Faire avancer le savoir.Améliorer les résultats.

Advancing knowledge.Improving outcomes.

1618

april

april

2020

CANADIAN RESPIRATORY CONFERENCE

Abstracts

SHERATON ON THE FALLS, NIAGARA FALLS, ON

CTS-SCT.CA/CRC

2 0 2 0 C A N A D I A N R E S P I R ATO R Y C O N F E R E N C E

A B S T R AC T S | N O V E L R E H A B I L I TAT I O N I N T E R V E N T I O N S , D E L I V E R Y A N D O U TC O M E S

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47 PRIORITIES IN PULMONARY REHABILITATION RESEARCH: THE PATIENT PERSPECTIVESachi O'Hoski1,2, Lauren Ellerton1, Anne-Marie Selzler1, Roger Goldstein1,3, Dina Brooks1,2,3

1West Park Healthcare Centre, Toronto, Canada. 2McMaster University, Hamilton, Canada. 3University of Toronto, Toronto, Canada

A B S T R A C TRATIONALE: Patient engagement in research has the potential to achieve more relevant results, improve study recruitment and retention, and enhance the implementation and dissemination of study results. The Canadian Institutes of Health Research definition of patient engagement includes meaningful and active collaboration in priority setting. The purpose of this study was to elicit patients’ views of research priorities related to pulmonary rehabilitation (PR). METHODS: Participants completed PR within the last 5 years and were able to communicate in English. They were not required to have had any previous research experience or a particular diagnosis. We used a modified nominal group technique. Participants attended one of five meetings during which they generated ideas, presented them for clarification and discussion, and prioritized their top three ideas out of all of those presented. They completed a member checking and satisfaction questionnaire following the meeting. All topics prioritized by participants were grouped into themes generated through content analysis. RESULTS: The five meetings comprised a total of 14 participants. They had a mean age of 71.3 (SD 8.3) years, 8 (57.1%) were women and the majority (78.6%) had a primary respiratory diagnosis of COPD. Participants had completed PR an average of 19.3 (SD 18.3) months prior. Twenty-six topics were prioritized and grouped under the following themes: factors that influence motivation/adherence (5 topics), ongoing assessment/follow-up (5), personalized programming (4), pre-PR communication (3), self-management/coping (3), explanation of exercise assessments/programs (3), and assessment of patient knowledge/education sessions (3). The majority of participants “totally” agreed that they had equal opportunity to express their thoughts during the meeting (100%), that the topics in the member checking questionnaire matched what they think is important in PR research (72.7%), and that the meeting was a positive experience (100%). CONCLUSION: The next phase of this study is the distribution of a questionnaire to a larger sample of former PR participants so that the 26 topics identified in all meetings can be prioritized. The results of this study will inform future research projects and identify needs for knowledge translation.

48 PATIENT-ORIENTED OUTCOMES IN PULMONARY REHABILITATION OF PATIENTS WITH INTERSTITIAL LUNG DISEASES: A SYSTEMATIC REVIEWAna Oliveira1,2,3, Razanne Habash1, Alda Marques3,4, Dina Brooks1,2

1School of Rehabilitation Science, McMaster University, Hamilton, Canada. 2West Park Healthcare Centre, Toronto, Canada. 3Lab 3R – Respiratory Research and Rehabilitation Laboratory, School of Health Sciences (ESSUA), University of Aveiro, Aveiro, Portugal. 4Institute for Biomedicine (iBiMED), University of, Aveiro, Portugal

A B S T R A C TRATIONALE: Pulmonary rehabilitation (PR) is recommended for most chronic lung diseases; however, its effects on self-reported outcomes of patients with interstitial lung diseases (ILD) are still unclear. Reasons include inadequate reports of studies’ methods, which make the interpretation of results across trials challenging. A core-set of outcomes and measures for trials in ILD recommends the assessment of dyspnea (modified Medical Research Council –mMRC, Dyspnea Scale, dyspnea 12, University of California, San Diego Shortness of Breath Questionnaire -UCSD-SBQ), cough (Leicester cough questionnaire) and health-related quality of life (HRQoL) (St. George's Respiratory Questionnaire –SGRQ, 36-Item Short Form Health Survey –SF-36 and the visual analogue scale). However, the use of such outcomes and measures in studies of PR is unknown. This systematic review summarised the patient-reported outcomes and outcome measures (PROMs) most frequently used in clinical trials of PR in patients with ILD.METHODS: Pubmed, Web of Science, Scopus and EBSCO were searched from inception until August 2019. Randomized controlled trials exploring the effects of PR in patients with ILD were included. Two researchers independently performed title, abstract and full text screening and consensus was reached.

