{"doc_desc":{"title":"The Swiss Cancer Patient Experiences-CH (SCAPE-CH) survey"},"study_desc":{"title_statement":{"idno":"10.16909-dataset-57","title":"The Swiss Cancer Patient Experiences-CH (SCAPE-CH) survey","sub_title":"A multicenter cross-sectional survey of patient experiences with cancer care across Switzerland","alternate_title":"SCAPE-CH"},"authoring_entity":[{"name":"Arditi Chantal","affiliation":"Center for Primary Care and Public Health (Unisant\u00e9)"},{"name":"Peytremann-Bridevaux Isabelle","affiliation":"Center for Primary Care and Public Health (Unisant\u00e9)"},{"name":"Eicher Manuela","affiliation":"Institute of Higher Education and Research in Healthcare (IUFRS) and Lausanne University Hospital (CHUV)"}],"oth_id":[{"name":"Patients with cancer","affiliation":"","email":"","role":"Participants"}],"production_statement":{"producers":[{"name":"Berrut Sylvan","abbr":"","affiliation":"Center for Primary Care and Public Health (Unisant\u00e9)","role":"Junior researcher"},{"name":"Rezzonico Val\u00e9rie","abbr":"","affiliation":"Center for Primary Care and Public Health (Unisant\u00e9)","role":"Junior researcher"},{"name":"Bienvenu Christine","abbr":"","affiliation":"","role":"Patient Partner in steering committee"},{"name":"Ganz-Bl\u00e4ttler Ursula","abbr":"","affiliation":"","role":"Patient Partner in steering committee"},{"name":"Fiscalini Aldo","abbr":"","affiliation":"","role":"Patient Partner in steering committee"},{"name":"Aebi Stefan","abbr":"","affiliation":"Kantonsspital Luzern","role":"Oncology director, responsible for the survey site"},{"name":"D\u00fcrr Donat","abbr":"","affiliation":"Zuger Kantonsspital","role":"Oncology director, responsible for the survey site"},{"name":"Peters Solange","abbr":"","affiliation":"Lausanne University Hospital","role":"Oncology director, responsible for the survey site"},{"name":"Wicki Andreas","abbr":"","affiliation":"University Hospital Zurich","role":"Oncology director, responsible for the survey site"},{"name":"Le Gallic Esthelle","abbr":"","affiliation":"Swiss Medical Network, Clinique de Genolier et G\u00e9n\u00e9rale-Beaulieu","role":"Project manager, responsible for survey site"},{"name":"Curioni-Fontecedro Alessandra","abbr":"","affiliation":"H\u00f4pital Fribourgeois","role":"Oncology director, responsible for the survey site"},{"name":"Mercier Ludivine","abbr":"","affiliation":"H\u00f4pital du Jura","role":"Oncology director, responsible for the survey site"},{"name":"Salati Emanuela","abbr":"","affiliation":"H\u00f4pital Riviera-Chablais","role":"Oncology director, responsible for the survey site"},{"name":"Addeo Alfredo","abbr":"","affiliation":"Geneva University Hospitals","role":"Oncology director, responsible for the survey site"},{"name":"Aebersold Daniel","abbr":"","affiliation":"University Cancer Center Inselspital","role":"Oncology director, responsible for the survey site"},{"name":"B\u00fctzberger Priska","abbr":"","affiliation":"Kantonsspital Baden","role":"Head of oncology, responsible for the survey site"},{"name":"Cathomas Richard","abbr":"","affiliation":"Kantonsspital Graub\u00fcnden","role":"Head of oncology, responsible for the survey site"},{"name":"Matthias Hellberg-Naegele","abbr":"","affiliation":"Kantonsspital St.Gallen","role":"Head nurse, responsible for the survey site"},{"name":"Voldrich Simone","abbr":"","affiliation":"Lindenhofgruppe","role":"Head of quality service, responsible for the survey site"},{"name":"Mingrone Walter","abbr":"","affiliation":"Solothurner Spit\u00e4ler","role":"Head of oncology, responsible for the survey site"},{"name":"Popescu Razvan Andrei","abbr":"","affiliation":"Tumor Zentrum Aargau ","role":"Head of oncology, responsible for the survey site"},{"name":"Kasenda Benjamin","abbr":"","affiliation":"Universit\u00e4tsspital Basel","role":"Head of oncology, responsible for the