marioguslandi delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT marokyriacou delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT rachellinger delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT madhoorramdeen delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT johnappleton delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT johnanneh delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem AT bkussel delphiconsensussurveytheopinionsofpatientslivingwithrefractoryulcerativeproctitisandthehealthcareprofessionalswhocareforthem |