Swiss Cancer Patient Experiences (SCAPE) study, A multicenter cross-sectional survey of patient experiences with cancer care in the French-speaking part of Switzerland
Switzerland, 2018 - 2019
Peytremann Bridevaux Isabelle, Eicher, Manuela
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April 28, 2020
Last modified
April 29, 2020
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Identification
Survey ID Number
10.16909-DATASET-20
Title
Swiss Cancer Patient Experiences (SCAPE) study, A multicenter cross-sectional survey of patient experiences with cancer care in the French-speaking part of Switzerland
Subtitle
A multicenter cross-sectional survey of patient experiences with cancer care in the French-speaking part of Switzerland
Translated Title
Etude sur le vécu des patient·e·s en soins oncologiques
Country
| Name | Country code |
|---|---|
| Switzerland | CHE |
Abstract
Collecting patients’ experiences with care provision is essential to evaluate the quality and safety of care in general, and patient-centeredness in particular, one of the core dimensions of high-quality care. In Switzerland, patient experience data are collected nationally through a short survey for inpatient acute care, rehabilitation care and psychiatric care. To date, we lack data regarding cancer care, despite advocacy for specific surveys to account for the complex treatment pathways. Our main study objective was to conduct a cancer patient experience survey in the French-speaking part of Switzerland to provide robust evidence on the perceived quality of cancer care.
The Swiss Cancer Patient Experience (SCAPE) was a cross-sectional multicenter survey, conducted between October 2018 and March 2019, among cancer patients diagnosed with the six most frequent cancers from four large cancer centers in Romandy, the French-speaking part of Switzerland. Data were collected with a self-administered questionnaire, including questions on experiences of care as well as socio-demographic and clinical characteristics. Of the 7145 adult patients invited to complete the questionnaire, 3121 patients returned it (43.7% response rate). Of these, 2755 (88%) reported at least one eligible cancer (breast, prostate, lung, colorectal, melanoma, or hematological) and were included in the descriptive analyses.
Patients rated their overall care at 8.5 on average (1.4 standard deviation) on a 0-10 scale. Over 80% of patients reported positive experiences with diagnostic tests, clinical nurse specialists, and hospital care as inpatient (e.g. confidence and trust in doctors, treated with respect and dignity, enough nurses on duty). However, less than 50% of patients reported positive experiences in relation to the information received at diagnosis and about treatment side-effects and symptoms, and in relation to supportive care issues, in particular regarding psycho-social, financial, family- and survivorship-related aspects of care.
In this first overview of patient experiences with cancer care in Romandy, we identified areas of cancer care that are more positively and less positively evaluated by a large number of patients. Our results are currently being discussed with the participating cancer centers to guide local initiatives to further improve the quality and patient-centeredness of cancer care in Switzerland.
The Swiss Cancer Patient Experience (SCAPE) was a cross-sectional multicenter survey, conducted between October 2018 and March 2019, among cancer patients diagnosed with the six most frequent cancers from four large cancer centers in Romandy, the French-speaking part of Switzerland. Data were collected with a self-administered questionnaire, including questions on experiences of care as well as socio-demographic and clinical characteristics. Of the 7145 adult patients invited to complete the questionnaire, 3121 patients returned it (43.7% response rate). Of these, 2755 (88%) reported at least one eligible cancer (breast, prostate, lung, colorectal, melanoma, or hematological) and were included in the descriptive analyses.
Patients rated their overall care at 8.5 on average (1.4 standard deviation) on a 0-10 scale. Over 80% of patients reported positive experiences with diagnostic tests, clinical nurse specialists, and hospital care as inpatient (e.g. confidence and trust in doctors, treated with respect and dignity, enough nurses on duty). However, less than 50% of patients reported positive experiences in relation to the information received at diagnosis and about treatment side-effects and symptoms, and in relation to supportive care issues, in particular regarding psycho-social, financial, family- and survivorship-related aspects of care.
In this first overview of patient experiences with cancer care in Romandy, we identified areas of cancer care that are more positively and less positively evaluated by a large number of patients. Our results are currently being discussed with the participating cancer centers to guide local initiatives to further improve the quality and patient-centeredness of cancer care in Switzerland.
Kind of Data
Self-reported data collected from paper and online questionnaire
Unit of Analysis
Individual. N=2755
Version
Version Description
Version 1.0
Version Date
2020-04-20
Scope
Keywords
| Keyword |
|---|
| Cancer |
| Romandy |
| Switzerland |
| patient survey |
| patient-reported experience measure (PREM) |
| patient satisfaction |
| quality of care |
Coverage
Geographic Coverage
French-speaking part of Switzerland
Universe
Adult patients with breast, prostate, lung, colorectal, melanoma, or hematological cancer from four hospitals in the French-speaking part of Switzerland: Lausanne University Hospital (CHUV), Hôpital Fribourgeois (HFR), Geneva University Hospitals (HUG), Hôpital du Valais (HVS)
Producers and sponsors
Primary investigators
| Name | Affiliation |
|---|---|
| Peytremann Bridevaux Isabelle | Center for Primary Care and Public Health (Unisanté) |
| Eicher, Manuela | Institute of Higher Education and Research in Healthcare (IUFRS) and Department of Oncology, Lausanne University Hospital |
Funding Agency/Sponsor
| Name | Abbreviation |
|---|---|
| Swiss Cancer Research foundation | SCR |
Other Identifications/Acknowledgments
| Name | Affiliation | Role |
|---|---|---|
| Anchisi, Sandro | Department of Oncology, Hôpital du Valais | Oncology director, responsible for the study site |
| Arditi, Chantal | Center for Primary Care and Public Health (Unisanté) | Study coordinator |
| Betticher, Daniel | Department of Onco-hematology, Hôpital Fribourgeois | Oncology director, responsible for the study site |
| Bienvenu, Christine | Center for Primary Care and Public Health (Unisanté) | Expert patient in steering committee |
| Dietrich, Pierre-Yves | Department of Oncology, Geneva University Hospitals | Oncology director, responsible for the study site |
| Duchosal, Michel | Department of Oncology, Lausanne University Hospital | Onco-hematology director, responsible for the study site |
| Griesser, Anne-Claude | Lausanne University Hospital | Member of steering committee |
| Matzinger, Oscar | Genolier clinic | Member of steering committee |
| Patients with cancer | Completed the questionnaire | |
| Peters, Solange | Department of Oncology, Lausanne University Hospital | Medical oncology director, responsible for the study site |
Sampling
Sampling Procedure
All patients meeting inclusion criteria.