survey site"},{"name":"Sessa Cristiana","abbr":"","affiliation":"Ente Ospedaliero Cantonale","role":"Head of oncology, responsible for the survey site"},{"name":"Alibert Axelle","abbr":"","affiliation":"H\u00f4pital La Tour","role":"Head of quality service,  responsible for the survey site"},{"name":"Stern Alix","abbr":"","affiliation":"R\u00e9seau Hospitalier Neuch\u00e2telois","role":"Head of oncology, responsible for the survey site"}],"copyright":"(c) 2025, Unisant\u00e9, University Center for Primary Care and Public Health, Lausanne, Switzerland","funding_agencies":[{"name":"Commission F\u00e9d\u00e9rale pour la Qualit\u00e9","abbr":"CFQ","role":"Financial contribution"}]},"distribution_statement":{"contact":[{"name":"Arditi Chantal","affiliation":"Center for Primary Care and Public Health (Unisant\u00e9)","email":"chantal.arditi@unisante.ch","uri":""}]},"series_statement":{"series_name":"Demographic and Health Survey [hh\/dhs]","series_info":"This is the 3rd iteration of the SCAPE survey, after SCAPE-1 in 2018 and SCAPE-2 in 2021."},"version_statement":{"version":"version 1.0: edited data, for internal use","version_date":"2025-03-12"},"study_info":{"keywords":[{"keyword":"Cancer","vocab":"","uri":""},{"keyword":"Patient-reported experiences of care measures (PREMs)","vocab":"","uri":""},{"keyword":"Quality of care","vocab":"","uri":""}],"abstract":"**INTRODUCTION**: Collecting patients\u2019 experiences with care provision is essential to evaluate the quality of care in general, and responsiveness of care in particular, one of the core dimensions of high-quality care. These measures are particularly important when caring for people with chronical diseases such as cancer, as care is often long-term and complex, involving a multitude of health professionals. After a first and second survey conducted in 2018 and 2021, we conducted a third survey in 2023 to collect patient-reported experiences of care measures (PREMs). The main objective was to explore experiences of care of people treated for any type of cancer in hospitals across Switzerland.\n**METHODS**: Patients from the 21 participating cancer centers across all linguistic regions in Switzerland received the paper questionnaire at home, with the possibility of completing the questionnaire online, in October 2023. The questionnaire includes questions about experiences of care before the diagnosis, at diagnosis (e.g., diagnostic testing, communication about the cancer diagnosis, decision-making about the cancer treatment), during inpatient and outpatient care at the hospital (including experiences related to cancer surgery, radiotherapy and chemotherapy), as well as experiences with home care and support and survivorship care. \n**RESULTS**: Of the 16,963 patients invited to participate in the survey, 7,844 completed and returned the questionnaire, resulting in a participation rate of 46%. The results indicate a high overall level of satisfaction with the care received. Key strengths include diagnostic examinations (information and timeliness), inpatient hospital care (being treated with respect, pain management, staff availability), and information provided about treatment options and treatments received. However, the findings also highlight areas for improvement in several key domains: support and involvement of carers, information and support regarding long-term side effects, and post-treatment support (home care and follow-up). Additionally, communication about financial assistance and social resources could be improved to better meet patients' needs.","coll_dates":[{"start":"2023\/09","end":"2024\/04","cycle":""}],"nation":[{"name":"Switzerland","abbreviation":"CHE"}],"geog_coverage":"National coverage: 9 hospitals in French-speaking region; 11 hospitals in German-speaking region; 1 hospital in Italian-speaking region","analysis_unit":"Patient","universe":"Adult