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

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, r2= 0.57); mean (beta=0.91, r2= 0.53); and end (beta=0.67, r2= 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

Relating Experienced To Recalled breathlessness Observational (RETRO) study: a prospective study using a mobile phone application

Background: Breathlessness, the subjective sensation of breathing discomfort, is common and appears in the daily life of people with cardiorespiratory diseases. Physicians often rely on patient's history based on symptom recall. The relation between recalled and experienced breathlessness is still poorly understood. This paper presents the protocol for a study primarily aimed at evaluating the relationship between experienced breathlessness and (1) recalled breathlessness and (2) predicted future breathlessness. Methods: A mobile phone application will be used to collect data during daily life. Medically stable participants, >= 18 years of age with mean daily breathlessness of Numerical Rating Scale (NRS) 3/10 and able to use a mobile phone with internet will rate their breathlessness intensity on a 0-10 NRS prompted the user several times daily for 1 week. Participants will recall their breathlessness each day and week. Multivariable random effects regression models will be used for statistical analyses. Results: Results of the study will be submitted for publication in peer-reviewed journals and presented at relevant conferences. Discussion: This protocol describes a study aimed at investigating previously unknown areas of the experience and recall of breathlessness using a new method of data collection.Scientific Committee of Blekinge County Council; Swedish Society of Medicine; Swedish Respiratory Society; Swedish Heart-Lung Foundation; Wera and Emil Cornell Foundation; Swedish Society for Medical ResearchOpen access journalThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

Risk factors for developing hypoxic respiratory failure in COPD

Background: Hypoxemia is associated with worse outcomes in COPD. The aim of the study was to investigate the prevalence, incidence, and risk factors of hypoxic respiratory failure (HRF) in COPD. Patients and methods: This was a longitudinal analysis of data from the Swedish National Register of COPD. HRF was defined as resting saturation ≤88% or long-term oxygen therapy. Risk factors for developing HRF were analyzed using multiple logistic regression and receiver operating characteristic curve analysis. Results: A total of 3,061 patients were included; mean forced expiratory volume in 1 second was 1.47 L; mean age was 70 years; and 54% were females. Median follow-up time was 1.8 years (interquartile range 1.3–2.4 years). HRF was present in 43 (1.4%) patients at baseline and 74 (2.4%) patients at follow-up. Among patients without HRF at baseline, 49 (1.6%) developed HRF during follow-up. The risk was highest for patients in Global initiative for Chronic Obstructive Lung Disease (GOLD) 2017 stage IV or groups C or D at baseline. Developing HRF was independently predicted by lower forced expiratory volume in 1 second and lower COPD Assessment Test score, with a c-statistic of 0.84 (95% CI, 0.70–0.91). When the multivariable model used the GOLD 2017 variables stages I–IV and the dichotomized variables frequent exacerbations and COPD Assessment Test ≥10; the c-statistic increased slightly to 0.86 (95% CI, 0.80–0.92; P<0.0001). Conclusion: In patients with COPD, the prevalence and incidence of HRF was low and was predicted well by more severe air flow limitation and worse health status. The risk is highest in patients with GOLD stage IV and GOLD groups C or D

Swedish translation and linguistic validation of the multidimensional dyspnoea profile

Background: Dyspnoea, the feeling of breathing discomfort, consists of multiple dimensions that can vary in intensity, including the level of unpleasantness, qualities or descriptors of the sensation, emotional responses, and impact on function. No validated instrument for multidimensional measurement of dyspnoea is available in Swedish. The Multidimensional Dyspnea Profile (MDP) was recently developed to measure the unpleasantness, sensory qualities, and emotional responses of dyspnoea across diseases and settings. We aimed to take forward a Swedish version of the MDP. Methods: Translation and linguistic validation of the MDP was conducted in collaboration with a specialised company in the field (Mapi, Lyon, France). The structured process involved forward and backward translations by two independent certified translators, input from an in-country linguistic consultant, the developers, and three respiratory physicians. Understandability and acceptability were evaluated through in-depth interviews with five patients with dyspnoea in accordance with international guidelines. Results and Conclusion: A Swedish version of the MDP was obtained and linguistically validated. The MDP includes 11 rated items: the immediate unpleasantness of the sensation, the presence and intensity of five sensory qualities, and the intensity of five emotional responses to dyspnoea. The time period of measurement is specified by the user. The MDP is copyrighted by the developers but can be used free of charge in the context of non-funded academic research. Conclusion: The MDP is the first instrument for measuring multiple dimensions of dyspnoea available in Swedish and should be validated across diseases and settings. Multidimensional measurement is essential for improved assessment and management of dyspnoea in research and clinical care

