Breast Cancer Survivors’ Experience of Notification of Cancer Care Delays at the Outset of the COVID-19 Pandemic: An Internet-Based Questionnaire
TimeTuesday, April 132:00pm - 2:20pm EDT
At the outset of the COVID-19 pandemic, people in the US experienced delays in healthcare. The consequences of these delays are particularly a concern for illnesses such as cancer, in need of timely intervention. Using a questionnaire developed specifically for the study purpose, we documented and characterized breast cancer survivors’ experience of communication of care and treatment delays during the initial wave of the COVID-19 pandemic. We found that 44% of respondents reported being delayed in their cancer treatment (Papautsky & Hamlish, 2020). Prevalence and characterization of specific delay types are reported in Papautsky and Hamlish (2020). Of particular focus in this proposal are notifications of delays and cancellations that took place between the healthcare system and the patient.
Data were collected using Research electronic data capture (REDCap) hosted at the University of Illinois at Chicago. We employed the National Cancer Institute definition of cancer survivor, which considers a person to be a survivor from the time of diagnosis until the end of life. We used convenience sampling to recruit adult (> 18 years old) breast cancer survivors in the US. Survey invitations were distributed via social media and email to breast cancer patient support networks.
In April, 2020, 633 respondents (1 male) completed the questionnaire. Average age of participants was 48 and average age of diagnosis was 43. Participants were 78% White and 17% Black. Top three states of residence were Illinois (15%), California (9%), and Texas (8%). More than half of respondents were receiving cancer treatment (63%) at the time of the questionnaire and had employer‐sponsored health insurance (67%); 45% received cancer care at academic medical centers (45%).
In the current proposal, we highlight findings associated with several multiple-choice questions associated with notification of delay/cancellation, described below:
1. How was the delay or interruption communicated to you?
a. Responses (n = 270) were as follows in order of prevalence: phonecall (n = 206, 76.3%), email (n = 43, 15.9%), other (n = 31, 11.5%), and face-to-face (n = 26, 9.6%), with text messages being the least frequent (n = 5, 1.9%).
2. Who contacted you regarding the delay or interruption to your care?
a. Out of 240 participants who responded to this item, only 22% (n = 53) and 24% (n = 57) reported that either a doctor or nurse/nurse practitioner/physician’s assistant, respectively, reached out to them regarding the delay. Approximately, 37% (n = 90) reported that a scheduler, doctors office, hospital, or center (or other similar response) contacted them.
3. Did you participate in the decision to delay treatment?
a. Approximately 61% (n = 164) of participants (n =270) responded with a ‘no.’
4. How do you feel about delays/interruptions to your care?
a. In n = 270 respondents, the response were as follows in the order of prevalence: I trust my doctor to make the right decisions about delays in my treatment (n =106, 39.0%); I am concerned that the delays will affect my health (n = 84, 30.9%); I prefer to delay my treatment until the pandemic is over (n = 56, 20.6%); I feel frustrated or angry about delays in my treatment (n = 24, 8.8%), and I do not understand why there are delays (n = 2, 0.7%).
5. Do you think that the delay was or will be documented in your medical record/chart?
a. Out of n = 272 respondents, approximately 57% (n = 154) responded with ‘not sure’ and 36% (n = 98) responded with a ‘yes.’
Findings suggest variability in how patients experienced notification of delays/cancellations. Although most respondents reported notification about the delay by phone, more than half received notification from an individual who was not part of their care team and not necessarily able to respond to questions specific to the patient’s care plan. A total of 61% reported that they did not participate in the decision to delay care, and a third reported concerns for their health. Findings also suggest that patients may not have sufficient knowledge about what information is represented in their medical record. It would be interesting to examine to what extent pandemic delays were represented in the medical record to allow examination of immediate and downstream outcomes. The mode and source of communication with patients may have impact on patient engagement and empowerment, and their capacity to engage in effective self-management.