Data Collection
Dates of Data Collection
| Start | End |
|---|---|
| 2018-10-22 | 2019-03-31 |
Data Collection Mode
Paper and online questionnaire, self-administered at home.
Questionnaires
Questionnaires
SCAPE Questionnaire including 94 closed questions (65 questions on experiences of care; 15 questions on health status; 14 questions on socio-demographic characteristics) and 1 free-text section.
Data Processing
Data Editing
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). We also considered hand written comments next to questions to edit the answer if necessary. Patients reporting a cancer that was not in the study inclusion criteria were excluded from the final dataset (n=366).
Access policy
Access authority
| Name | Affiliation | |
|---|---|---|
| Peytremann Bridevaux, Isabelle (Principal investigator) | Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland | isabelle.peytremann-bridevaux@unisante.ch |
| Eicher, Manuela (Co-Principal investigator) | Institute of Higher Education and Research in Healthcare (IUFRS) | manuela.eicher@chuv.ch |
| Arditi, Chantal (Study coordinator) | Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland | chantal.arditi@unisante.ch |
| Racine, Céline (Repository manager) | Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland | dfri.data@unisante.ch |
Confidentiality
Access conditions
Licensed datasets, accessible under conditions
To request access to licensed datasets, please register to the website to continue (https://data.unisante.ch/index.php/auth/register). Once your registration will be approved you must login and go to the "GET MICRODATA" tab and fill in the application form for access to the licensed dataset.
This form includes our Data access agreement and must be filled and submitted by the Lead Researcher. Lead Researcher refers to the person who serves as the main point of contact for all communications involving this agreement. Access to licensed datasets will only be granted when the Lead Researcher is an employee of a legally registered receiving agency (university, company, research centre, national or international organization, etc.) on behalf of which access to the data is requested. The Lead Researcher assumes all responsibility for compliance with all terms of this Data Access Agreement by employees of the receiving organization.
This request will be reviewed by the Primary Investigator, who may decide to approve the request, to deny access to the data, or to request additional information from the Lead Researcher. A signed copy of this request form may also be requested.
If special conditions apply to the transfer of the requested data (e.g. transfer under a contract between IUMSP and a third party), the references of the contract concerned or the document in which the conditions are specified must be referenced in the request form. The person who makes the request will still need to check the box confirming the acceptance of the terms of use, it being understood that the conditions written in the above mentioned contract will apply.
To request access to licensed datasets, please register to the website to continue (https://data.unisante.ch/index.php/auth/register). Once your registration will be approved you must login and go to the "GET MICRODATA" tab and fill in the application form for access to the licensed dataset.
This form includes our Data access agreement and must be filled and submitted by the Lead Researcher. Lead Researcher refers to the person who serves as the main point of contact for all communications involving this agreement. Access to licensed datasets will only be granted when the Lead Researcher is an employee of a legally registered receiving agency (university, company, research centre, national or international organization, etc.) on behalf of which access to the data is requested. The Lead Researcher assumes all responsibility for compliance with all terms of this Data Access Agreement by employees of the receiving organization.
This request will be reviewed by the Primary Investigator, who may decide to approve the request, to deny access to the data, or to request additional information from the Lead Researcher. A signed copy of this request form may also be requested.
If special conditions apply to the transfer of the requested data (e.g. transfer under a contract between IUMSP and a third party), the references of the contract concerned or the document in which the conditions are specified must be referenced in the request form. The person who makes the request will still need to check the box confirming the acceptance of the terms of use, it being understood that the conditions written in the above mentioned contract will apply.
Citation requirements
Peytremann Bridevaux, Isabelle, Eicher, Manuela, Arditi, Chantal. The Swiss Cancer Patient Experiences (SCAPE) study: a multicenter cross-sectional survey of patient experiences with cancer care in the French-speaking part of Switzerland. Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland. Version 1.0 of the licensed dataset (April 2020), provided by the Unisanté Research Data Repository. DOI:10.16909/DATASET/20
Disclaimer and copyrights
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.
Copyright
(c) 2020, Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland
Metadata production
DDI Document ID
10.16909-DATASET-20
Producers
| Name | Abbreviation | Role |
|---|---|---|
| Center for Primary Care and Public Health (Unisanté), University of Lausanne, Switzerland | Unisanté | Data publisher |
DDI Document version
Version 2.0 (april 2020)