As of February 2018, there were more than 14 million new cases of cancer reported, making it the second leading cause of death, globally. Estimates project these numbers to rise by 70% in the next few decades.1
However, technological developments in diagnostic and treatment methods have vastly improved, over the years, in favor of the survival of cancer patients.3 Although, with such a large disease population (mostly seniors), concerns regarding the standard of care, amid the complex healthcare system, have arisen. They are not only posing challenges to caregivers, clinicians, and policymakers, but also the cancer patients themselves suffering from pain and devastation.2, 3
An interesting finding, as part of a study, revealed that 38% of patients, in general, were not able to speak to their nurses about a problem, and 10% of cases felt ashamed in the front of their doctors.7
With respect to debilitating conditions such as cancer, poor treatment and management could cause functional abnormalities and deter quality-of-life of individuals, and often, at the cost of cancer survivorship.9
A glance at the fundamental principle of the American Medical Association states, “A physician shall be dedicated to providing competent medical care, with compassion and respect for human dignity and rights.”2
Thus, the increased need to provide optimal and compassionate care to individuals with cancer has given way to an important tool for doing so — patient experiences.
Defining Patient-Reported Experiences
Definitions of patient experiences (PX) vary among researchers across disciplines. Some studies refer to it as a specific measurement of care bestowed.4 Others believe it is attention from a patient’s perspective,5 while certain researchers call it the sum of all interactions across a continuum of care.6
One study found that the term comprises of “any process observable by patients” — subjective experiences such as pain management, objective experiences like waiting periods, and behavioral trends of hospital staff and healthcare providers (HCPs).5
Another aspect of the research also differentiated the PX from satisfaction ratings as the latter was meant for specific care experiences only.5 Authors from a paper published in Patient Experience Journal expressly cast aside factors such as patient satisfaction, and instead classified patient experiences as one of individualized attention and tailoring needs to meet patients’ requirements.4
However, the fundamental premise of patient experiences still emphasizes and warrants a well-rounded, high-quality care and treatment plan from a patient’s point-of-view, whether these individuals are young, old or in palliative care.
Provisions for Care Derived from Patient Experiences
For several years now, the National Cancer Patient Experience Survey has been doing a phenomenal job. The staff is improving the nature of patient-centered experiences by empowering the cancer community and applying feedback to real-world scenarios, accordingly.7
A paper by Mollica, M. A. et al., published in 2017, identified gaps — like the requirement for a “population-based research” — and examined factors associated with cancer patients and the care they received. A data resource called SEER-CAHPS (cancer registry and Medicare-beneficiary survey, respectively) was suggested as a means to address these issues.3
Although quickly evolving, from a patient’s standpoint, certain factors such as high-quality communication, meaningful involvement, and coordinated care were considered “good” experiences. If individuals felt well-looked-after, it, in turn, promoted feelings of self-respect that was a precursor to other key health outcomes. Rendering poor patient experiences can be considered as markers for other shortcomings.7
Better care for convalescents has been proven to be associated with consistency in treatment options, clinical outcomes, hospitalizations, and costs. These measurements were taken using psychometrically sound equipment and standard protocols, as it should be.5
Similarly, from studies conducted in Canada, it was noted that patients wanted a good level of communication between their HCPs and believed that this could benefit the continuity of cancer care. The investigation asserted that the way forward was to develop futuristic approaches towards an enhanced continuity of cancer care.8
Another potential solution was found in formal patient-reported outcomes (PROs) that concentrated on the illnesses of the patient, along with the impact on families. Research showed that PROs proved useful both at the individual- and population levels in terms of monitoring symptoms and quality improvement initiatives, respectively. Though, its implementation into the existing clinical flow system could pose some barriers.9
The weight of creating patient-centered processes has definitely shifted in such a way that experts in the field are innovating and reassessing current medical and health programs. But it is yet to be seen how all these analytics and data can be integrated, in order to ensure comprehensive quality care for oncology patients.
- Cancer. World Health Organization. http://www.who.int/mediacentre/factsheets/fs297/en/. Accessed April 6, 2018.
- Compassion: a scoping review of the healthcare literature. BMC Palliative Care. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0080-0. Accessed April 6, 2018.
- Patient experiences of cancer care: scoping review, future directions, and introduction of a new data resource: Surveillance Epidemiology and End Results-Consumer Assessment of Healthcare Providers and Systems. Patient Experience Journal. http://pxjournal.org/cgi/viewcontent.cgi?article=1167&context=journal. Accessed April 6, 2018.
- Defining patient experience. Patient Experience Journal. http://pxjournal.org/journal/vol1/iss1/3/. Accessed April 6, 2018.
- Examining the Role of Patient Experience Surveys in Measuring Health Care Quality. Med Care Res Rev. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4349195/pdf/nihms654075.pdf. Accessed April 6, 2018.
- Defining Patient Experience. The Beryl Institute. http://www.theberylinstitute.org/?page=DefiningPatientExp. April 6, 2018.
- Improving Care for People with Cancer. https://www.macmillan.org.uk/documents/getinvolved/campaigns/patient-experience/improving-care-for-people-with-cancer.pdf. Accessed April 7, 2018.
- Patients’ Experiences with Continuity of Cancer Care in Canada. Cancer Family Physician. http://www.cfp.ca/content/62/10/821.long. Accessed April 7, 2018.
- Improving Cancer Care Through the Patient Experience: How to Use Patient-Reported Outcomes in Clinical Practice. American Society of Clinical Oncology Education Book. https://meetinglibrary.asco.org/record/138061/edbook. Accessed April 7, 2018.