Persistent disabling breathlessness in chronic obstructive pulmonary disease

Objective: To determine the prevalence, change in breathlessness status over time, and risk factors for disabling and persistent disabling breathlessness in relation to treatments in chronic obstructive pulmonary disease (COPD). Materials and methods: Longitudinal analysis of data from the Swedish National Register of COPD with breathlessness measured using modified Medical Research Council (mMRC) scores at two subsequent visits. Prevalence of disabling breathlessness (mMRC ≥2 at baseline) and persistent disabling breathlessness (disabling breathlessness at baseline and follow-up) was investigated in relation to COPD treatment. Risk factors for disabling breathlessness, change from non-disabling to disabling breathlessness, and persistent disabling breathlessness were analyzed using multiple logistic regression. Results: A total of 1,689 patients were included in the study with a median follow-up of 12 months (interquartile range: 4 months). Prevalence of disabling breathlessness was 54% at baseline. Persistent disabling breathlessness was present in 43% of patients despite treatment and in 74% of patients despite combined inhaled triple therapy and physiotherapy. Risk factors for disabling breathlessness or change to disabling breathlessness were higher age, lower lung function, frequent exacerbations, obesity, heart failure, depression, and hypoxic respiratory failure (all P<0.05). Persistent disabling breathlessness was associated with lower lung function and ischemic heart disease (all P<0.05). Conclusion: Disabling breathlessness is common in COPD despite treatment, which calls for improved symptomatic treatments and consideration of factors influencing disabling breathlessness. Factors influencing disabling breathlessness should be considered for COPD management

Dyspnoea-12 : A translation and linguistic validation study in a Swedish setting

Background: Dyspnoea consists of multiple dimensions including the intensity, unpleasantness, sensory qualities and emotional responses which may differ between patient groups, settings and in relation to treatment. The Dyspnoea-12 is a validated and convenient instrument for multidimensional measurement in English. We aimed to take forward a Swedish version of the Dyspnoea-12. Methods: The linguistic validation of the Dyspnoea-12 was performed (Mapi Language Services, Lyon, France). The standardised procedure involved forward and backward translations by three independent certified translators and revisions after feedback from an in-country linguistic consultant, the developerand three native physicians. The understanding and convenience of the translated version was evaluated using qualitative in-depth interviews with five patients with dyspnoea. Results: A Swedish version of the Dyspnoea-12 was elaborated and evaluated carefully according to international guidelines. The Swedish version, 'Dyspné-12', has the same layout as the original version, including 12 items distributed on seven physical and five affective items. The Dyspnoea-12 is copyrighted by the developer but can be used free of charge after permission for not industry-funded research. Conclusion: A Swedish version of the Dyspnoea-12 is now available for clinical validation and multidimensional measurement across diseases and settings with the aim of improved evaluation and management of dyspnoea

Daily duration of long-term oxygen therapy and risk of hospitalization in oxygen-dependent COPD patients

Introduction: Long-term oxygen therapy (LTOT) improves survival and may reduce hospital admissions in patients with chronic obstructive pulmonary disease (COPD) and severe hypoxemia, but the impact of daily duration of LTOT on hospitalization rate is unknown. We aimed to estimate the association between the daily duration of LTOT (24 vs 15 h/d) and hospital admissions in patients with LTOT due to COPD. Materials and methods: A population-based, cohort study included patients who started LTOT due to COPD between October 1, 2005 and June 30, 2009 in the Swedish national register for respiratory failure (Swedevox). Time to first hospitalization from all causes and from respiratory or nonrespiratory disease, using the National Patient Registry, was analyzed using Fine–Gray regression, adjusting for potential confounders. Results: A total of 2,249 patients with COPD (59% women) were included. LTOT 24 h/d was prescribed to 539 (24%) and LTOT 15–16 h/d to 1,231 (55%) patients. During a median follow-up of 1.1 years (interquartile range, 0.6–2.1 years), 1,702 (76%) patients were hospitalized. No patient was lost to follow-up. The adjusted rate of all-cause hospitalization was similar between LTOT 24 and 15–16 h/d (subdistribution hazard ratio [SHR] 0.96; [95% CI] 0.84–1.08), as was cause-specific hospitalizations analyzed for respiratory disease (SHR: 1.00; 95% CI: 0.86–1.17) and nonrespiratory disease (SHR: 0.92; 95% CI: 0.75–1.14). Conclusion: LTOT prescribed for 24 h/d was not associated with decreased hospitalization rates compared with LTOT for 15–16 h/d in patients with oxygen-dependent COPD. The results should be validated in a randomized controlled trial

Patient reported outcome measures in chronic obstructive pulmonary disease - Which to use?

Patient-reported outcomes (PROs), such as symptoms and perceived health status, are essential in chronic obstructive pulmonary disease (COPD) for determining disease severity, impact on daily life, effect of treatment and recovery from exacerbations. This field has evolved rapidly and there are a plethora of instruments assessing different PROs. Here, we aim to provide an understanding of the concept of PROs in COPD. The PROs reflect important aspects of COPD which have a direct impact on daily life. Common symptoms such as dyspnea, cough, phlegm, anxiety, fatigue, and pain and as well as physical function and the risk for and occurrence of acute exacerbations should be assessed both in the clinic and in research. Besides impact on daily life, some of the PROs are related to disease progress and mortality. Construction of composite variables including different disease specific and generic PROs provide a general estimation of health status