Comparing recalled versus experienced symptoms of breathlessness ratings: An ecological assessment study using mobile phone technology

Abstract

Background and objective: Recall of breathlessness is important for clinical care but might differ from the experienced (momentary) symptoms. This study aimed to characterize the relationship between momentary breathlessness ratings and the recall of the experience. It is hypothesized that recall is influenced by the peak (worst) and end (most recent) ratings of momentary breathlessness (peak-end rule). Methods: This study used mobile ecological momentary assessment (mEMA) for assessing breathlessness in daily life through an application installed on participants' mobile phones. Breathlessness ratings (0-10 numerical rating scale) were recorded throughout the day and recalled each night and at the end of the week. Analyses were performed using regular and mixed linear regression. Results: Eighty-four people participated. Their mean age was 64.4 years, 60% were female and 98% had modified Medical Research Council (mMRC) ≥ 1. The mean number of momentary ratings of breathlessness provided was 7.7 ratings/participant/ day. Recalled breathlessness was associated with the mean, peak and end values of the day. The mean was most closely associated with the daily recall. Associations were strong for weekly values: peak breathlessness (beta = 0.95, r 2 = 0.57); mean (beta = 0.91, r 2 = 0.53); and end (beta = 0.67, r 2 = 0.48); p < 0.001 for all. Multivariate analysis showed that peak breathlessness had the strongest influence on the breathlessness recalled at the end of the week. Conclusion: Over 1 week, recalled breathlessness is most strongly influenced by the peak breathlessness; over 1 day, it is mean breathlessness that participants most readily recalled.

Contemporary Concise Review 2022: Chronic obstructive pulmonary disease

“…Understanding what our measurements tell us is often more complex that we imagine. Sandberg el al studied 84 people who were monitored for breathlessness at home and the data were compared to the severity of symptoms they recalled 38 . Over 24 h, recall of breathlessness most strongly related to mean daily level but a week later peak breathlessness was recalled.…”

Tests to uncover and assess breathlessness: a proposed framework

“…First, such ratings most often ask the person to recall symptoms during a time period (such as the last 24 h). Recalled symptoms are influence by multiple factors, such as cognition, memory, peak, and recent symptom levels (’peak-end-rule’) [ 7 ], setting, and circumstances and can differ substantially from actual experienced ratings during the same period [ 8 ▪▪ ]. Second, the symptom report is affected (confounded) by the level of physical activity.…”

“…Thus, ratings of breathlessness at rest or using a questionnaire of breathlessness ‘in daily life’ are likely to markedly under-estimate the presence of the symptom (‘hidden breathlessness’) [ 10 ] and its severity (due to adapted and reduced physical activity) [ 11 , 12 ]. In addition, symptom recall (using a question or questionnaire) is affected by multiple factors and may differ substantially from the actually experienced breathlessness [ 8 ▪▪ , 13 ]. For valid measurement, activity-related breathlessness should be quantified at a standardized level of exercise using a test [ 12 , 14 ].…”

Breathlessness: Remembering the worst of it

“…6 In a recent publication in Respirology, Sandberg and colleagues report the results of the Relating Experienced to Recalled Breathlessness Observational (RETRO) study, which investigates the relationship between recalled breathlessness and the immediate experience of this symptom. 7 Participants with self-reported breathlessness (79% asthma or chronic obstructive pulmonary disease, and 98% with mMRC ≥ 1) were prompted by a smart phone application to rate the intensity of their breathlessness once each waking hour for 7 days, using a numerical rating scale (providing a measure of momentary breathlessness, reflecting the immediate experience). Breathlessness was also rated on the same scale each evening and at the end of the 1-week study period, providing a recalled measure of breathlessness intensity for each day and the entire week.…”

“…Recalled breathlessness is discussed in countless daily conversations between patients and healthcare professionals. The RETRO study 7 provides new insights and, importantly, highlights persistent gaps in our knowledge of this concept that is central to patient care. Limitations to the current study include a focus on the intensity of breathlessness, with no information on sensory qualities or affective distress (unpleasantness, fear and anxiety), which will be important for understanding patient impacts.…”