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Patients' experiences with cancer care in Switzerland: Results of a multicentre cross‐sectional survey

Abstract Objectives The objectives were to describe patients' experiences of cancer care in Switzerland and explore the variation of these experiences by type of cancer. Methods The Swiss Cancer Patient Experiences (SCAPE) study was a cross‐sectional, multicentre survey conducted in 2018. Adult patients (n = 7145) with breast, prostate, lung, colorectal, skin or haematological cancer from four large hospitals in French‐speaking Switzerland were invited to complete a survey. Logistic regressions were used to assess whether experiences varied according to cancer type, adjusting for confounders. Results Of the 3121 persons who returned the survey (44% response rate), 2755 reporting an eligible cancer were included in the analyses. Participants' average score for overall care was 8.5 out of a maximum score of 10. Higher rates of positive experiences were found for nurse consultations (94%), diagnostic tests (85%) and inpatient care (82%). Lower positive responses were reported for support for people with cancer (70%), treatment decisions (66%), diagnosis (65%) and home care (55%). We observed non‐systematic differences in experiences of care by cancer type. Conclusions This large study identified that cancer patient experiences can be improved in relation to communication, information and supportive care aspects. Improvement efforts should target these areas of care to enhance responsiveness of cancer care.


| INTRODUCTION
The importance of integrating patients' perspectives into clinical practice and research as well as into the evaluation of the quality of care has been recognised internationally (Institute of Medicine Committee on Quality of Health Care in America, 2001;Kelley & Hurst, 2006). More specifically, patients' perspectives are key to evaluate responsiveness of care. This core dimension of quality of care is defined as care that responds to people's physical, emotional, social and cultural needs, where interactions with health professionals are compassionate and empowering, and where people's values and preferences are taken into account ("What Is Patient-Centered Care?", 2017;The Health Foundation, 2016). Collecting patients' experiences of care through surveys using self-reported questionnaires is a widely used method to evaluate responsiveness of care on a large scale (Cleary, 2016;McKenna, 2011;Snyder et al., 2013). These surveys ask patients to rate their experience and satisfaction with health services, including experiences during hospital care, general practice care and home-based care. While earlier studies focused on patient satisfaction, more recent studies questioned its frequent ceiling effects and limited responsiveness. Consequently, studies shifted their focus on the underlying components of satisfaction, i.e. expectations and experiences, by collecting reports of what actually happened to patients during a hospital stay or medical consultation (Sixma et al., 1998). These reports, called patient-reported experience measures (PREMs), are also more actionable to drive interventions to improve responsiveness of care (Coulter et al., 2020).
In cancer care, evaluating responsiveness of care is especially relevant, as cancer carries an emotional, social and financial burden on patients and their carers in addition to the health burden and impact on quality of life. The use of cancer-specific PREMs are encouraged to account for the complex treatment pathways and to improve the interpretation of findings and prioritisation of quality improvement initiatives (Abel et al., 2014). Several countries have thus established wide-scaled measurement of cancer-specific PREMs to systematically examine cancer patient experiences. Such initiatives include the CAHPS Cancer Care survey in the United States (Agency for Healthcare Research and Quality, 2017), the NHS Cancer Patient Experience Survey in the UK (Abel et al., 2014), and the European Cancer Consumer Quality Index survey in six European countries (Wind et al., 2016). To date, similar standardised initiatives do not exist in Switzerland. Despite the efforts of the Swiss National Association for quality development in hospitals and clinics (ANQ) to collect PREMs using a 6-item generic questionnaire (Groupe qualité interdisciplinaire Satisfaction des patients [QA PatZu], 2017), no large-scale, comprehensive or systematic collection of cancer-specific PREMs has been established in Switzerland to date. This lack of standardised experience surveys might partly be related to the late implementation of a national quality commission in Switzerland, founded in 2021 only. There is thus a gap in measuring PREMS with a standardised instrument in routine cancer care in Switzerland, as well as a gap in Swiss research to inform and promote the use of PREMs in cancer care. To our knowledge, only a few studies focusing on cancer experiences in Switzerland have been published in the last 10 years, one of which was a single site qualitative study in paediatric oncology (Wangmo et al., 2016) and another one including breast cancer patients only (Brédart et al., 2013).
The assessment of experience variations according to cancer type is relevant to determine whether systematic differences of care exist.
Such analyses can inform the development of more targeted interventions within organ-specific cancer centres for instance. However, the current understanding of the variation of PREMS by organ (i.e. cancer diagnosis) is still limited, as large national surveys with sufficient patients diagnosed with different cancers enabling such analyses are relatively recent, with few studies investigating the impact of type of cancer on patient experiences (Saunders et al., 2015). Previous studies have reported mixed results, with better experiences reported in general for breast cancer and skin cancer and worse experiences for prostate and colorectal cancers (Bone et al., 2014;Clucas, 2016;El Turabi et al., 2013;Heerdegen et al., 2017;Sherlaw-Johnson et al., 2008). The observed differences could be explained by clinical features of different cancers, such as the diagnostic processes, the treatment burden and the prognosis, as suggested by Saunders and colleagues (Saunders et al., 2015).
The primary objective of the Swiss Cancer Patient Experiences (SCAPE) study was thus to describe the experience of care of patients with cancer treated in large hospitals in the French-speaking region of Switzerland. The secondary objective was to explore the variation of experiences of care by type of cancer, adjusting for confounders.

