<?xml version='1.0' encoding='UTF-8'?>
<codeBook version="1.2.2" ID="10.16909-dataset-57" xml-lang="en" xmlns="http://www.icpsr.umich.edu/DDI" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.icpsr.umich.edu/DDI http://www.icpsr.umich.edu/DDI/Version1-2-2.xsd">
  <docDscr>
    <citation>
      <titlStmt>
        <titl>
           The Swiss Cancer Patient Experiences-CH (SCAPE-CH) survey
        </titl>
        <subTitl>
           
        </subTitl>
        <altTitl>
           
        </altTitl>
      </titlStmt>
      <prodStmt>
        <software version="1.2" date="2011-01-07">
          Metadata Editor
        </software>
      </prodStmt>
      <distStmt>
        
      </distStmt>
    </citation>
    <guide>
      <![CDATA[ ]]>
    </guide>
    <notes>
      <![CDATA[ ]]>
    </notes>
  </docDscr>
  <stdyDscr>
    <citation>
      <titlStmt>
        <titl>
          The Swiss Cancer Patient Experiences-CH (SCAPE-CH) survey
        </titl>
        <subTitl>
          A multicenter cross-sectional survey of patient experiences with cancer care across Switzerland
        </subTitl>
        <altTitl>
          SCAPE-CH
        </altTitl>
        <parTitl>
          
        </parTitl>
        <IDNo>
          10.16909-dataset-57
        </IDNo>
      </titlStmt>
      <rspStmt>
        <AuthEnty affiliation="Center for Primary Care and Public Health (Unisanté)">Arditi Chantal </AuthEnty>
<AuthEnty affiliation="Center for Primary Care and Public Health (Unisanté)">Peytremann-Bridevaux Isabelle </AuthEnty>
<AuthEnty affiliation="Institute of Higher Education and Research in Healthcare (IUFRS) and Lausanne University Hospital (CHUV)">Eicher Manuela </AuthEnty>

        <othId affiliation="" role="Participants">
<p>Patients with cancer</p>
</othId>

      </rspStmt>
      <prodStmt>
        <producer abbr="" affiliation="Center for Primary Care and Public Health (Unisanté)" role="Junior researcher">Berrut Sylvan </producer>
<producer abbr="" affiliation="Center for Primary Care and Public Health (Unisanté)" role="Junior researcher">Rezzonico Valérie </producer>
<producer abbr="" affiliation="" role="Patient Partner in steering committee">Bienvenu Christine </producer>
<producer abbr="" affiliation="" role="Patient Partner in steering committee">Ganz-Blättler Ursula </producer>
<producer abbr="" affiliation="" role="Patient Partner in steering committee">Fiscalini Aldo </producer>
<producer abbr="" affiliation="Kantonsspital Luzern" role="Oncology director, responsible for the survey site">Aebi Stefan</producer>
<producer abbr="" affiliation="Zuger Kantonsspital" role="Oncology director, responsible for the survey site">Dürr Donat</producer>
<producer abbr="" affiliation="Lausanne University Hospital" role="Oncology director, responsible for the survey site">Peters Solange</producer>
<producer abbr="" affiliation="University Hospital Zurich" role="Oncology director, responsible for the survey site">Wicki Andreas</producer>
<producer abbr="" affiliation="Swiss Medical Network, Clinique de Genolier et Générale-Beaulieu" role="Project manager, responsible for survey site">Le Gallic Esthelle</producer>
<producer abbr="" affiliation="Hôpital Fribourgeois" role="Oncology director, responsible for the survey site">Curioni-Fontecedro Alessandra</producer>
<producer abbr="" affiliation="Hôpital du Jura" role="Oncology director, responsible for the survey site">Mercier Ludivine</producer>
<producer abbr="" affiliation="Hôpital Riviera-Chablais" role="Oncology director, responsible for the survey site">Salati Emanuela</producer>
<producer abbr="" affiliation="Geneva University Hospitals" role="Oncology director, responsible for the survey site">Addeo Alfredo </producer>
<producer abbr="" affiliation="University Cancer Center Inselspital" role="Oncology director, responsible for the survey site">Aebersold Daniel</producer>
<producer abbr="" affiliation="Kantonsspital Baden" role="Head of oncology, responsible for the survey site">Bützberger Priska </producer>
<producer abbr="" affiliation="Kantonsspital Graubünden" role="Head of oncology, responsible for the survey site">Cathomas Richard </producer>
<producer abbr="" affiliation="Kantonsspital St.Gallen" role="Head nurse, responsible for the survey site">Matthias Hellberg-Naegele</producer>
<producer abbr="" affiliation="Lindenhofgruppe" role="Head of quality service, responsible for the survey site">Voldrich Simone </producer>
<producer abbr="" affiliation="Solothurner Spitäler" role="Head of oncology, responsible for the survey site">Mingrone Walter </producer>
<producer abbr="" affiliation="Tumor Zentrum Aargau " role="Head of oncology, responsible for the survey site">Popescu Razvan Andrei </producer>
<producer abbr="" affiliation="Universitätsspital Basel" role="Head of oncology, responsible for the survey site">Kasenda Benjamin </producer>
<producer abbr="" affiliation="Ente Ospedaliero Cantonale" role="Head of oncology, responsible for the survey site">Sessa Cristiana </producer>
<producer abbr="" affiliation="Hôpital La Tour" role="Head of quality service,  responsible for the survey site">Alibert Axelle </producer>
<producer abbr="" affiliation="Réseau Hospitalier Neuchâtelois" role="Head of oncology, responsible for the survey site">Stern Alix</producer>

