Background
Mapping out people’s experiences with cancer: the Cancer Experience Measurement Framework
Methods
Sample and setting
Design and measures
Procedures
Analysis
Results
Interactions with healthcare systems—access and coordination of care
Domain 1: structure of the health care system
Negative impressions
“I had weekly chemo treatments (IV) & it was necessary to have a blood test the day before the treatment. I understand it had to be done, but this meant 2 visits weekly to [the cancer centre] & sometimes it was inconvenient, time-consuming -- also paying for parking twice weekly!” (Comment 59; Relevant Themes: time, setting, perceived appropriateness, availability of care)
Positive feedback
“I am very pleased with the cancer care I am receiving. The doctor and clinical team are doing an excellent job. I am already surviving for 10 years. The wait times are always acceptable, very rarely too long. The team and oncologist are very professional. I fully understand the treatment I am receiving. The pharmacist is also always very accessible and helpful. I am very grateful for my treatments. Thanks so much.” (Comment 286; Relevant Themes: time, perceived appropriateness, personnel involved, availability of care)
Areas for improvement
“[An] excellent cancer care team at [the cancer centre] (receptionists, secretaries, technologists, doctors, etc). Very compassionate and professional. Extremely competent. An area that can be improved [is] the ability to reach receptionists/secretaries to schedule appointments or get updates. Typically, I was diverted to voicemails, and sometimes my calls were not returned.” (Comment 662; Relevant Themes: time, perceived appropriateness, personnel involved, availability of care)
Domain 2: processes of care
Negative impressions
“Very trying experience…Had to wait very long for diagnosis…Oncologist very professional but gave rehearsed answers, did not understand or care about my feelings of fear and apprehension. [I] felt very much like a number. For emergencies unable to contact anyone after 4 pm or on the weekends. [As a result, I] had to wait over 17 hours in [the] emergency room!!! - Absolutely no info about alternative therapies!” (Comment 72; Relevant Themes: patient preferences, information/education, continuity/transition, coordination of care, access to care, emotional support)
Positive feedback
“I think the cancer wards/rooms are exceptional. I think the staff is kind & patient. In particular, the staff at the main reception counters. There are also volunteers to answer any questions we may have. My oncologist & pivot nurse are also exceptional - I am positive I am in the right place for treatment. No one wants or deserves this illness but having health care that [is] such great support certainly facilitates the journey…” (Comment 381; Relevant Themes: patient preference, physical comfort, emotional support, information/education, access to care, coordination of care)
Areas for improvement
“The service was very good. The staff at radiation oncology were very gentle, compassionate, punctual, respectful + polite. They explained very well if I had questions. Unfortunately, the secretaries forget to do appointments and then when you are there, they shuffle the charts, [so] you think there is one or two before you and suddenly there are 4 or 5 [other patients] before you.” (Comment 607; Relevant Themes: emotional support, physical comfort, patient preference, information/education, access to care, coordination of care)
Domain 3: health care utilization and access
Negative impressions
“Translated from French – [Called the] emergency number in oncology – does not return our calls. I had to go to the hospital emergency room.” (Comment 112; Relevant Themes: access to emergency services)“… [I] Had to wait very long for a diagnosis. Went to a private breast clinic and spent $3000 for diagnosis and biopsy and still had to wait five weeks to see [a] surgeon after a positive diagnosis with Stage III cancer…” (Comment 72; Relevant Themes: wait times, accessing private/public services, continuity/transition of care)
Areas for improvement
“Translated from French - Improve coordination between chemotherapy and radiation therapy. Ensure that appointments are well registered in the computer system and eliminate appointment errors The support staff is exceptionally courteous and respectful. The medical staff is very busy and as a result not very available…” (Comment 637; Relevant Themes: relevant refferals, access to care, coordination of care)
Domain 4: patient satisfaction with cancer care
Higher cancer care satisfaction
“Translated from French - I am very satisfied and grateful for the services received. I would recommend your institution to everyone. I appreciated the discussions about taking part in research and possibilities of experimental treatments offered in another university-affiliated cancer centre. I had a great relationship with my 3 treating doctors for 5 years. I thank you greatly for the quality of services offered. During my 2 hospitalizations, the food was excellent.” (Comment 410; Relevant Themes: patient preference, perceived appropriateness, information/education)
Lower cancer care satisfaction
“The wait time for oncologist appointments is unacceptable I've had apt @ 11:30 am and oncologist saw me @ 4:00 pm. Average wait in the past 3 years is 3 hours…Not sure why [appointment] time is given if not respected.” (Comment 127; Relevant Themes: wait times, perceived appropriateness)
Areas for improvement
“When a patient is diagnosed with cancer for the first time, the doctors don’t explain enough of the situation… they should explain more about cancer because for us it is something new and for us, it is not a daily thing that we know… I hope the system could change so [the patient] could get more information when you are diagnosed with cancer for the first time.” (Comment 79; Relevant Themes: information/education, patient preference)“Overall, I am pleased with the care I received and continue to receive. I think there are definite gaps that need to be addressed - in particular, concerning information sharing with the newly diagnosed patient + their families. Also, the doctors need to be more open about complementary + alternative medicine…Nutritionists also need to be trained to consider what is particularly useful to fight cancer. The food I received while in hospital should be banned from cancer wards/patients…” (Comment 582; Relevant Themes: patient preference, information/education)