| Study design and population
The SCAPE study was an observational cross-sectional multicentre survey of patients diagnosed with cancer in four large hospitals in the French-speaking region of Switzerland. [Correction added on 6 October, after first online publication: The name of the study in this section was corrected in this version.] The patient inclusion criteria were predefined as all adult Swiss residents (≥18 years) with a confirmed diagnosis of one of the six most frequent cancers in Switzerland (i.e. breast, prostate, lung, colorectal, skin or haematological cancer [leukaemia, lymphoma and myeloma]) and who had had at least one hospitalisation or outpatient visit in an oncology unit at the recruiting hospital between 1 January 2018 and 30 June 2018. The diagnostic inclusion criteria was limited to six cancer types with high prevalence in Switzerland, based on the estimations of minimum sample size for the planned analyses by cancer types and the feasibility of the study. Patient selection procedure was performed by the local hospital teams, through manual review of patient lists in two hospitals and through data inquiries in electronic databases (including diagnostic codes) in the other two hospitals.

| Data collection
All data were collected using a paper and pencil or electronic selfadministered questionnaire. The paper questionnaire (with the option of completing the survey online) was sent out by each hospital to patients' home end of October 2018. A reminder was sent to nonrespondents in January 2019. Individuals who returned the questionnaire by the end of March 2019 and reported at least one of the eligible cancers were included in the analyses.

| Measures
The questionnaire was structured into three sections (Section 1: experiences of care; Section 2: cancer and health characteristics; Section 3: socio-demographic and economic characteristics) and space was provided at the end for free-text comments. The analyses of the free-text comments have been reported elsewhere (Arditi et al., 2020).
Section 1 on experiences of care included 46 evaluative questions on experiences of care (i.e. questions asking patient to evaluate an aspect of care), based on the 2016 version of the NHS Cancer Patients Experience Survey (CPES), originally developed in the UK (NHS England, 2021). With their approval, questions were translated into French and culturally adapted following international guidelines (Cull et al., 2002;Wild et al., 2005). The section included 14 subsections related to patient experiences throughout the care pathway, spanning from cancer diagnosis to follow-up care in the community (e.g. diagnostic tests; communication about the cancer diagnosis; decision-making about the cancer treatment and hospital care as inpatient). Seven of these subsections had filter questions, asking patients to answer only if they had had the targeted healthcare service (e.g. diagnostics tests, a hospitalisation or an ambulatory visit) within the last 12 months. Most questions had a 4-or 5-point Likert-type scale response options (e.g. yes, completely; yes, to some extent; no; not applicable; and don't know/can't remember); eight questions had binary response options (yes/no). The section ended with an overall satisfaction item (0 to 10 rating scale).
Section 2 on cancer and health characteristics included 15 questions on cancer diagnosis and treatments, other health conditions (list of 12 chronic conditions), overall health status (excellent, very good, good, poor, bad), quality of life (FACT-G7) (Yanez et al., 2013), two questions on depression symptoms (Whooley et al., 1997), and psycho-social characteristics (e.g. health literacy). Self-reports of cancer diagnosis and treatments were used as they have been extensively used in epidemiological and clinical studies and shown to be valid and sensitive (Kool et al., 2017;Navarro et al., 2006). Section 3 on socio-demographic and economic characteristics included 12 questions, such as age, sex, principal language (French, other), living status (alone/couple, with/without children, other), education, professional occupation, and financial hardship.

