Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

2018 ◽  
Vol 33 (4) ◽  
pp. 805-814 ◽  
Author(s):  
Sara Souto-Miranda ◽  
Alda Marques
Keyword(s):  
Health Professionals ◽  
Pulmonary Rehabilitation ◽  
Functional Performance ◽  
Core Outcome Set ◽  
Chronic Obstructive ◽  
Core Outcome ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Outcome Set ◽  
Informal Carers

Introduction: Pulmonary rehabilitation implies a comprehensive assessment. Although several outcomes are commonly measured, those are selected mainly by health professionals and researchers, with the voice of patients and informal caregivers being minimally captured. Qualitative studies are fundamental to enhance our knowledge on perspectives of different stakeholders involved in pulmonary rehabilitation. Objective: This study aimed to explore the views of different stakeholders on outcomes of pulmonary rehabilitation, contributing to one of the stages of a core outcome set for pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD). Methods: Semi-structured interviews were conducted with 12 patients with COPD, 11 informal carers and 10 health professionals. Data were analysed with content analysis, followed by thematic analysis to gain deeper understanding of the different perspectives. Results: A total of 44 outcomes were identified, being the most reported ‘improving functional performance’ (67%) and ‘reducing and taking control over dyspnoea’ (64%). Five relevant themes across stakeholders were generated: having a healthy mind in a healthy body; I can(’t) do it; feeling fulfilled; knowing more, doing better and avoiding doctors and expenses. Although perspectives were mostly consensual, some outcomes were only valued by health professionals (e.g. pulmonary function) or by patients and informal carers (e.g. quality of sleep). Conclusion: Views of the different stakeholders on outcomes of pulmonary rehabilitation were similar although, some specificities existed. Comprehensive assessments are needed to reflect what is valued by the different stakeholders in pulmonary rehabilitation. This study contributed to a future core outcome set in this field.

scholarly journals Why do people with chronic obstructive pulmonary disease repeat pulmonary rehabilitation? Perspectives of patients and health professionals

2018 ◽  
Vol 16 ◽  
pp. 147997311881642 ◽  
Author(s):  
Shannon Storey ◽  
Bircan Erbas ◽  
Anne Elizabeth Holland
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Health Professionals ◽  
Pulmonary Rehabilitation ◽  
Tertiary Hospital ◽  
Optimal Time ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Intensity Of Exercise

Many people with chronic obstructive pulmonary disease (COPD) undertake pulmonary rehabilitation more than once. This study examined patient experiences and health professional perspectives regarding repeating pulmonary rehabilitation. Participants were 14 patients with COPD and 15 health professionals. Patients had undertaken pulmonary rehabilitation at a tertiary hospital; health professionals were doctors, physiotherapists, and nurses. Semi-structured interviews were conducted, and data were analyzed using thematic analysis. Patients described improved fitness and better breathing after repeating pulmonary rehabilitation; however, some also reported that repeating required confronting their disease progression. Improved confidence and motivation were an important outcome of repeating. Although most participants had attended community-based exercise classes, they valued the greater intensity of exercise and closer supervision that came with repeating pulmonary rehabilitation. Health professionals reported referring patients to repeat pulmonary rehabilitation if they had worsening functional capacity, an exacerbation, or hospitalization. There was no agreement regarding the optimal time for repeating and many would only re-refer if the patient demonstrated motivation to attend. In conclusion, patients with COPD reported many symptomatic benefits from repeating pulmonary rehabilitation and gained confidence from a supervised program. There was no agreement between health professionals regarding the optimal time to repeat pulmonary rehabilitation.

scholarly journals Home-based pulmonary rehabilitation for people with COPD: A qualitative study reporting the patient perspective

2017 ◽  
Vol 15 (2) ◽  
pp. 123-130 ◽  
Author(s):  
Aroub Lahham ◽  
Christine F McDonald ◽  
Ajay Mahal ◽  
Annemarie L Lee ◽  
Catherine J Hill ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Physical Fitness ◽  
Pulmonary Rehabilitation ◽  
Positive Impact ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Home Setting ◽  
Supervised Exercise ◽  
Home Based

