Key findings
This study examined patient-reported experience of CSR in Quebec and identified individual and organizational determinants of positive patient experience. With regard to our first objective, the key finding was that patient-reported experience of CSR was largely positive, with very little variation in our sample. PAC was the least positive aspect of the patients’ care experience. Regarding the second objective, a final explicative model emerged that included six determinants of a positive CSR experience. These determinants are: self-assessed health status (good), age (70 years and over), education (lower levels), emotional well-being (good), geographic location (rural), and academic affiliation of hospital (no affiliation). From our explicative model, a predominant pattern of determinants emerged related to overall responsiveness, but different explanatory models appeared when considering responsiveness subscales. These results suggest that individual and organizational factors may have differential effects on different aspects of responsiveness, such that efforts to improve services will require multiple interrelated interventions addressing both individual and organizational dimensions. Nevertheless, good self-assessed health status, lower education levels, and receiving services in a rural location are more likely to be associated with a positive patient experience.
Our findings are consistent with related studies and reports on the quality of cancer services. Positive perceptions of CSR may be the result of improvement strategies implemented over the past decade, at both the national and local levels, to encourage a comprehensive patient-centred approach, better care coordination through the deployment of cancer nurse navigators (also called oncology pivot nurses in Quebec), and stronger interdisciplinary cancer teams [
28].
Prompt access to care (PAC) is a growing problem in many developed countries, and Quebec is no exception. In our study, PAC referred to wait times before a scheduled consultation and the patient’s capacity to reach a professional when unanticipated health problems arose outside of clinic hours, including weekends. Excessive time spent in the waiting room before a consultation has been identified elsewhere as a source of overall dissatisfaction among patients with cancer [
29]. Access to care for unanticipated health problems related to cancer may be associated with both patient characteristics and organizational attributes [
30]. Recent literature has demonstrated that, even within a publicly funded health system, access to free health services does not necessarily ensure equality of access for patients with different socioeconomic characteristics. Our results showed that male gender and self-reported good emotional well-being were associated with a more positive perception of PAC.
Our explanatory model revealed a predominant pattern of determinants for CSR, but also that the influencing factors differed depending on the responsiveness dimensions. This result suggests that patient characteristics and organizational attributes may have different effects on responsiveness dimensions. The effects are described in greater detail below.
Overall CSR is predicted by patient characteristics such as perceived self-assessed health status, age, gender, education, and emotional well-being. In this study, emotional well-being was captured using questions on emotional distress and anxiety, negative affect, and psychological adjustment to the disease. This may be an area for service improvement, since distress has been described as the sixth vital sign for cancer patients [
31]. Heightened distress has been associated with worse patient outcomes, in terms of poorer health-related quality of life, reduced adherence to treatment, decreased satisfaction with care, and possibly lower survival rates. Our study highlights the importance of planning psychosocial interventions to improve patients’ perceived emotional well-being that have the potential to influence other dimensions of their healthcare experience as well.
We identified organizational determinants of CSR. Geographic location of the cancer clinics was the most consistent organizational determinant, expressed as higher levels of CSR in rural regions. This was surprising, given the prevailing assumption that, as specialized cancer services are located in urban hospitals, cancer patients and their families in non-metropolitan regions would view services less positively due to limited accessibility of cancer care infrastructures and resources and the travel distances involved. Empirical research has demonstrated a link between rural geographic location and access inequities along the cancer trajectory, from screening to end of life or survival, but with the exception of follow-up care, for which no such link has yet been demonstrated. Lamarche et al. (2010) suggest that certain characteristics of rural settings, such as community cohesion, may have a positive influence on components of the patient care experience, particularly responsiveness [
32].
Our study revealed variations in patients’ experiences in hospitals with academic affiliations. Patients in those settings were less likely to report a positive perception of patient-centred care and overall responsiveness. There are many characteristics differentiating academic and community hospitals that may influence responsiveness. The academic mission is complicated by the large number of trainees dividing their time among clinical, academic, and research activities. It may be that these competing obligations reduce the number of person-centred practices, leading to a less positive perception among patients of professionals’ willingness to listen to their preferences and values [
33,
34].