| Data analyses
For the descriptive analyses, the percentage of patients reporting a positive experience (dichotomous variable) was computed for the 46 evaluative questions, according to the methodology developed by the original CPES team (NHS England, 2021). After excluding the neutral (i.e. 'Don't know/can't remember') and not applicable answers from the calculation, the proportion of positive experience answers (i.e. 'yes, definitely') was calculated from the remaining sample for the 46 evaluative questions. The percentages of positive experiences were colour-coded by 10% segments to visually assess levels of positive experiences in Table 2. The proportion of positive experiences (i.e. the proportion of 'yes, definitely' for patients who answered more than 50% of the questions in the subsection) was also averaged across patients for each of the 14 subsections of the questionnaire.
The percentage of positive experience was compared across types of cancer, using Pearson's chi-square test (or Fisher's test if the number of events in a category was under five). Univariate logistic regressions were used to calculate unadjusted odds ratios (OR) and 95% confidence intervals (CI) of reporting a positive experience by type of cancer for each evaluative question (n = 46) and overall satisfaction. This was followed by multiple logistic regressions to evaluate the associations between type of cancer and positive experiences of care, adjusting for five major confounders for patient satisfaction reported in previous studies (Abel et al., 2014;Hargraves et al., 2001) (age, sex, health status, education and financial hardship) and for the recruiting hospital. For each logistic regression, a likelihood ratio test was performed to estimate the p-value associated with the main independent variable of interest, that is, type of cancer. Patients reporting more than one eligible cancer (n = 128) were excluded from the analyses by type of cancer as they could not be assigned to one cancer group.
The intraclass correlation coefficients obtained from mixedmodels with a random effect for each hospital were calculated for all evaluative questions. As they were all below 0.01, the effect of clustering by hospital was considered to be negligible and thus multilevel modelling not necessary. All p-values were corrected for multiple testing using the False Discovery Rate method (Benjamini & Hochberg, 1995). Complete case analysis was performed; all statistical analyses were conducted with Stata 16.1.

| Patient involvement
A Patient Partner, co-author of this paper, was involved in the research process. She took part in the study steering committee and participated in pre-testing the questionnaire, writing the patient materials sent with the questionnaire, answering patient inquiries by email during the recruitment phase, analysing the open comments, preparing and writing the lay summary of results sent to participating patients, communicating the results on social media, and disseminating the study to the scientific community.  Table 2).

| Participants' characteristics
Participants' mean age was 63.9 (standard deviation [SD] 12.8) and 61% of respondents were women. Eighty-one percent of respondents reported a first cancer, the most common cancers being breast

| Overall satisfaction and experiences of care: Global results
The overall satisfaction (Q47) was rated at a mean 8.5 (SD 1.4). The percentage of patients reporting positive experiences ranged from 36.5% (Q45) to 96.1% (Q15) (see Table 2). Over 80% of respondents reported positive experiences with timely access to specialist care (Q1), timely access to and information about diagnostic tests (Q2, Q3 and Q4), explanations about different treatments (Q9), communication with specialist nurses (Q14 and Q15), most aspects of hospital care as inpatient (Q18, Q19, Q20, Q22, Q25, Q26 and Q28), availability of documents during ambulatory care (Q30), information before the radiotherapy (Q32), GP receiving enough information (Q42) and administration of care (Q46). However, less than 60% of respondents reported positive experiences in relation to being told they could bring someone at diagnosis (Q5), receiving written information at diagnosis (Q8), being offered practical advice and support for side effects (Q11) and information about long-term side effects (Q12), information for family to help at home (Q36), about social support during and after treatment (Q37 and Q38) and financial support (Q41), and receiving a care plan (Q45). The results are graphically summarised using radars presenting the average positive experience score by subsection of the questionnaire (see overall line in Figure 1).

