Patient Perspectives on Risk of Infection and Neutropenia: What Counts?.

Background: Neutropenia is a common and dangerous side effect of chemotherapy, especially for older adults with hematologic malignancies. The absolute neutrophil count (ANC) is an important factor for clinicians when making management decisions, especially regarding risk of infection. However, patients’ perspectives of this risk and their behavioral responses remain poorly understood. Better insight into patients’ perspectives and experiences is necessary for determining patient factors that affect neutropenia management and outcomes. This study explores the experience of neutropenia for older adults during their first cycle of chemotherapy for non-Hodgkin’s lymphoma (NHL). Methods: The study followed a prospective longitudinal design. Five adults aged 57 to 71 years with NHL and no previous history of neutropenia participated in weekly semi-structured audiotaped interviews during their first cycle of standard R-CHOP chemotherapy: day 1, day +7 to 10, day +14 to 17 and day 21. Information from clinical records (e.g. ANC) and field notes from 37 observations of clinical situations (e.g. chemotherapy teaching) provided data to better understand contextual factors and their relationship to the patient experience. All data were transcribed and analyzed using constant comparative analysis to inductively generate a description and explanation of the patient experience of neutropenia. Results: Risk of infection, conveyed during chemotherapy teaching as “susceptibility to infection,” was a prominent concern for patients. It heavily influenced patient decisions regarding behaviors and activities during the first cycle of R-CHOP. Patients derived knowledge about “susceptibility to infection” from personal experience and the media in addition to teaching from clinicians. “Susceptibility to infection” made patients fearful and they worried about getting “sick.” They responded by constructing plans to protect themselves against this possibility with behavior modifications involving diet, hygiene, family contacts, and social and physical activity that diverged from neutropenic precautions teaching they had received. All patients implemented behavior modifications according to a subjective index of susceptibility, not in response to information from clinicians about nadir cell counts. No patients in this study developed grade 3 or 4 neutropenia after their first cycle of chemotherapy, yet all implemented behavior modifications. All participants intended to apply this strategy during remaining cycles of treatment. Conclusions: Patients’ concerns and their behavioral responses to the notion of susceptibility to infection suggest that neutropenia affects their lives before the ANC falls and even when the ANC does not approach common definitions of neutropenia. Future studies aimed at advancing clinical management of neutropenia should be open to the possibility that patient perspectives might differ from those of clinicians. The finding that patients’ subjective index of susceptibility influenced their decision making more than information from clinicians about the ANC warrants closer examination. Further investigation of how patients’ perspectives and decision making evolve over multiple cycles of treatment and for those with varying grades of neutropenia and/or febrile neutropenia is also warranted.