patients diagnosed with cancer, who had a inpatient or outpatient episode of care between January 1 and June 30 2023, in one of the 21 participating hospitals: Centre Hospitalier Universitaire Vaudois (CHUV), Clinique de Genolier, Clinique G\u00e9n\u00e9rale-Beaulieu, H\u00f4pital du Jura (HJU), H\u00f4pital Fribourgeois (HFR), H\u00f4pital La Tour, H\u00f4pital Riviera-Chablais (HRC), H\u00f4pitaux Universitaires de Gen\u00e8ve (HUG), R\u00e9seau Hospitalier Neuch\u00e2telois (RHNe), Inselspital, Universit\u00e4tsspital Bern (INSEL), Kantonsspital Baden (KSB), Kantonsspital Graub\u00fcnden (KSGR), Kantonsspital Luzern (LUKS), Kantonsspital St.Gallen (KSSG), Lindenhofgruppe, Solothurner Spit\u00e4ler (SOH), Tumor Zentrum Aargau (TZA), Universit\u00e4tsspital Basel (USB), Universit\u00e4tsspital Z\u00fcrich (USZ), Zuger Kantonsspital (ZGKS)","data_kind":"Sample survey data [ssd]","notes":"The scope of the SCAPE survey includes:\n- EXPERIENCES OF CARE: before the cancer diagnosis, diagnostic tests, communication about the cancer diagnosis and decision-making about the cancer treatment, inpatient care, outpatient care, nursing consultations, treatments, home care & support, survivorship care, care from GP, support for cancer patients, overall care\n- CLINICAL AND HEALTH CHARACTERISTICS: type of cancer, treatments, co-morbidities, general health, quality of life, anxiety, depression, concerns\n- PERSONAL INFORMATION: gender, age, language spoken, nationality, civil status, living situation, education, work situation, financial situation\n- FINANCIAL IMPACT OF CANCER: sacrifices, job, carer"},"method":{"data_collection":{"data_collectors":[{"name":"Unisant\u00e9","abbr":"","role":"","affiliation":""}],"sampling_procedure":"Up to 900 eligible patients per participating hospital; random selection if >900","coll_mode":["Mail Questionnaire [mail]"],"research_instrument":"The questionnaire included 89 closed questions (64 questions on experiences of care; 12 questions on cancer and health status; 10 questions on socio-demographic characteristics; 3 questions on financial impact of cancer) and 3 free-text sections.","sources":[{"name":"","origin":"","characteristics":""}],"weight":"n\/a","cleaning_operations":"Data from paper and online questionnaires were merged after careful verification of all coding. Data were checked for inconsistency (multiple check marks when only one allowed). If two adjacent responses were checked, we randomly selected one of the responses."},"analysis_info":{"response_rate":"Crude response rate: 46.2%. Ajusted response rate: 48.5% (people reported as deceased, people without cancer, duplicates and undelivered envelopes\/emails removed from denominator)"}},"data_access":{"dataset_use":{"conf_dec":[{"txt":"Deidentified data","required":"yes","form_no":"","form_uri":""}],"contact":[{"name":"Documentation and data unit (UDD)","affiliation":"Unisant\u00e9, University Center for Primary Care and Public Health, Lausanne, Switzerland","email":"udd.data@unisante.ch","uri":"https:\/\/www.unisante.ch\/fr\/formation-recherche\/bibliotheque"}],"cit_req":"Arditi C, Peytremann Bridevaux I, Eicher M. Swiss Cancer Patient Experiences-CH (SCAPE-CH) study. Center for Primary Care and Public Health (Unisant\u00e9), University of Lausanne, Switzerland. Version 1.0 of the licensed dataset (01\/2025), provided by the Unisant\u00e9 Research Data Repository. DOI:https:\/\/doi.org\/10.16909\/DATASET\/57","conditions":"Licensed dataset, accessible under conditions and following review.","disclaimer":"The user of the data acknowledges that the original collector of the data, the authorized distributor of the data, and the relevant funding agency bear no responsibility for use of the data or for interpretations or inferences based upon such uses."}}},"schematype":"survey","tags":[{"tag":"Humans"}]}