This study aimed to document the perspective of patients with chronic obstructive pulmonary disease (COPD) who underwent home-based pulmonary rehabilitation (HBPR) in a clinical trial. In this qualitative study, open-ended questions explored participants’ views regarding HBPR. Thirteen semi-structured interviews were analysed using a thematic analysis approach. Major themes from interviews included the positive impact of HBPR on physical fitness, breathing and mood. Participants valued the flexibility and convenience of the programme. Participants also highlighted the importance of social support received, both from the physiotherapist over the phone and from family and friends who encouraged their participation. Reported challenges were difficulties in initiating exercise, lack of variety in training and physical incapability. While most participants supported the home setting, one participant would have preferred receiving supervised exercise training at the hospital. Participants also reported that HBPR had helped establish an exercise routine and improved their disease management. This study suggests that people with COPD valued the convenience of HBPR, experienced positive impacts on physical fitness and symptoms and felt supported by their community and programme staff. This highly structured HBPR model may be acceptable to some people with COPD as an alternative to centre-based pulmonary rehabilitation.

scholarly journals The importance of stakeholder selection in core outcome set development: how surveying different health professionals may influence outcome selection

Trials ◽  
2015 ◽  
Vol 16 (S2) ◽  
Author(s):  
Kerry Avery ◽  
Katy Chalmers ◽  
Katie Whale ◽  
Natalie Blencowe ◽  
Rhiannon Macefield ◽  
...  
Keyword(s):  
Health Professionals ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Outcome Set ◽  
Outcome Selection

scholarly journals Core outcome set for the management of acute exacerbations of chronic obstructive pulmonary disease: the COS-AECOPD ERS Task Force study protocol

2020 ◽  
Vol 6 (3) ◽  
pp. 00193-2020
Author(s):  
Alexander G. Mathioudakis ◽  
Fekri Abroug ◽  
Alvar Agusti ◽  
Per Bakke ◽  
Konstantinos Bartziokas ◽  
...  
Keyword(s):  
Study Protocol ◽  
Task Force ◽  
Core Outcome Set ◽  
Measurement Instrument ◽  
Chronic Obstructive ◽  
Core Outcome ◽  
European Respiratory Society ◽  
Copd Exacerbations ◽  
Outcome Set ◽  
Multi Stakeholder

Randomised controlled trials (RCTs) on the management of COPD exacerbations evaluate heterogeneous outcomes, often omitting those that are clinically important and patient relevant. This limits their usability and comparability. A core outcome set (COS) is a consensus-based minimum set of clinically important outcomes that should be evaluated in all RCTs in specific areas of health care. We present the study protocol of the COS-AECOPD ERS Task Force, aiming to develop a COS for COPD exacerbation management, that could remedy these limitations.For the development of this COS we follow standard methodology recommended by the COMET initiative. A comprehensive list of outcomes is assembled through a methodological systematic review of the outcomes reported in relevant RCTs. Qualitative research with patients with COPD will also be conducted, aiming to identify additional outcomes that may be important to patients, but are not currently addressed in clinical research studies. Prioritisation of the core outcomes will be facilitated through an extensive, multi-stakeholder Delphi survey with a global reach. Selection will be finalised in an international, multi-stakeholder meeting. For every core outcome, we will recommend a specific measurement instrument and standardised time points for evaluation. Selection of instruments will be based on evidence-informed consensus.Our work will improve the quality, usability and comparability of future RCTs on the management of COPD exacerbations and, ultimately, the care of patients with COPD. Multi-stakeholder engagement and societal support by the European Respiratory Society will raise awareness and promote implementation of the COS.

scholarly journals ERS Statement: A core outcome set for clinical trials evaluating the management of chronic obstructive pulmonary disease (COPD) exacerbations

2021 ◽  
pp. 2102006
Author(s):  
Alexander G. Mathioudakis ◽  
Fekri Abroug ◽  
Alvar Agusti ◽  
Sachin Ananth ◽  
Per Bakke ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Systematic Reviews ◽  
Health Professionals ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Measurement Instruments ◽  
Copd Exacerbations ◽  
The Core ◽  
Arterial Blood ◽  
Outcome Set

Clinical trials evaluating the management of acute exacerbations of COPD assess heterogeneous outcomes, often omitting those that are clinically relevant or more important to patients. We have developed a core outcome set, a consensus-based minimum set of important outcomes that we recommend are evaluated in all future clinical trials on exacerbations management, to improve their quality and comparability. COPD exacerbations outcomes were identified through methodological systematic reviews and qualitative interviews with 86 patients from 11 countries globally. The most critical outcomes were prioritized for inclusion in the core outcome set through a two-round Delphi survey that was completed by 1,063 participants (256 patients, 488 health professionals and 319 clinical academics) from 88 countries in 5 continents. Two global, multi-stakeholder, virtual consensus meetings were conducted to (i) finalize the core outcome set and (ii) prioritize a single measurement instrument to be used for evaluating each of the prioritized outcomes. Consensus was informed by rigorous methodological systematic reviews. The views of patients with COPD were accounted for in all stages of the project. Survival, treatment success, breathlessness, quality of life, activities of daily living, need for higher level of care, arterial blood gases, disease progression, future exacerbations and hospital admissions, treatment safety and adherence were all included in the core outcome set. Focused methodological research was recommended to further validate and optimize some of the selected measurement instruments. The panel did not consider the prioritized set of outcomes and associated measurement instruments burdensome for patients and health professionals to use.

