From community to validated measure: Development and validation of the patient-informed cancer communication scale (PICCS).

159 Background: Assessing patient-centered communication (PCC) is critical to improving quality patient-centered cancer care. While shown to be reliable and valid, most PCC measures were created by researchers, likely neglecting concerns of patients, families, and community members. PCC measures should be driven, in part, by the patient population of interest, especially given disparities in clinical communication. Our objective was to develop and validate a patient-informed PCC scale to assess cancer treatment discussions. Methods: As part of a larger study on communication and minority accrual to trials, we convened a panel of black and white cancer survivors, caregivers, and advocates. Panel members (n = 11) included 5 black and 3 white men and 1 black and 2 white women. Among them were 6 survivors and 5 caregivers. Panel members met regularly over six months to observe and discuss video-recorded treatment discussions between black and white men with prostate cancer and their physicians. Through an iterative process of generating and refining a list of physician communication behaviors they considered to be critical to PCC in a diverse patient population, they produced a list of 22 items, titled Patient-Informed Cancer Communication Scale (PICCS). We then applied the list as an observational scale to a set of video-recorded treatment discussions (n = 61) from the larger study. Trained raters applied the list and had acceptable inter-rater reliability. We used findings to determine constructs using scale development and factor analysis, then validated the scale through correlation with established scales. Results: We evaluated each item for content validity and feasibility. We divided some items that were assessing multiple attributes. The result was a 28-item scale. Using Classical Test Theory, we reduced the scale to 22 items. Using factor analysis, we identified five factors, including: 1. Treatment options (10 items a =.92); 2. Clinical relationship (6-items a =.92); 3. Prognosis and goals of treatment (2-items a =.79); 4. Explanations (2-items a =.43); and 5. Context (1-item). To validate, we correlated factors with two validated scales, one measuring physician PCC and the other patient active participation. Factor 1 was positively correlated with patient active participation ( r=.46; p=.003); Factor 2 with PCC ( r=.54, p. <.001); Factor 3 with patient active participation ( r=.48; p=.002); and Factor 5 with PCC ( r=.47, p=.002). The full PICCS scale was positively correlated with patient active participation ( r=.37, p=.02). PICCS Factor 4 was not correlated to the scales. Conclusions: This community-engaged research produced a reliable and valid patient-informed scale to assess PCC during cancer clinical interactions. Next steps include translating the findings by using PICCS to train physicians to communicate effectively in a diverse patient population.

Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy

Communicating risk and other health information in a clear, understandable, and actionable manner is critical for the prevention and control of cancer, as well as the care of affected individuals and their family members. However, the swift pace of development in communication technologies has dramatically changed the health communication landscape. This digital era presents new opportunities and challenges for cancer communication research and its impact on practice and policy. In this article, we examine the science of health communication focused on cancer and highlight important areas of research for the coming decade. Specifically, we discuss three domains in which cancer communication may occur: (a) among patients and their healthcare providers; (b) within and among families and social networks; and (c) across communities, populations, and the public more broadly. We underscore findings from the prior decade of cancer communication research, provide illustrative examples of future directions for cancer communication science, and conclude with considerations for diverse populations. Health informatics studies will be necessary to fully understand the growing and complex communication settings related to cancer: such works have the potential to change the face of information exchanges about cancer and elevate our collective discourse about this area as newer clinical and public health priorities emerge. Researchers from a wide array of specialties are interested in examining and improving cancer communication. These interdisciplinary perspectives can rapidly advance and help translate findings of cancer communication in the field of behavioral medicine.

The Nine Cancer Frames: A Tool to Facilitate Critical Reading of Cancer-Related Information

People’s ability to critically assess cancer-related information is essential from a preventional and therapeutic, as well as a general democratic perspective. Such cancer literacy is not just about acquiring factual knowledge. It also involves the ability to analyze how the information is contextualized—how cancer is framed. Previous research concerning the framing of cancer in public discourse is voluminous and penetrating but also fragmented and inaccessible to non-experts. In this study, we have developed an integrated and applicable tool for analyzing cancer discourse by systematically classifying distinctive ways of framing of the concept of cancer. Building on previous research and an inductive framing analysis of a broad range of public cancer discourse, systematically selected from British and Norwegian newspapers, we have characterized nine cancer frames: the biomedical, the environmental, the epidemiological, the personal, the sociopolitical, the economic, the antagonistic, the alternative, and the symbolic frame. This framing scheme may be applied to analyze cancer-related discourse across a plurality of themes and contexts. We also show how different frames combine to produce more complex messages, thereby revealing underlying patterns, strategies, and conflicts in cancer communication. In conclusion, this analytical tool enables critical reading of cancer-related information and may be especially useful in educational initiatives to advance health communication and public understanding of cancer.

“You told me it was too late”: An autoethnographic reflection on (not) knowing and bereavement

A parent diagnosed with terminal cancer is focused on their own struggle with life and death. They often do not have the mental capacity to think rationally about what is in the best interest of their child at this time. Without a doubt, the grieving process of a child 1who is informed about their parent’s diagnosis will have a different experience than a child who is not informed. Following on an autoethnographic approach I will revisit my past experience of my mom’s diagnosis with lung cancer and my father’s diagnosis of a cancerous tumor on his vocal cords as I share, explore, and reflect upon my involvement in both matters. These experiences will be shared along with the six stages of grief by Elisabeth Kübler-Ross and David Kessler as I provide a deeper understanding of how a child being informed or uninformed throughout the diagnosis can impact their feelings of guilt and sorrows leading up to death. Keywords: Palliative care, Cancer, Children, Parental Cancer, Communication, Relationship, Behaviour

“You told me it was too late”: An autoethnographic reflection on (not) knowing and bereavement

A parent diagnosed with terminal cancer is focused on their own struggle with life and death. They often do not have the mental capacity to think rationally about what is in the best interest of their child at this time. Without a doubt, the grieving process of a child 1who is informed about their parent’s diagnosis will have a different experience than a child who is not informed. Following on an autoethnographic approach I will revisit my past experience of my mom’s diagnosis with lung cancer and my father’s diagnosis of a cancerous tumor on his vocal cords as I share, explore, and reflect upon my involvement in both matters. These experiences will be shared along with the six stages of grief by Elisabeth Kübler-Ross and David Kessler as I provide a deeper understanding of how a child being informed or uninformed throughout the diagnosis can impact their feelings of guilt and sorrows leading up to death. Keywords: Palliative care, Cancer, Children, Parental Cancer, Communication, Relationship, Behaviour