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Background: Patient-initiated action plans are an important component of COPD self-management (SM) interventions. When integrated into SM interventions, these action plans have proven to be effective in reducing exacerbation severity, hospitalisations, and costs and in improving health status in patients with COPD without severe comorbidities. Because of overlap in symptoms, a self-treatment (ST) approach that focuses solely on traditional symptoms of COPD is inadequate for patients with COPD and comorbidities. The COPE-III SM intervention combines (I) patient-initiated action plans that are tailored to the individual’s co-morbid disease(s), and (II) ongoing nurse support. In this paper we provide information regarding the integration of information from two previous COPD SM studies (COPE I and II) in the development of the current COPE-III ST approach. Materials and methods: COPE-III ST materials include daily symptom diaries and action plans that take patient’s common comorbidities [chronic heart failure (CHF), anxiety, depression, ischaemic heart disease (IHD), and diabetes] into account. The comorbid diary and action plans components were developed in collaboration with multiple disease-experts. Results: Previous SM studies have highlighted some essential topics that need to be considered when developing a SM or ST approach: ‘when to initiate ST’, ‘how to optimize materials and safety’, and ‘how to achieve behavioural change’. In the COPE-III study, ST is initiated after a significant change in symptoms. This is consistent with the COPE-II approach and was implemented because disease symptoms are often present even when patients are stable. We have tried to ensure patient safety by providing an easily accessible case-manager to patients throughout their involvement in the study. Furthermore, a psychologist has ensured the use of behavioural change techniques throughout the intervention. Conclusions: We should continue to learn from our experiences with SM interventions to further optimize future SM and ST interventions. The use of materials that are suitable for different levels of patient literacy and the training of health care providers are other points of improvement.

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

We used a pragmatic randomised controlled trial to evaluate a behavioural change strategy targeting carers of chronically hypoxaemic patients using long-term home oxygen therapy. Intervention group carers participated in personalised educational sessions focusing on motivating carers to take actions to assist patients. All patients received usual care. Effectiveness was measured through a composite event of patient survival to hospitalisation, residential care admission or death to 12 months. Secondary outcomes at baseline, 3, 6 and 12 months included carer and patient emotional and physical well-being. No difference between intervention ( n = 100) and control ( n = 97) patients was found for the composite outcome (hazard ratio (HR) 1.22, 95% confidence interval (CI) = 0.89, 1.68; p = 0.22). Improved fatigue, mastery, vitality and general health occurred in intervention group patients (all p values < 0.05). No benefits were seen in carer outcomes. Mortality was significantly higher in intervention patients (HR = 2.01, 95% CI = 1.00, 4.14; p = 0.05; adjusted for Australia-modified Karnofsky Performance Status), with a significant diagnosis–intervention interaction ( p = 0.028) showing higher mortality in patients with COPD (HR 4.26; 95% CI = 1.60, 11.35) but not those with interstitial lung disease (HR 0.83; 95% CI = 0.28, 2.46). No difference was detected in the primary outcome, but patient mortality was higher when carers had received the intervention, especially in the most disabled patients. Trials examining behavioural change interventions in severe disease should stratify for functionality, and both risks and benefits should be independently monitored. Trial registration: Australian New Zealand Clinical Trials Registry (ACTRN12607000177459).

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 (

Background: Previous studies of the qualitative sensation of breathlessness have suggested that greater sensory discomfort is reported as airflow obstruction increases. This study investigated relationships between the language of breathlessness and severity of impairment in subjects with COPD. Methods: Using a prospective, observational approach, subjects completed a structured interview in which they volunteered words to describe their sensation of breathlessness and endorsed statements from a preexisting descriptor list. Global impairment was assessed by the BMI, airflow obstruction, dyspnea, and exercise capacity (BODE) index. Independent t tests and logistic regression analyses (odds ratios) were used to assess relationships between language categories and severity of impairment. Results: In this group of 91 people (47 men, 70 ± 10 years of age, percent predicted FEV1 54 ± 23), subjects volunteering extreme affective descriptors (frightening, awful, worried) had greater impairment (BODE index, perceived respiratory disability, functional exercise capacity, and airways obstruction), and this language category was significantly associated with increasing BODE index scores (odds ratio [OR] = 1.49; 95% CI, 1.18 to 1.86; P = .001). Descriptors denoting heavy, rapid, more, shallow, or does not go in or out all the way were significantly less likely to be selected as BODE index scored increased (OR = 0.75; 95% CI, 0.16 to 0.93). Conclusions: Affective descriptors or the emotional response to the sensation of breathlessness have a significant relationship with severity of COPD impairments. Affective descriptors may reflect the degree of threat imposed by the sensation and predict the likelihood of long-term behavioral changes Refereed/Peer-reviewed

Aim: To determine, in Australian chronic obstructive pulmonary disease (COPD) outpatients, the prevalence of nutritional depletion, adequacy of dietary intake and relationship between nutritional depletion and clinical indicators. Methods: Cross-sectional study of 66 stable COPD outpatients (mean forced expiratory volume in one second (FEV1) of 60% predicted (95% confidence interval 54, 67) ). Nutritional status was assessed using body mass index (BMI) and fat-free mass index (FFMI). Four-day estimated food records were compared with the new Australian Nutrient Reference Values. Clinical indicators included respiratory function and quality of life (QoL) using the St George Respiratory Questionnaire. Results: Thirty per cent of subjects (n = 20) were nutritionally depleted (BMI

If descriptors of the sensation of breathlessness are able to differentiate between medical conditions, the language of breathlessness could potentially have a role in differential diagnosis. This study investigated whether the language used to describe the sensation of breathlessness accurately categorized older individuals with and without a prior diagnosis of COPD.Using a parallel-group design, participants with and without a prior diagnosis of COPD volunteered words and phrases and endorsed up to three statements to describe their sensation of breathlessness. Cluster analysis (v-fold cross-validation) was applied, and subjects were clustered by their choice of words. Cluster membership was then compared to original group membership (COPD vs non-COPD), and predictive power was assessed.Groups were similar for age and gender (COPD, n = 94; 48 men; mean age, 70 +/- 10 years [+/- SD]; vs non-COPD, n = 55; 21 men; mean age, 69 +/- 13 years) but differed significantly in breathlessness-related impairment, intensity, and quality of life (p0.0001). Cluster membership corresponded accurately with original group classifications (volunteered, 85%; and up to three statements, 68% agreement). Classification based on a single best descriptor (volunteered [62%] or endorsed [55%]) was less accurate for group membership.Language used to describe the sensation of breathlessness differentiated people with and without a prior diagnosis of COPD when descriptors were not limited to a single best word or statement.