RESULTS: The search strategy resulted in 10010 possibly eligible articles. After comprehensive screening, 15 articles were withheld for data extraction. The outcomes most assessed were dyspnea (n= 13) and HRQoL (n=12). PROMs included the mMRC (n=8), SGRQ (n=8), modified Borg scale – dyspnea (n=5), SGRQ-I (n=3), Chronic Respiratory Disease Questionnaire (n=3), Hospital Anxiety and Depression Scale (n=3), International Physical Activity Questionnaire (n=2), MRC (n=2), global rating of change for walking ability (n=2), SF-36 (n=1), adherence diaries (n=1), Fatigue Severity Scale (n=1), modified Borg scale – fatigue (n=1), Baseline Dyspnea Index (n=1) and the UCSD-SBQ (n=1).CONCLUSIONS: Most trials included dyspnea and HRQoL as outcomes and use the indicated PROMs. Nevertheless, no study has assessed cough. Cough is an important symptom in ILD and although there are established measures of cough, it is not being reported in PR outcomes. Future trials should consider cough as an outcome to clarify whether PR impacts on this key symptom.

49 AUGMENTATION THERAPY IN LUNG DISEASE DUE TO ALPHA-1 ANTITRYPSIN DEFICIENCY: SURVIVAL ADVANTAGE OF AUGMENTED PATIENTS COMPARED TO MATCHED AUGMENTATION NAÏVE PATIENTS FOLLOWED FOR UP TO 15 YEARSRobert Sandhaus1,2, Paul Ellis3, Kristen Holm2, Radmila Choate4, David Mannino4, Robert Stockley5, Alice Turner3

1AlphaNet Canada, Toronto, Canada. 2National Jewish Health, Denver, Colorado, USA. 3Institute of Applied Health Research, University of Birmingham, Birmingham, United Kingdom. 4University of Kentucky College of Public Health, Lexington, Kentucky, USA. 5Lung Investigation Unit Medicine, Queen Elizabeth Hospital, Birmingham, United Kingdom

A B S T R A C TAlpha-1 antitrypsin (AAT) augmentation therapy is the only specific treatment available for alpha-1 antitrypsin deficiency (AATD) related lung disease. It is widely used in the US and the majority of Western Europe but remains unavailable to UK patients with AATD. Randomized control trials (RCTs) of augmentation therapy have consistently demonstrated its benefit in preserving lung tissue as measured with CT densitometry. These studies were not adequately powered to detect differences in mortality or progression to lung transplant. We used large prospectively followed AATD patient populations to provide insight into these important clinical endpoints.INCLUSION CRITERIA: 1. Evidence of lung disease (FEV1/FVC <0.7 or emphysema on CT) 2. PiZZ or worse genotype, 3. age >18. TREATMENT GROUP: AATD patients prescribed AAT augmentation therapy were prospectively followed as part of AlphaNet’s Disease Management and Prevention program with monthly telephone interviews by trained staff. Mortality data was derived from the US National Death Index and direct notification by family. Data collection was based on patient consenting and data sharing was in line with US HIPAA guidelines. CONTROL GROUP: Augmentation therapy naïve AATD patients from the AATD UK Registry were prospectively followed up with annual medical review and physiological measurements. Mortality data was derived from a central NHS database, general practitioners or by direct notification by family. Subjects were matched based on age, sex, baseline year, and smoking history. 656 subjects per group were able to be matched and analyzed.Overall survival was longer in the treatment group compared to matched controls (see figure), with 10-year survival rates of 80% (95% CI 76.7 to 83.4) and 68.5% (95% CI 64.2 to 73.1) respectively (p<0.001). For all patients who underwent lung transplantation at any time, 58.5% (95% CI 40.3 to 71.2) of the control group had a lung transplant within 5 years of baseline assessment compared with 13.3% (95% CI 7.54 to 18.7) for the treatment group. These results suggest that treatment with augmentation therapy prolongs survival and time to lung transplantation compared to those with lung disease who are augmentation naïve.