“I just know”: exploring self-knowledge in chronic obstructive pulmonary disease

Abstract

The importance of lay knowledge in health care settings, particularly in relation to long-term conditions, has received increasing attention over the past few decades. However, there remains some way to go before patients' experiential or self-knowledge forms part of current clinical decision making and care provision. Chronic obstructive pulmonary disease (COPD) is a chronic respiratory condition which affects people on a daily basis. People living with this condition develop experiential knowledge about their symptoms and are, arguably, best placed to assess these and treat any acute worsening of their condition accordingly. Here we explore how people with COPD articulate their knowledge and make sense of it within the context of their everyday lives. We re-analysed data from a qualitative interview-based study with 44 participants living with moderate to severe COPD using a grounded theory approach. We found that participants focused their attention on symptoms and sensations of the chest while developing an embodied self-awareness that allowed them to assess whether they were experiencing an acute worsening of their condition. Participants appeared confident in using this self-knowledge to distinguish such acute flare ups from the daily variability of their condition, described as good days and bad days.We suggest that people with COPD are very attuned to their bodies despite the vagueness and sometimes seemingly unrelated nature of their symptoms and signs. We argue that selfknowledge should be acknowledged as valid and meaningful by both patients and clinicians. This is particularly important because of the clinical uncertainty about the precise onset and presentation of acute exacerbations in COPD.

Psychometric validation of a patient-reported single-item assessment of ‘Good Day Bad Day’ in a neurogenic orthostatic hypotension population treated with droxidopa

“…In patients with AD, reports of a good or bad day (as noted in health records based on patient and caregiver descriptions) were qualitatively associated with cognitive state, functional ability, and mood (ie, good days were associated with more positive features and bad days with more negative features)[ 18 ]. Another qualitative study examining reports of good and bad days in patients with chronic obstructive pulmonary disease found that they were attuned to their symptoms and could chronicle their good and bad days within the context of their own lives[ 19 ]. These findings reinforce the relationship of patient perception of good/bad days with severity and impact of symptoms and underscore the importance of the development and validation of our novel Good Day Bad Day single-item assessment for evaluation of nOH.…”