| Overall satisfaction and experiences of care: By type of cancer
Overall satisfaction (Q47) varied according to cancer, with patients reporting skin cancer rating their overall care the highest and patients reporting breast cancer the lowest (see Table 2). When adjusting for patients' characteristics and the hospital, individuals with prostate cancer were the least likely to being satisfied overall (see Table 3).
Experiences of care varied significantly by type of cancer for 11 evaluative questions, without being systematically more positive (or negative) in all areas of care for one type of cancer (see Table 3 and Figure 1; the details of the 95% CI of unadjusted and adjusted ORs are provided in Less positive experiences also concerned information and support on side effects during and after the treatment, especially for individuals diagnosed with colorectal and haematologic cancers. This is a frequently reported problem area in cancer care, as shown in studies in Germany in outpatient settings for instance (Kleeberg et al., 2008;Liekweg et al., 2005). The need for interventions to facilitate selfmanagement of symptoms has been previously highlighted (Howell et al., 2021) and programmes are currently being implemented in Switzerland (Bana et al., 2020). To improve the management of symptoms and side effects, these programmes should be further developed, implemented and evaluated.
Within our surveyed population, we observed that experiences of care varied among patients with different cancer diagnoses, although not consistently: better experiences were reported for different types of cancer at different times in the care pathway. As our analyses were adjusted for the main socio-demographic drivers of patient satisfaction (age, sex, health status, education and financial hardship), explanations for these patterns may be related to disease-specific factors, such as treatment burden and prognosis as suggested in previous studies, where patients with poor prognosis tend to report worse experiences of care for instance (Ayanian et al., 2010;Saunders et al., 2015). This finding suggests that improvement strategies should be tailored by type of cancer and care trajectory. These strategies should include the provision of information more easily understandable as well as emotional support for patients with diagnoses at higher risk of poorer experience. In our study, inpatient care for individuals with colorectal and lung cancer was consistently rated the lowest, suggesting that inpatient care for these patients would benefit the most from more patient-centred care responding to their specific needs. Lower ratings among colorectal patients were also often reported in previous studies (Bone et al., 2014;Clucas, 2016;Engel et al., 2018;Heerdegen et al., 2017;Sherlaw-Johnson et al., 2008).
On the other hand, patients with breast cancer tended to report more often higher levels of positive experiences, as reported in most studies (Clucas, 2016;Davidson & Mills, 2005;Heerdegen et al., 2017;Saunders et al., 2015;Sherlaw-Johnson et al., 2008), though some also reported the contrary (Arraras et al., 2013;Liekweg et al., 2005). These conflicting findings may be F I G U R E 1 Positive experience score in the 14 subsections, overall and by type of cancer. Legend: all cancers: all respondents; colorectal: respondents reporting colorectal cancer; breast: respondents reporting breast cancer; prostate: respondents reporting prostate cancer; lung: respondents reporting lung cancer; haematologic: respondents reporting haematologic cancer; skin: respondents reporting skin cancer. Positive experience scores were calculated as the proportion of positive experiences in the questions of the subsection averaged across patients.
T A B L E 3 Adjusted odds ratios (OR) of reporting a positive experience, by type of cancer to better care provided to women with breast cancer (Biganzoli et al., 2021;Carter & Nguyen, 2012). Implementation of cancer centres for other types of cancer, such as prostate and lung cancers, is more recent. This temporal lag and difference in availability of clinical practice guidelines might explain the difference regarding patient experience and warrants further investigation.

ACKNOWLEDGMENTS
Many thanks to all the patients who took the time to complete the SCAPE survey, making this study possible. We thank the teams of the oncology departments of the participating hospitals for their contribution in selecting eligible patients for the study and the administrative team who helped with receiving the envelopes and transcribing the open comments. We also thank Anne-Claude Griesser for her support during the study as member of the steering committee. Open access funding provided by Universite de Lausanne.