Nevertheless, our study showed that patients receiving care from larger cancer teams with professionals from different disciplines were more likely to have a positive perception of person-centred response. Several studies have demonstrated that multidisciplinary care models are generally associated with a more positive patient experience. These teams mobilize a variety of expertise to address health and wellness needs across the continuum of cancer care and to develop interdisciplinary care plans that take into account the whole person and family in their specific circumstances. However, there is no clear consensus as yet on the appropriate number and diversity of professionals in interdisciplinary teams [
35‐
38]. Moreover, the internal functioning of interdisciplinary teams is understudied due to a lack of valid instruments to examine the greater diversity of professionals now found in teams in a variety of settings, such as the Quebec cancer teams [
39,
40]. Finally, our study showed that patients treated in academic settings were less likely to report positive overall responsiveness. Another study has also reported that cancer patients treated in non-academic settings reported higher overall satisfaction compared to patients treated in academic affiliated hospitals [
33].
Strengths and limitations of the study
To the best of our knowledge, this is the first study to specifically report on perceived CSR as a PREM, as well as on its determinants. This study is original, in that we explored explicative models of the determinants of CSR using not only overall perceived responsiveness but also each of its subscales. This approach has produced a more detailed picture of patient-reported experience. There is a distinction to be made between patients’ own reports of what actually happened (or not) and their levels of satisfaction with the healthcare system [
39,
40]. The literature highlights the difficulties of measuring patient satisfaction for use in improving patient care and rarely provides specific information that can be acted upon to achieve change. Nor are published studies reliable in capturing multiple care events and multiple interactions over time, as occurs in the cancer trajectory. Moreover, satisfaction can be influenced by a combination of elements not related to direct experience of services, such as personal expectations, perceived needs, and disease characteristics [
4,
39]. Disentangling these influences can be difficult. PREMs, such as CSR, have been developed to be easier to interpret and provide more practical results. Satisfaction measures will continue to provide one facet of the patient experience, but monitoring CSR may offer a complementary perspective on the patient experience.
This study’s originality lies also in the fact that it identified not only clinical and demographic determinants of CSR, but also included organizational attributes in the analysis models. We believe it is important to take into account the effects of specific organizational variables, because patient experience is embedded in context, which can be acted upon to improve services. It is relatively straightforward to collect a huge quantity of data on patients’ views and opinions, but this data needs to be carefully contextualized to produce information that can be useful in setting targets for improvement.
Our results clearly support the idea that improvement programs should not only focus on clinical aspects of care at the practice level, but also include strategies to overcome organizational models that compromise responsive care [
16]. Unfortunately, the current cancer system directs its resources largely toward addressing the former problems and often ignores the latter. Finally, one of the strengths of this study was the constitution of a real-world representative sample of patients in the cancer clinics in Quebec region. Given the high response rate (73.3 %) among patients and the selection of clinical settings with a variety of organizational attributes, we are reasonably confident the results of this study can be generalized to outpatients receiving care in cancer clinics with similar organizational context [
43]. The principal study limitation involves the sampling method used in the participating ambulatory cancer clinics. Despite explicit patient selection criteria and a formal recruitment scenario to limit selection bias, it is possible that hospital staff recruited patients who were more positive about their care. If so, this selection bias could have contributed to the observed high responsiveness scores. Assuming that non-participants are similar to the study population, we used data available from a national survey evaluating the quality of cancer care in Québec (
n = 9175) [
44]. We used participant characteristics (sex and mean age) to compare non-participants to participants. Age and gender distribution of both the study sample and the non-participant sample were similar with mean age being respectively 61.10 years (SD = 11.73) and 62.93 years (SD = 12.66),
t-value = 1.88,
p-value of 0.06 and gender distribution, 38.10 and 45.45 % males,
χ2 = 3.3547,
p-value of 0.07. So there was no statistical difference between both samples for these two characteristics. Given the available information from the national survey, comparisons for other characteristics were not possible suggesting that one should be cautious with the generalizability of our study findings [
45]. Additionally, considering the universal access of medical services in Quebec, our results may not be entirely applicable to other healthcare systems where access to medical services is not universal. Nevertheless, the analysis approach used and the strategies to reduce potential bias, leads us to be relatively confident in the conclusions that can be drawn from this study. Finally, our results suggest that rural location of the clinic was the most consistent organizational determinant of a positive patient perception of CSR. Since our definition of rural excluded remote regions of the province which may have different dynamics, this result should be interpreted with caution.