“Emotional Support” represents the highest area of patient dissatisfaction across provinces in 2011-2013.
What are we measuring?
This indicator examines comparative patient satisfaction scores from five provinces that have implemented the Ambulatory Oncology Patient Satisfaction Survey developed and maintained by the National Research Corporation Canada and that consented to providing data for inclusion in this report.
Ensuring that patients with cancer feel they are well supported and cared for throughout their cancer care journey is a crucial requirement of a high-quality cancer control system.1,2
The Ambulatory Oncology Patient Satisfaction Survey (AOPSS) was launched in 2002 and has been employed by a number of provinces in Canada. The retrospective survey is used to assess the patient experience among those who received cancer care services at participating cancer centres or hospitals, usually in the last three to six months. While there are variations among provinces in the timing and frequency of the survey application and in the inclusion criteria for determining the patient survey sample, the AOPSS is currently the only standardized tool for assessing overall cancer patient experience that is in use in multiple provinces.
The AOPSS survey results are organized into several dimensions of the patient experience. Previous system performance reports have shown overall provincial satisfaction results by dimension of care and provincial results by sub-dimensions/characteristics of care within the co-ordination and continuity of care, emotional support and physical comfort dimensions. This report provides more detailed results by each dimension of the patient experience, including the primary type of cancer, first-time versus repeat cancer diagnosis, time elapsed since diagnosis, rating of overall health status and socio-demographic variables (educational attainment, sex and age group). Examining results by these variables will make it easier to assess whether there are any patterns in patient satisfaction that may help inform quality improvement initiatives.
To more clearly identify the areas of opportunity for improving patient experience and to better focus on those areas, the indicators present the negative rating as opposed to the positive rating or satisfaction rates. The rationale for examining negative ratings is that doing so promotes focus on the areas where most improvement may be warranted. The negative rating is derived from a mapping of the survey’s multiple-choice answers to a “negative” category (as opposed to “neutral” and “positive” categories).
What are the results?
There was some variation in the way patients from different provinces rated their experience with the dimensions of care covered in the survey. Among all dimensions covered in the survey, emotional support received the strongest negative rating in all reporting provinces, ranging from 19.4% in Nova Scotia to 30.7% in Saskatchewan (Figure 5.2). For most provinces, co-ordination and continuity of care and physical comfort received the weakest negative rating (or in other words, the most positive rating) among all dimensions of care. All provinces reported a relatively weakly negative rating on overall quality of care of less than 1.4%.
A detailed analysis by socio-demographic and disease and health status factors was examined across all dimensions of care. However, because the emotional support dimension was identified as the area in which most improvement was needed, it is the focus of the results below.
Satisfaction was not significantly related to age or sex in the emotional support dimension of care, with the youngest age group (less than 50 years) reporting slightly stronger negative ratings (Figure 5.3). Similar results were reported in a study using a different tool: younger cancer patients agreed and disagreed with the following statements, respectively, more strongly than older patients: “the doctor was too business-like and impersonal” and “the doctor I saw seemed sympathetic.”3Women were somewhat more likely than men to report bigger gaps in care in the emotional support dimension. Patients with strong emotional supports not only from their family and caregivers but also from the attending physician have better psychological adjustment to their cancer diagnosis in the short and long term.4,5
Figure 5.3 shows that educational attainment and satisfaction scores were moderately correlated in the emotional support dimension, with more education correlating with a perception that more improvement was needed. A stronger negative response rate in better-educated patients may reflect the extent to which their health-care experiences match their expectations with respect to quality of care received, as shown by previous studies.6,7
There is variation in how patients reported their experiences based on self-reported health status at the time of the survey. Survey scores varied with the negative response rate, ranging from 32.7% for those who reported poor health to 21.3% for those who rated their health as excellent (Figure 5.3). Poorer perceived health may negatively affect one’s view of the health-care system; this suggests that one’s self-report of quality of life influences the degree to which one is satisfied with one’s cancer care.
The reason for treatment, be it a first-time cancer diagnosis or a repeat cancer diagnosis, did not significantly affect patient satisfaction. Compared with cancer patients re-entering the cancer system, people entering the system for the first time reported slightly smaller gaps in care for emotional support (Figure 5.3).