scholarly journals Development of a Core Outcome Set for the Benefits and Adverse Events of Acute Heart Failure in Clinical Trials of Traditional Chinese Medicine and Western Medicine: A Study Protocol

2021 ◽  
Vol 8 ◽  
Author(s):  
Ruijin Qiu ◽  
Songjie Han ◽  
Xuxu Wei ◽  
Changming Zhong ◽  
Min Li ◽  
...  
Keyword(s):  
Heart Failure ◽  
Clinical Trials ◽  
Chinese Medicine ◽  
Traditional Chinese Medicine ◽  
Adverse Events ◽  
Health Professionals ◽  
Core Outcome Set ◽  
Essential Medicines ◽  
Core Outcome ◽  
Outcome Set

Aims: To identify a minimum set of efficacy and adverse events for patients with acute heart failure (AHF) among different stakeholders in clinical trials of traditional Chinese medicine and Western medicine.Methods and Analysis: First, we will develop a preliminary long list of outcomes that includes efficacy and adverse events/reactions via three steps: (i) systematic reviews of efficacy and safety outcomes for clinical trials of AHF; (ii) drugs included in the National Medical Insurance Catalog, the National Essential Medicines Catalog, and the WHO Essential Medicines List will be collected and safety outcomes extracted from the package inserts; and (iii) patients' or caregivers' semi-structured interviews will be carried out to add new viewpoints to the list. Second, after merging outcomes and grouping them under different outcome domains, questionnaires for health professionals and patients will be separately developed. Further, two rounds of Delphi survey for health professionals and a survey for patients and the public will be carried out. Third, different stakeholders will discuss and determine the final core outcome set (COS) for AHF in a consensus meeting.Ethics and Dissemination: The entire project has been approved by the Ethics Committee of the main institution. After the final COS is developed, it will be published and discussed widely in conferences.Clinical Trial Registration: This study is registered with the Core Outcome Measures in Effectiveness Trials database as study 1566 (available at: https://www.cometinitiative.org/Studies/Details/1566).

scholarly journals Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Nicole Evangelidis ◽  
Benedicte Sautenet ◽  
Magdalena Madero ◽  
Allison Tong ◽  
Gloria Ashuntantang ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Replacement Therapy ◽  
Health Professionals ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Outcome Set ◽  
Kidney Replacement Therapy ◽  
Randomised Controlled ◽  
Stakeholder Consensus

Abstract Background Globally, over 1.2 million people die from chronic kidney disease (CKD) every year. Patients with CKD are up to 10 times more likely to die prematurely than progress to kidney failure requiring kidney replacement therapy. The burden of symptoms and impaired quality of life in CKD may be compounded by comorbidities and treatment side effects. However, patient-important outcomes remain inconsistently and infrequently reported in trials in patients with CKD, which can limit evidence-informed decision-making. The Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD) aims to establish a consensus-based core outcome set for trials in patients with CKD not yet requiring kidney replacement therapy to ensure outcomes of relevance to patients, caregivers and health professionals are consistently reported in trials. Methods SONG-CKD involves four phases: a systematic review to identify outcomes (domains and measures) that have been reported in randomised controlled trials involving adults with CKD who do not require kidney replacement therapy; stakeholder key informant interviews with health professionals involved in the care of adults with CKD to ascertain their views on establishing core outcomes in CKD; an international two-round online Delphi survey with patients, caregivers, clinicians, researchers, policy makers and industry representatives to obtain consensus on critically important outcome domains; and stakeholder consensus workshops to review and finalise the set of core outcome domains for trials in CKD. Discussion Establishing a core outcome set to be reported in trials in patients with CKD will enhance the relevance, transparency and impact of research to improve the lives of people with CKD. Trial registration Not applicable. This study is registered with the Core Outcome Measures in Effectiveness Trials (COMET) database: http://www.comet-initiative.org/Studies/Details/1653.

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