        <copyright>
          (c) 2025, Unisanté, University Center for Primary Care and Public Health, Lausanne, Switzerland
        </copyright>
        <software version="1.2" date="2011-01-07">
          Metadata Editor
        </software>
        <fundAg abbr="CFQ" role="Financial contribution">Commission Fédérale pour la Qualité</fundAg>
<grantNo agency="Commission Fédérale pour la Qualité" role="Financial contribution"></grantNo>

      </prodStmt>
      <distStmt>
        <contact affiliation="Center for Primary Care and Public Health (Unisanté)" email="chantal.arditi@unisante.ch" URI="">Arditi Chantal</contact>

      </distStmt>
      <serStmt>
        <serName>
          Demographic and Health Survey [hh/dhs]
        </serName>
        <serInfo>
          <![CDATA[This is the 3rd iteration of the SCAPE survey, after SCAPE-1 in 2018 and SCAPE-2 in 2021.]]>
        </serInfo>
      </serStmt>
      <verStmt>
        <version date="2025-03-12">
          <![CDATA[version 1.0: edited data, for internal use]]>
        </version>
        <verResp affiliation=" "/>
        <notes>
          <![CDATA[]]>
        </notes>
      </verStmt>
    </citation>
    <stdyInfo>
      <subject>
        <keyword>Cancer</keyword>
		<keyword>Patient-reported experiences of care measures (PREMs)</keyword>
		<keyword>Quality of care</keyword>
      </subject>
      <abstract>
        <![CDATA[**INTRODUCTION**: Collecting patients’ 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.
**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. 
**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.]]>
      </abstract>
      <sumDscr>
        <collDate date="2023/09" event="start" cycle="" />
<collDate date="2024/04" event="end" cycle="" />

        
        <nation abbr="CHE">Switzerland</nation>

        <geogCover>
          <![CDATA[National coverage: 9 hospitals in French-speaking region; 11 hospitals in German-speaking region; 1 hospital in Italian-speaking region]]>
        </geogCover>
        <anlyUnit>
          <![CDATA[Patient]]>
        </anlyUnit>
        <universe>
          <![CDATA[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 Générale-Beaulieu, Hôpital du Jura (HJU), Hôpital Fribourgeois (HFR), Hôpital La Tour, Hôpital Riviera-Chablais (HRC), Hôpitaux Universitaires de Genève (HUG), Réseau Hospitalier Neuchâtelois (RHNe), Inselspital, Universitätsspital Bern (INSEL), Kantonsspital Baden (KSB), Kantonsspital Graubünden (KSGR), Kantonsspital Luzern (LUKS), Kantonsspital St.Gallen (KSSG), Lindenhofgruppe, Solothurner Spitäler (SOH), Tumor Zentrum Aargau (TZA), Universitätsspital Basel (USB), Universitätsspital Zürich (USZ), Zuger Kantonsspital (ZGKS)]]>
        </universe>
        <dataKind>
          Sample survey data [ssd]
        </dataKind>
      </sumDscr>
      <notes>
        <![CDATA[The scope of the SCAPE survey includes:
- 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
- CLINICAL AND HEALTH CHARACTERISTICS: type of cancer, treatments, co-morbidities, general health, quality of life, anxiety, depression, concerns
- PERSONAL INFORMATION: gender, age, language spoken, nationality, civil status, living situation, education, work situation, financial situation
- FINANCIAL IMPACT OF CANCER: sacrifices, job, carer]]>
      </notes>
    </stdyInfo>
    <method>
      <dataColl>
        <dataCollector abbr="" affiliation="">Unisanté</dataCollector>

        <sampProc>
          <![CDATA[Up to 900 eligible patients per participating hospital; random selection if >900]]>
        </sampProc>
        <deviat>
          <![CDATA[]]>
        </deviat>
        <collMode>
          Mail Questionnaire [mail]
        </collMode>
        <resInstru>
          <![CDATA[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.]]>
        </resInstru>
        <sources/>
        <collSitu>
          <![CDATA[]]>
        </collSitu>
        <actMin>
          <![CDATA[]]>
        </actMin>
        <weight>
          <![CDATA[n/a]]>
        </weight>
        <cleanOps>
          <![CDATA[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. ]]>
        </cleanOps>
      </dataColl>
      <notes>
        <![CDATA[]]>
      </notes>
      <anlyInfo>
        <respRate>
          <![CDATA[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)]]>
        </respRate>
        <EstSmpErr>
          <![CDATA[]]>
        </EstSmpErr>
        <dataAppr>
          <![CDATA[]]>
        </dataAppr>
      </anlyInfo>
    </method>
    <dataAccs>
      <useStmt>
        <confDec required="yes">
          <![CDATA[Deidentified data]]>
        </confDec>
        <contact affiliation="Unisanté, University Center for Primary Care and Public Health, Lausanne, Switzerland" email="udd.data@unisante.ch" URI="https://www.unisante.ch/fr/formation-recherche/bibliotheque">Documentation and data unit (UDD)</contact>

        <citReq>
          <![CDATA[Arditi C, Peytremann Bridevaux I, Eicher M. Swiss Cancer Patient Experiences-CH (SCAPE-CH) study. Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland. Version 1.0 of the licensed dataset (01/2025), provided by the Unisanté Research Data Repository. DOI:https://doi.org/10.16909/DATASET/57]]>
        </citReq>
        <conditions>
          <![CDATA[Licensed dataset, accessible under conditions and following review.]]>
        </conditions>
        <disclaimer>
          <![CDATA[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.]]>
        </disclaimer>
      </useStmt>
    </dataAccs>
  </stdyDscr>
  <dataDscr/>
</codeBook>