Patients with gynecologic cancers (cervical, uterine or ovarian cancer) overwhelmingly reported negative rating scores in the emotional support dimensions of care compared with other disease sites (Figure 5.3). Negative ratings for emotional support by disease group ranged from 31.0% of women with gynecologic cancers to 19.8% of men with prostate or testicular cancer. Of women with breast cancer, 22.6% were dissatisfied with the emotional support they received. When disease site–specific populations evaluated their experience of emotional support in Ontario, over 70% of men with prostate or testicular cancer reported receiving information on changes related to sexual activity, while only 53% of women with gynecologic cancer say they received such information.8 In the Quality Initiative of the Program in Evidence-Based Care, the Models of Care for Cancer Survivorship report concluded that more research is required to build on models of follow-up care for women with various types of cancer, because the current evidence beyond women with breast cancer is limited.9
Patients who were diagnosed with cancer more than five years before the survey were slightly more likely to score emotional support as needing improvement than were patients who were diagnosed more recently (Figure 5.3).
What do the results mean?
Among all the dimensions covered by the AOPSS, patients’ negative rating of their experience was strongest for the emotional support dimension. A lack of access to supportive care services can add to cancer patients’ distress and can compromise their ability to adjust to changes brought about by cancer.10 The obvious prominence of emotional support as the domain of lowest patient satisfaction clearly points to where the greatest opportunities for improvement are. Opportunities arising from the breakdown of the results into socio-demographic and disease and health status categories are not as clear. Ascertaining which patterns reflect mutable aspects of the patient experience can therefore inform quality improvement initiatives and is a key follow-up step to this analysis.
It appears that socio-demographic factors do not play a major role in determining a patient’s rating of emotional support. Nonetheless, emotional support scores are lower than scores for other dimensions of care and require closer examination. It will be important to examine the individual questions within the emotional support dimension because previous analyses have shown that there is great variation in scores in this dimension.11
Institute of Medicine. Cancer care for the whole patient: meeting psychosocial health needs. Washington, DC: National Academies Press; 2008.
Jacobsen PB, Shibata D, Siegel EM, Lee JH, Alemany CA, Brown R, et al. Initial evaluation of quality indicators for psychosocial care of adults with cancer. Cancer Control. 2009;16:328-34.
Shilling V, Jenkins V, Fallowfield L. Factors affecting patient and clinician satisfaction with the clinical consultation: can communication skills training for clinicians improve satisfaction? Psychooncology. 2003;12:599-611.
Roberts CS, Cox CE, Reintgen DS, Baile WF, Gibertini M. Influence of physician communication on newly diagnosed breast patients’ psychologic adjustment and decision-making. Cancer. 1994;74:336-41.
Mager WM, Andrykowski MA. Communication in the cancer ‘bad news’ consultation: patient perceptions and psychological adjustment. Psychooncology. 2002;11:35-46.
Bredart A, Coens C, Aaronson N, Chie WC, Efficace F, Conroy T, et al. Determinants of patient satisfaction in oncology settings from European and Asian countries: preliminary results based on the EORTC IN-PATSAT32 questionnaire. Eur J Cancer. 2007;43:323-30.
Defossez G, Mathoulin-Pelissier S, Ingrand I, Gasquet I, Sifer-Riviere L, Ingrand P, et al. Satisfaction with care among patients with non-metastatic breast cancer: development and first steps of validation of the REPERES-60 questionnaire. BMC Cancer. 2007;7:129.
Definition: NRC AOPSS Survey (self-reported data); see inclusion/exclusion criteria below – provincial % Negative rating, summary indicator for the dimensions surveyed: Access to Care, Coordination and Continuity of Care, Emotional Support Information, Communication & Education, Physical Comfort, Respect for Patient Preferences, Overall Quality of Care
Data source: Reported by provincial cancer agencies or equivalent to the Canadian Partnership Against Cancer
Patient satisfaction – emotional support dimension
Definition: NRC Picker AOPSS Survey (self-reported data) – provincial % negative rating for the 7 stratifications for emotional support:
By site (Breast, Cervix/Uterine/Ovarian, Colorectal/Bowel, Lung and Prostate/testicular)
Reason for Treatment (first time cancer diagnosis, repeat cancer diagnosis)
Time since Diagnosis (less than 6 months ago, between 6-12 months ago, between 1 and 2 years ago, between 2 to 5 years ago and more than 5 years ago)
Education (< Sec. School, Sec. School Grad and Post-Sec. Grad)
Health Status (Poor, Fair, Good, Very Good and Excellent)
Sex (Female and Male)
Age (<50, 50-74 and 75+)
Data source: Reported by provincial cancer agencies or equivalent to the Canadian Partnership Against Cancer Measurement timeframe: AB: Feb-Aug 2012 MB: Jun-Oct 2011 NS: Jun-Sept 2012 PE: Nov 2012-Jan 2013 SK: Apr-Jun 2011
National Research Corporation Canada
Ambulatory Oncology Patient Satisfaction Survey
Inclusion and Exclusion Criteria
Patients less than 18 years of age (based on date of birth at time of data extraction for surveying)
Patients with no known fixed address
Patients who do not have a confirmed cancer diagnosis (even if they have received treatment in the facility) including in-situ, benign haematology and/or non-malignant cancers (for example myeloproliferative diseases) or those going through a diagnostic assessment process
Patients who received only inpatient services
Patients who have notified the hospital that they wish to be excluded from mailing list.
