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Supplementary_Information_Frith for Pragmatic randomised controlled trial of a personalised intervention for carers of people requiring home oxygen therapy by Peter Frith, Ruth Sladek, Richard Woodman, Tanja Effing, Sandra Bradley, Suzanne van Asten, Tina Jones, Khin Hnin, Mary Luszcz, Paul Cafarella, Simon Eckermann, Debra Rowett and Paddy A Phillips in Chronic Respiratory Disease

Supplementary_Information_Frith for Pragmatic randomised controlled trial of a personalised intervention for carers of people requiring home oxygen therapy by Peter Frith, Ruth Sladek, Richard Woodman, Tanja Effing, Sandra Bradley, Suzanne van Asten, Tina Jones, Khin Hnin, Mary Luszcz, Paul Cafarella, Simon Eckermann, Debra Rowett and Paddy A Phillips in Chronic Respiratory Disease

Background: This study investigated whether descriptors of breathlessness differed after participation in an 8 week pulmonary rehabilitation program and whether changes in sensory quality would be reflected in responsiveness to pulmonary rehabilitation. Methods: People with COPD provided descriptors for their sensation of breathlessness before and after an 8 week pulmonary rehabilitation program. Primary outcomes for responsiveness to pulmonary rehabilitation were the 6 minute walk distance (6MWD) and the St George Respiratory questionnaire. Significant proportional shifts for sensory categories after rehabilitation were identified using the McNemar test. Random effects mixed modeling was used to determine significance of differences for primary outcomes between subjects modifying or not modifying descriptors of breathlessness. Results: Of the 107 people referred to the pulmonary rehabilitation program, 94 met the spirometric criteria for COPD, with 58 having data for pre and post assessments (36 males, 71 ± 9 years old, percent of predicted FEV1 58 ± 24%). A significant proportion of subjects reduced descriptors of air hunger (P = .03, odds ratio 0.31, 95% CI 0.09-0.89) and depressed, regret, helpless (P = .04, odds ratio 0.36, 95% CI 0.10-1.05) following rehabilitation. Subjects reducing their use of descriptors of air hunger had greater improvements in the 6MWD after rehabilitation (P = .006, mean increase 46 m). The sensory quality of breathlessness was modified for approximately one third of subjects after pulmonary rehabilitation, with significant improvements in the 6MWD for subjects who reduced their use of descriptors of air hunger. Refereed/Peer-reviewed

Questions: Are volunteered and endorsed descriptors of recalled breathlessness consistent with descriptors of exerciseinduced breathlessness? Are volunteered and endorsed descriptors of exercise-induced breathlessness consistent? Design: Within-participant, repeated measures, experimental study. Participants: 57 people with symptomatic chronic respiratory disease aged 71 years. Intervention: There were three conditions. The first was recalled breathlessness. Two conditions of exercise-induced breathlessness were created by getting the participants to undertake the 6-min Walk Test twice (breathlessness 1 and 2). Outcome measures: Descriptors of breathlessness were volunteered (where participants’ used their own words) or endorsed (from a pre-existing list of 15 breathlessness statements). Results: Emotive descriptors made up 65% of recalled descriptors compared with 11% of exercise-induced descriptors, whereas physical descriptors made up 35% of recalled descriptors compared with 89% of exercise-induced descriptors. Of the 237 potential language pairs volunteered to describe recalled and exercise-induced breathlessness 1, only 27 (11%) were identical whereas of the 171 potential language pairs endorsed as describing recalled and exercise-induced breathlessness 1, 66 (39%) were identical. Of the 175 potential language pairs of descriptors volunteered to describe exercise-induced breathlessness 1 and 2, 72 (41%) were identical whereas of the 153 potential language pairs endorsed as describing exercise-induced breathlessness 1 and 2, 71 (46%) were identical. Conclusion: The language used to describe exercise-induced breathlessness immediately after two walking challenges was similar. However, descriptions of recalled breathlessness did not consistently match descriptions of exercise-induced breathlessness, which may reflect the different contexts under which breathlessness was recalled and induced. [Williams M, Garrard A, Cafarella P, Petkov J, Frith P (2009) Quality of recalled dyspnoea is different than exercise-induced dyspnoea: an experimental study. Australian Journal of Physiotherapy 55: 177–183]

BACKGROUND: In patients with COPD, psychological interventions usually target generalized anxiety and depression rather than the sensation of breathlessness. The objectives of this pilot study were to develop and implement a cognitive behavioral therapy (CBT) program specific to the perceptual experience of breathlessness, identify practical issues in the study protocol, and estimate beneficial effects of combining the CBT program with comprehensive pulmonary rehabilitation METHODS: The CBT program for the sensation of breathlessness (Breathing: Recognize sensations, Explore thoughts and beliefs, Validate thoughts as useful or harmful, Evolve and change behavior [BREVE]) was developed as a sequential series of 8 modules enabling it to be embedded within an 8-week comprehensive pulmonary rehabilitation program. When appropriate, outcomes from the pilot group (comprehensive pulmonary rehabilitation program + BREVE) were compared with those from a retrospective control group (comprehensive pulmonary rehabilitation program only). Outcomes included feedback provided by pilot study subjects, sensation of breathlessness (volunteered and endorsed descriptors of breathlessness), 6-min walk distance (6MWD), and St George Respiratory Questionnaire (SGRQ) total score. Within-group analyses were undertaken for descriptors of breathlessness (the McNemar test), whereas between-group analyses (repeated-measures analysis of variance, effect-size comparison) were conducted for the 6MWD and SGRQ total score RESULTS: Pilot (n = 11) and control (n = 58) groups were not significantly different at baseline. Feedback indicated that the program structure and content were positively received. No significant changes were evident for the sensation of breathlessness or the SGRQ score (