1. Willingness of patients with sarcoma to participate in cancer surveillance research: a cross-sectional patient survey
- Author
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Roberto Vélez, Victoria Giglio, Dana Ghanem, Michelle Ghert, Marc H. Isler, David A. Wilson, Benjamin J. Miller, Yee Cheen Doung, Kenneth R. Gundle, Kevin B. Jones, Robert E. Turcotte, James B. Hayden, Sophie Mottard, R. Lor Randall, Patricia Schneider, Institut Català de la Salut, [Schneider P, Giglio V, Ghanem D, Wilson D] Department of Surgery, McMaster University, Hamilton, Ontario, Canada. [Turcotte R] Division of Orthopaedic Surgery, McGill University Health Centre, Montreal, Québec, Canada. [Isler M] Department of Orthopaedic Oncology, University of Montreal, Hopital Maisonneuve-Rosemont, Montreal, Québec, Canada. [Vélez R] Servei de Cirurgia Ortopèdica i Traumatologia, Vall d’Hebron Hospital Universitari, Barcelona, Spain, and Vall d'Hebron Barcelona Hospital Campus
- Subjects
sarcoma ,statistics & research methods ,Investigative Techniques::Epidemiologic Methods::Epidemiologic Study Characteristics::Epidemiologic Studies::Cross-Sectional Studies [ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT] ,law.invention ,0302 clinical medicine ,Randomized controlled trial ,law ,Medicine ,030212 general & internal medicine ,Cancer ,media_common ,Randomized Controlled Trials as Topic ,Neoplasms::Neoplasms by Histologic Type::Neoplasms, Connective and Soft Tissue::Sarcoma [DISEASES] ,Outcome measures ,General Medicine ,Behavior and Behavior Mechanisms::Motivation [PSYCHIATRY AND PSYCHOLOGY] ,técnicas de investigación::métodos epidemiológicos::características de los estudios epidemiológicos::estudios epidemiológicos::estudios transversales [TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS] ,Feeling ,Oncology ,030220 oncology & carcinogenesis ,Public Health and Health Services ,Patient survey ,Sarcoma ,neoplasias::neoplasias por tipo histológico::neoplasias de tejido conjuntivo y de tejidos blandos::sarcoma [ENFERMEDADES] ,medicine.medical_specialty ,Canada ,media_common.quotation_subject ,Clinical Trials and Supportive Activities ,Clinical Sciences ,conducta y mecanismos de la conducta::motivación [PSIQUIATRÍA Y PSICOLOGÍA] ,7.3 Management and decision making ,03 medical and health sciences ,Clinical Research ,Humans ,Motivation ,clinical trials ,Other Medical and Health Sciences ,business.industry ,Evidence-based medicine ,medicine.disease ,Clinical trial ,Cross-Sectional Studies ,Spain ,Family medicine ,orthopaedic oncology ,Assaigs clínics - Mètodes estadístics ,business ,Pacients - Participació - Abstract
ObjectivesTo 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.DesignProspective, cross-sectional patient survey.SettingOutpatient sarcoma clinics in Canada, the USA and Spain between May 2017 and April 2020. Survey data were entered into a study-specific database.ParticipantsPatients with extremity sarcoma who had completed definitive treatment from seven clinics across Canada, the USA and Spain.Main outcome measuresThe 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.ResultsOne 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.ConclusionsThese 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 evidenceV.
- Published
- 2021