Beyond PROs - Using narrative techniques to understand the real life of patients with COPD

BACKGROUND: The experience of living with COPD is complex and emotional [1,2]. Knowledge of illness experience is different from biological disease [3]. Traditional COPD questionnaires were based around patient-reported outcomes, but did not have enough focus on patient-reported information about the illness [4]. Narrative capture technique [5] could offer new insights. It has been applied outside of health care in anthropology, defence and development contexts. Unlike structured PROs it is accepts the patient giving information as a story, a narrative. And in narrative capture technique, the person telling the story is also the person explaining its meaning. METHOD: asking patients daily to enter stories, and to indicate the meaning of each of these stories through labeling. CONCLUSION: This narrative technique may be a feasible one for understanding how COPD fits into the patient9s overall life. References: 1. McMillan Boyles C, Hill Bailey P, Mossey S. Chronic obstructive pulmonary disease as disability: dilemma stories. Qualitative health research. 2011 Feb;21(2):187-198. 2. Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ (Clinical research ed). 2011;342. 3. Helman C. Disease versus illness in general practice. J R Coll Gen Pract. 1981 September; 31(230): 548–552. 4. Baldwin M, et al. Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond. Patient. 2011;4(1):11-7. 5. Snowden D. Naturalizing Sensemaking9 in Mosier and Fischer (eds) Informed by Knowledge: Expert Performance. 2010 pp 223-234.