scholarly journals Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Inga Gruß ◽  
Gretchen M. McCreary ◽  
Ilya Ivlev ◽  
Mary Ellen Houlihan ◽  
Barbara P. Yawn ◽  
...  
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Research Agenda ◽  
Well Being ◽  
Research Network ◽  
Community Research ◽  
Baseline Survey ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Survey Responses

Abstract Background To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to people living with COPD and caregivers’ suggestions for research. Methods Adults with COPD and caregivers who are members of the COPD Patient-Powered Research Network (PPRN) provided suggestions for COPD-related research through a self-administered, online survey. These responses were analyzed with a content analysis approach: domains for categorizing all survey responses were created, then all responses were categorized independently by a group of researchers, then these categorizations were adjudicated, and finally a density map was created that represented the number of responses in each of the domains. Results At the time of analysis, 6157 adults had fully completed the baseline survey. Survey responses were categorized across seven domains as follows: 22.5% of all responses fell into the domain family/social/community research, 20.8% of all responses fell into the domain well-being, 15% of all responses fell into the domain curative research, 14.6% of all responses fell into the domain biomedical therapies, 10.5% of all responses fell into the domain policy concerns, 6% of all responses fell into the domain holistic therapies and 10.7% of all responses fell into the domain ambiguous comments that could not be translated into concrete research topics. Conclusion Using qualitative open-ended survey responses from the COPD PPRN registrants, we were able to identify six key domains of research about COPD that are considered most important by patients. These domains differ in content from prior scientist-led efforts to develop priorities for COPD research, demonstrating the ongoing importance of involving patients and their caregivers in determining research priorities. The results suggest the field can more closely align research efforts to patient priorities by considering the identified domains.

scholarly journals The observational, cross sectional study to assess quality of life on patient suffering from chronic obstructive pulmonary disease in tertiary care hospital

2020 ◽  
Vol 9 (1) ◽  
pp. 162
Author(s):  
Kavita S. Joshi ◽  
Prasad R. Amrale ◽  
Sagar S. Ahire
Keyword(s):  
Quality Of Life ◽  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Well Being ◽  
Health Improvement ◽  
Chronic Obstructive ◽  
Care Hospital ◽  
Obstructive Pulmonary Disease ◽  
The Impact

Background: Chronic obstructive pulmonary disease (COPD) patients often present considerable individual medical burden in their symptoms, limitations, and well-being that complicate medical treatment. Quality of life (QOL) is an important aspect for measuring the impact of chronic diseases. HRQOL measurement facilitates the evaluation of efficacy of medical interventions and also the detection of groups at risk of psychological or behavioural problems.Methods: COPD patient attending the OPD/IPD are screened as per inclusion and exclusion criteria. After obtaining a written informed consent of eligible patient, they were enrolled in the study. QOL of patient is assessed based on a set of questionnaire i.e. COPD Assessment Test™ (CAT). The questionnaire was translated to Hindi and Marathi. Socio demographic variable like age, sex, education occupation and income are also collected. All 8 questions related to health-improvement and management of COPD. CAT scores were given to each question according to the level of impact.Results: In the total score of CAT we observed that there were 2.04% patients with very good QOL, 25.51% with good QOL, 61.22% with moderate QOL and 11.22% with poor QOL.Conclusions: We conclude that the quality of life is moderate in larger number of patient’s population. The most affected domain was the patient’s energy level. The patients enrolled had COPD from long period of time which might have affected their answer because they have been habitual with the difficulties arising from COPD.

scholarly journals Recommendations for Developing Support Tools With People Suffering From Chronic Obstructive Pulmonary Disease: Co-Design and Pilot Testing of a Mobile Health Prototype

10.2196/16289 ◽  
2020 ◽  
Vol 7 (2) ◽  
pp. e16289
Author(s):  
Alan Davies ◽  
Julia Mueller ◽  
Jean Hennings ◽  
Ann-Louise Caress ◽  
Caroline Jay
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Health Care Professionals ◽  
Experience Sampling ◽  
Well Being ◽  
Mobile App ◽  
Lessons Learned ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
App Development

Background Gaps exist between developers, commissioners, and end users in terms of the perceived desirability of different features and functionalities of mobile apps. Objective The objective of this study was to co-design a prototype mobile app for people with chronic obstructive pulmonary disease (COPD). We present lessons learned and recommendations from working on a large project with various stakeholders to develop a mobile app for patients with COPD. Methods We adopted a user-centered, participatory approach to app development. Following a series of focus groups and interviews to capture requirements, we developed a prototype app designed to enable daily symptom recording (experience sampling). The prototype was tested in a usability study applying the think aloud protocol with people with COPD. It was then released via the Android app store, and experience sampling data and event data were captured to gather further usability data. Results A total of 5 people with COPD participated in the pilot study. Identified themes include familiarity with technology, appropriate levels for feeding back information, and usability issues such as manual dexterity. Moreover, 37 participants used the app over a 4-month period (median age 47 years). The symptoms most correlated to perceived well-being were tiredness (r=0.61; P<.001) and breathlessness (r=0.59; P<.001). Conclusions Design implications for COPD apps include the need for clearly labeled features (rather than relying on colors or symbols that require experience using smartphones), providing weather information, and using the same terminology as health care professionals (rather than simply lay terms). Target users, researchers, and developers should be involved at every stage of app development, using an iterative approach to build a prototype app, which should then be tested in controlled settings as well as in the wild (ie, when deployed and used in real-world settings) over longer periods.

