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Patients with cancer used numerical information to calculate the odds and mobilise their coping responses
  1. Karen Moore Schaefer, RN, PhD
  1. Temple University, Philadelphia, Pennsylvania, USA

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 Q How do patients with cancer experience the communication of numerical information in their health care?

    DESIGN

    Interpretive description.

    SETTING

    Vancouver, British Columbia, Canada.

    PARTICIPANTS

    200 patients (45% ⩾60 y of age, 74% women) who had cancer of the breast (50%), prostate (14%), gastrointestinal system (10%), head and neck (5%), cervix/uterus/ovary (5%), or other site (6%) or had lymphoma or leukaemia (7%).

    METHODS

    Patients’ views were elicited through individual interviews, focus groups, and written accounts. Interviews and focus groups were audiotaped, transcribed, and analysed for themes.

    MAIN FINDINGS

    (1) What are my chances?The context of numerical information in coping with cancer. Patients used numbers in various ways as they grappled with the meaning of the disease in their lives. They preferred to be well informed, which usually meant knowing facts about the disease. They associated this with having power, choice, or control. Calculating the odds. Patients usually associated the chances of something occurring with the appropriateness of an optimistic or hopeful attitude about it. Their expressions of frequencies and statistical concepts ranged from vague and imprecise statements to complex and sophisticated articulation about what the numbers meant. Playing the odds. Patients actively manipulated the odds towards or away from certain anticipated outcomes. Many used optimistic reframing to present probability information in a favourable light. They also held convictions about the role of belief, attitude, or luck in relation to the odds (eg, “beating the odds”). They compared odds estimates from different sources. Sometimes these estimates varied considerably, leading some patients to theorise about how profit motives or political agendas may shape the publication of study results. Against the odds. Numerical information became a reference point against which patients envisioned more optimistic possibilities (ie, living longer than expected). Patients also collected examples of actual or fictional cases of people for whom the predicted outcome had not happened (eg, patients who remained well for much longer than the predicted remission time line). They often intentionally “discounted” negative odds to enhance their coping and emotional stability, or they distanced themselves by saying “these are only numbers.” (2) What can I tell you? Negotiating a balance between hope and honesty in numerical form. Many patients used statistical information to help make sense of the uncertainties, manipulate emotions about the possibilities, decide which emotions would dominate, come to terms with uncertainties, and find a basis for hope. Informing patients. Patients understood that clinicians were professionally obliged to provide certain types of information. They found it difficult to absorb negative information and observed that clinicians were uncomfortable imparting this information. Steering decision making. Patients felt that clinicians used numerical information strategically to steer their decision making. Sometimes numerical information was provided in such a way that options were reduced and a hierarchy of authority was created. Patients were able to learn that use of population-based data to predict outcomes for a particular patient was limited. Managing hope. Patients also felt that clinicians used numerical information to prevent or control unrealistic expectations, particularly if hope was perceived to be excessive. (3) What does it mean? The uses and abuses of numbers. Numerical information could become a source of contention within cancer care communications because of discrepant expectations of patients and providers. Patients tried to balance realism and hopefulness; thus, their relation to numerical information shifted throughout the disease course. Many patients felt that overuse or abuse of numbers was related to inadequate communication skills of clinicians who relied on statistics rather than paying attention to the individuality of the patient. (4) What can I tell you? The power of communication. Some patients described the types of communication they found to be the most helpful and comforting. Clinicians who enabled them to place frightening numerical information in perspective and who did not stamp out hope were considered most helpful.

    CONCLUSIONS

    Patients with cancer used numerical information to orient themselves, calculate their odds, and mobilise their coping responses. They found it most helpful when clinicians offered some hope, even though numerical information about their disease might be negative.

    Commentary

    The goal in health care is to achieve a balance of hope that sustains individuals through tough times. Trying to balance hope with the risks and benefits associated with the chance of cure can be overwhelming. The study by Thorne et al provides insight into how clients with cancer use numerical data to frame hope. This study provided a glimpse of how data were communicated and how clients interpreted data and constructed meaning within their own unique contexts. This understanding can influence how primary care providers frame the communication of difficult information.

    Other research has found that clients with cancer question how a single number can place them at risk and therefore determine whether or not they are candidates for a clinical trial.1 Physicians often do not “do emotional;” numerical data are presented, and meaning is not addressed from the patient’s perspective. Healthcare providers need to present data in context and know that patients will seek out their own resources when trying to understand the data. It is important to keep conversations open and encourage patients to discuss their thoughts—even with the accompanying uncertainty associated with numerical data.

    What still needs to be determined is how a client’s life, given the “perception odds,” affects treatment outcome, and which ways of presenting numerical data lead patients to suspect that care providers are using data to sway their decision making. Whether through research or reflection on individual encounters, nurses also need to learn more about what information is disclosed and how the information is delivered to patients.

    The nurse’s role as a patient advocate is essential. This study suggests that nurses can continue to support full disclosure, know that the odds will be personalised as positive or negative, help clients to locate information, encourage second opinions, encourage clients to seek personal support, and be available to really listen to and assist clients in sorting through information during the decision making process.

    View Abstract

    Footnotes

    • For correspondence: Dr S Thorne, School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada. thorne{at}nursing.ubc.ca

    • Source of funding: National Cancer Institute of Canada.

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