Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey
Objectives To determine the proportion of patients with extremity sarcoma who would be willing to participate in a clinical trial in which they would be randomised to one of four different postoperative sarcoma surveillance regimens. Additionally, we assessed patients’ perspectives on the burden of...
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| Language: | English |
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BMJ Publishing Group
2021-02-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/11/2/e042742.full |
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| author | Kevin Jones David Wilson Michelle Ghert James Hayden Benjamin Miller Patricia Schneider Robert Turcotte Roberto Velez Victoria Giglio Dana Ghanem Marc Isler Sophie Mottard Yee-Cheen Doung Kenneth Gundle R Lor Randall |
| author_facet | Kevin Jones David Wilson Michelle Ghert James Hayden Benjamin Miller Patricia Schneider Robert Turcotte Roberto Velez Victoria Giglio Dana Ghanem Marc Isler Sophie Mottard Yee-Cheen Doung Kenneth Gundle R Lor Randall |
| author_sort | Kevin Jones |
| collection | DOAJ |
| description | Objectives To determine the proportion of patients with extremity sarcoma who would be willing to participate in a clinical trial in which they would be randomised to one of four different postoperative sarcoma surveillance regimens. Additionally, we assessed patients’ perspectives on the burden of cancer care, factors that influence comfort with randomisation and the importance of cancer research.Design Prospective, cross-sectional patient survey.Setting Outpatient sarcoma clinics in Canada, the USA and Spain between May 2017 and April 2020. Survey data were entered into a study-specific database.Participants Patients with extremity sarcoma who had completed definitive treatment from seven clinics across Canada, the USA and Spain.Main outcome measures The proportion of patients with extremity sarcoma who would be willing to participate in a randomised controlled trial (RCT) that evaluates varying postoperative cancer surveillance regimens.Results One hundred thirty complete surveys were obtained. Respondents reported a wide range of burdens related to clinical care and surveillance. The majority of patients (85.5%) responded that they would agree to participate in a cancer surveillance RCT if eligible. The most common reason to participate was that they wanted to help future patients. Those that would decline to participate most commonly reported that participating in research would be too much of a burden for them at a time when they are already feeling overwhelmed. However, most patients agreed that cancer research will help doctors better understand and treat cancer.Conclusions These results demonstrate that most participants would be willing to participate in an RCT that evaluates varying postoperative cancer surveillance regimens. Participants’ motivation for trial participation included altruistic reasons to help future patients and deterrents to trial participation included the overwhelming burden of a cancer diagnosis. These results will help inform the development of patient-centred RCT protocols in sarcoma surveillance research.Level of evidence V. |
| format | Article |
| id | doaj-art-f5ef09a0be04463daa44216c3592e97a |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2021-02-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-f5ef09a0be04463daa44216c3592e97a2024-11-19T15:20:12ZengBMJ Publishing GroupBMJ Open2044-60552021-02-0111210.1136/bmjopen-2020-042742Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient surveyKevin Jones0David Wilson1Michelle Ghert2James Hayden3Benjamin Miller4Patricia Schneider5Robert Turcotte6Roberto Velez7Victoria Giglio8Dana Ghanem9Marc Isler10Sophie Mottard11Yee-Cheen Doung12Kenneth Gundle13R Lor Randall14Department of Orthopaedics, Huntsman Cancer Institute, University of Utah School of Medicine, Salt Lake City, Utah, USA1University of Birmingham, Medical School, Mindelsohn Way, Edgbaston, Birmingham, WMD B15 2TT, UK14 Division of Orthopaedics, McMaster University, Hamilton, Ontario, Canada1 Department of Paediatric Haematology and Oncology, Alder Hey Children’s NHS Foundation Trust, Liverpool, UKDepartment of Orthopaedics and Rehabilitation, University of Iowa, Iowa City, Iowa, USADepartment of Surgery, McMaster University, Hamilton, Ontario, Canada24 McGill University Health Centre, Montréal, Québec, CanadaOrthopaedic Surgery Department, Hospital Universitario Vall d’Hebron, Barcelona, SpainDepartment of Surgery, McMaster University, Hamilton, Ontario, CanadaDepartment of Surgery, McMaster University, Hamilton, Ontario, CanadaDepartment of Orthopaedic Oncology, University of Montreal, Hopital Maisonneuve-Rosemont, Montreal, Québec, CanadaDepartment of Orthopaedic Oncology, University of Montreal, Hopital Maisonneuve-Rosemont, Montreal, Québec, CanadaDepartment of Orthopaedics & Rehabilitation, Oregon Health & Science University, Portland, Oregon, USA1Oregon Health and Science University, Portland, OR, USADepartment of Orthopaedics, University of California Davis, Sacramento, California, USAObjectives To determine the proportion of patients with extremity sarcoma who would be willing to participate in a clinical trial in which they would be randomised to one of four different postoperative sarcoma surveillance regimens. Additionally, we assessed patients’ perspectives on the burden of cancer care, factors that influence comfort with randomisation and the importance of cancer research.Design Prospective, cross-sectional patient survey.Setting Outpatient sarcoma clinics in Canada, the USA and Spain between May 2017 and April 2020. Survey data were entered into a study-specific database.Participants Patients with extremity sarcoma who had completed definitive treatment from seven clinics across Canada, the USA and Spain.Main outcome measures The proportion of patients with extremity sarcoma who would be willing to participate in a randomised controlled trial (RCT) that evaluates varying postoperative cancer surveillance regimens.Results One hundred thirty complete surveys were obtained. Respondents reported a wide range of burdens related to clinical care and surveillance. The majority of patients (85.5%) responded that they would agree to participate in a cancer surveillance RCT if eligible. The most common reason to participate was that they wanted to help future patients. Those that would decline to participate most commonly reported that participating in research would be too much of a burden for them at a time when they are already feeling overwhelmed. However, most patients agreed that cancer research will help doctors better understand and treat cancer.Conclusions These results demonstrate that most participants would be willing to participate in an RCT that evaluates varying postoperative cancer surveillance regimens. Participants’ motivation for trial participation included altruistic reasons to help future patients and deterrents to trial participation included the overwhelming burden of a cancer diagnosis. These results will help inform the development of patient-centred RCT protocols in sarcoma surveillance research.Level of evidence V.https://bmjopen.bmj.com/content/11/2/e042742.full |
| spellingShingle | Kevin Jones David Wilson Michelle Ghert James Hayden Benjamin Miller Patricia Schneider Robert Turcotte Roberto Velez Victoria Giglio Dana Ghanem Marc Isler Sophie Mottard Yee-Cheen Doung Kenneth Gundle R Lor Randall Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey BMJ Open |
| title | Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey |
| title_full | Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey |
| title_fullStr | Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey |
| title_full_unstemmed | Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey |
| title_short | Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey |
| title_sort | willingness of patients with sarcoma to participate in cancer surveillance research a cross sectional patient survey |
| url | https://bmjopen.bmj.com/content/11/2/e042742.full |
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