scholarly journals The ties that bind us: how existing relationships, health and gender shape family care in chronic obstructive pulmonary disease

2012 ◽  
Vol 2 (1) ◽  
pp. 6 ◽  
Author(s):  
Janice G. Gullick ◽  
M. Colleen Stainton
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Family Relationships ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
The Impact

Chronic obstructive pulmonary disease (COPD) changes family roles and relationship dynamics and the experience of the disease is influenced by family functioning. Merleau- Ponty&rsquo;s existential philosophy of the body provided the framework for this Heideggerian phenomenological inquiry. Fifteen people with COPD and 14 family members engaged in 58 semi-structured interviews either face-to-face or by telephone. This study identified a difference in the essence of the lived experiences between male and female carers, and between spousal and non-spousal carers in relation to severe COPD. Previous reciprocity framed the level of acceptance of the caring role and perception of care burden. The stories highlight the self-perceived need for women carers to be <em>conscious micro-managers</em> of illness. Male family members would care alongside, lending support and caring in a reactive way as specific needs or crises arose. Caring in COPD required a <em>binding vigilance</em>; a constant need of the carer to monitor the physical and emotional well-being of the sick person that bound them emotionally and cognitively to the task of caring. Carers were the managers of crises and families cared from a perspective of possible death. Family was perceived as the best thing in life. Health professionals should consider the influence of gender, family relationships and the impact of reciprocity when planning support for family caregivers. Further research is required to identify the similarities and differences in family caring between COPD and other chronic illnesses, and to further understand the specific needs of male carers.

scholarly journals Relaxation Techniques for People with Chronic Obstructive Pulmonary Disease: A Systematic Review and a Meta-Analysis

2015 ◽  
Vol 2015 ◽  
pp. 1-22 ◽  
Author(s):  
Eleonora Volpato ◽  
Paolo Banfi ◽  
Sheena Michelle Rogers ◽  
Francesco Pagnini
Keyword(s):  
Quality Of Life ◽  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Relaxation Training ◽  
Meta Analysis ◽  
Well Being ◽  
Chronic Obstructive ◽  
Relaxation Techniques ◽  
Obstructive Pulmonary Disease

Introduction. Chronic Obstructive Pulmonary Disease (COPD) people suffer from severe physical impairments, which often elicit significant psychological distress and impact their quality of life. This meta-analysis aimed to assess evidence from the scientific literature on the effects of relaxation techniques.Methods. We investigated 9 databases to select 25 RCTs. Studies included both inpatients and outpatients with COPD. Both respiratory and psychological outcomes were considered.Results. Relaxation techniques showed a little positive effect on the value of the percentage of predicted FEV1(d=0.20; 95% Cl: 0.40–−0.01) as well as a slight effect on levels of both the anxiety (d=0.26; 95% Cl: 0.42–0.10) and depression (d=0.33; 95% Cl: 0.53–0.13). The higher effect size was found in the quality of life value (d=0.38; 95% Cl: 0.51–0.24). The assessed quality of the studies, based on the PEDro Scale, was generally medium/high.Conclusion. Relaxation training can have a moderate impact on both psychological well-being and respiratory function, resulting in noticeable improvements in both. Although higher quality research is required, our results sustain the importance of relaxation techniques as a tool to manage COPD.

scholarly journals Recommendations for Developing Support Tools With People Suffering From Chronic Obstructive Pulmonary Disease: Co-Design and Pilot Testing of a Mobile Health Prototype (Preprint)

2019 ◽  
Author(s):  
Alan Davies ◽  
Julia Mueller ◽  
Jean Hennings ◽  
Ann-Louise Caress ◽  
Caroline Jay
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Health Care Professionals ◽  
Experience Sampling ◽  
Well Being ◽  
Mobile App ◽  
Lessons Learned ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
App Development

BACKGROUND Gaps exist between developers, commissioners, and end users in terms of the perceived desirability of different features and functionalities of mobile apps. OBJECTIVE The objective of this study was to co-design a prototype mobile app for people with chronic obstructive pulmonary disease (COPD). We present lessons learned and recommendations from working on a large project with various stakeholders to develop a mobile app for patients with COPD. METHODS We adopted a user-centered, participatory approach to app development. Following a series of focus groups and interviews to capture requirements, we developed a prototype app designed to enable daily symptom recording (experience sampling). The prototype was tested in a usability study applying the <i>think aloud</i> protocol with people with COPD. It was then released via the Android app store, and experience sampling data and event data were captured to gather further usability data. RESULTS A total of 5 people with COPD participated in the pilot study. Identified themes include familiarity with technology, appropriate levels for feeding back information, and usability issues such as manual dexterity. Moreover, 37 participants used the app over a 4-month period (median age 47 years). The symptoms most correlated to perceived well-being were <i>tiredness</i> (<i>r</i>=0.61; <i>P</i>&lt;.001) and <i>breathlessness</i> (<i>r</i>=0.59; <i>P</i>&lt;.001). CONCLUSIONS Design implications for COPD apps include the need for clearly labeled features (rather than relying on colors or symbols that require experience using smartphones), providing weather information, and using the same terminology as health care professionals (rather than simply lay terms). Target users, researchers, and developers should be involved at every stage of app development, using an iterative approach to build a prototype app, which should then be tested in controlled settings as well as <i>in the wild</i> (ie, when deployed and used in real-world settings) over longer periods.

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