Patients who have received active treatment in an ambulatory setting in the past 3 months
Patients with a confirmed diagnosis of Cancer (include those patients with diseases identified as invasive, with a 3 in the 5th position of the ICD-O-3 histology code (malignant, primary site)
Have undergone active outpatient treatment in the past 3 months
Are 18 years or older (based on date of birth at time of data extraction for surveying)
The table below highlights where sampling criteria for jurisdictions varies from the criteria outlined above.
Deviations from the standard Inclusion/Exclusion criteria
Data elements in addition to those required as per NRC Implementation Manual
Those who have been on treatment for six months.
Can identify patients who received chemotherapy and radiation treatments however surgery is not captured until approximately a year after diagnosis so the vast majority of patients will not have surgical information.
Will identify patients who received IV and/or oral chemotherapy at the tertiary centres. However at the Associate and Community cancer centres, are unable to determine the type of systemic treatment received. This will result in the inclusion of patients who received hormones and immunotherapy as well as those who received chemotherapy.
Alberta will use the ICD code for invasive cancer as used by the other provinces.
Will use age at diagnosis as prescribed on the Implementation Manual.
Nova ScotiaSurveyed Point in TimeSummer 2012
Exclude in-situ bladder.
There is a flag set on each case where ‘ambiguous’ terms appear on the pathology report. The histology could still be classified as /3 (invasive), but if this flag were set, the patient would not be approached.
Oral Chemotherapy patients:
There is a problem in identifying these patients. They are not specifically included or excluded. Due to limitations in the IT system, an algorithm has been developed for selecting patients that are most likely to be receiving chemotherapy based on visits to medical oncologists so oral chemotherapy patients could be part of that algorithm. Certainly oral chemotherapy is increasing and they may have different issues or not identify themselves as chemotherapy patients in the survey.
SaskatchewanSample point in time every 1 – 2 years
Patients who are on injections (determined by a comprehensive drug master list from Care Services)
Patients who have restrictions in Ceres/Eureka/CMS
Patients with specific chemo/radiation events
Patients who have a specific COPS institution as a scheduled event
Haematology patients (as there is no way currently to exclude those patients)
Have undergone active outpatient treatment in the past six months.
Oral Chemotherapy patients:
Oral chemotherapy patients included in sample size. Patients not receiving IV chemotherapy are not excluded from the serious side effects and care that they should receive and expect during their cancer care service. Many cancer patients are on oral chemotherapy, such as the brain, GI, pancreatic cancer patients that require the same information, education, support, follow up and side effects management as do the IV chemotherapy patients.
As per criteria above.
Prince Edward Island
As per criteria above.
Data and measurement considerations
While the provincial surveys used to produce the patient satisfaction results are all based on the AOPSS tool, inclusion criteria for patients may vary among provinces. As well, the results presented in this report are based on the latest surveys conducted in each province, but the years the surveys were conducted vary among provinces (from 2011 to 2013). While progress has been made, work is still needed to ensure that inclusion and exclusion criteria are consistent across all hospitals and jurisdictions to allow results to be compared within and among jurisdictions. Any deviation from these criteria are identified above and should be considered when interpreting results.
In Nova Scotia, Manitoba and Prince Edward Island, surveyed patients had received disease-oriented treatment within three months of the survey period, whereas in Alberta and Saskatchewan, patients had had treatment within six months of the survey.
The survey consistently captures data on patients receiving radiation treatment, but chemotherapy treatment data collection may vary by province (e.g., whether patients receiving oral chemotherapy alone were included rather than only those receiving intravenous chemotherapy).
It is important to be cautious when interpreting results in this section given that individuals may not have recalled all facets of care that took place when they received disease-oriented treatment three to six months earlier.
Level of implementation of standardized screening for distress tools, by province — 2015
Province-wide implementation (provinciallycoordinated and centrally reported)
Partial implementation(provincially coordinated)
Not provincially coordinated(some local use possible)
Prince Edward Island
Newfoundland & Labrador
Table reflects the level of standardized screening for distress across the country. It does not reflect the number of cancer patients actually screened for distress or the proportion of patients screened in each province.
Data source: Provincial cancer agencies and programs.