Playing the numbers: how hepatitis C patients create meaning and make healthcare decisions from medical test results

Abstract

In this article we describe how patients assign meanings to medical test results and use these meanings to justify their actions. Evidence is presented from lay interpretations of medical tests for monitoring hepatitis C viral infection (HCV) to show how numeracy becomes embodied in the absence of physical symptoms. Illness narratives from 307 individuals infected with HCV were collected from the internet and analysed qualitatively. As part of standard medical care, chronically infected HCV patients are required to have periodic blood tests for laboratory testing. The lab results are presented numerically and compared with established physiological standards. HCV patients' knowledge and interpretations of test results have important consequences for their health behaviour and their medical decisions. In their stories, the patients described their decisions to begin, delay or stop treatment and developed strategies to alter their diet, exercise and use alternative therapies according to changes in their test result. The perceived meanings of test results are powerful signifiers that are capable of altering the course of HCV patients' illness, lives and stories. An interpretive model of health numeracy has the advantage of promoting understanding between patients and healthcare providers over a model that views innumeracy as a skill deficit.

The Lived Experience of Inequalities in the Provision of Treatment for Hepatitis C

“…Further to this, as a concerned patient, my interpretation of test results likely differed from the clinician's abstracted perspective (Shapiro, 2008). For me, the numbers took on a symbolic currency as they fluctuated (Perzynski et al, 2013), leaving me alarmed when the numbers rose too high, and confused when they inexplicably dropped closer to normal, with no apparent reason for this change. Despite these undulating shifts in the data, the underlying tendency was a slide down the scale of health until my awareness of diminishing time indicated the need for action.…”

“…The decision I made was shaped by the knowledge that my liver disease would deteriorate and that if I left it too long, the cure might be less effective as my liver became increasingly damaged. However, the process of risk assessment and deliberation that led to my decision was accompanied by uncertainty and ambivalence (Perzynski et al, 2013) because I was acting without the direct authority of my clinician. Using a Buyers Club can create anxiety; the individual is acting as a consumer, yet public health messages encourage the avoidance of risky behaviour and adherence to healthcare advice.…”

Calendars: Time Coordination and Overview in Families and Beyond

“…However, the home offers a more open framework for practicing care with more possibilities for care recipients to decide for themselves. In a study of patients with hepatitis C Perzynski et al (2012) observed that 'in their stories, the patients described their decisions to begin, delay or stop treatment and developed strategies to alter their diet, exercise and use alternative therapies according to changes in their test result' (ibid, p. 1). Decisions on the use of resources are in the hands of care recipients and their families, as is the responsibility to find those resources.…”