Eureka Build-a-thon


Proposal Status: 

B. Shoshana Zha, MD PhD

TEAM LEADER CONTACT:, #540-454-2779

Natalie Stumpf, MD, PGY-2
Jeff Tarnow, RCP—role: construction of form of the intervention
Vickie Jue, Pharm D—role: construction of form of the intervention
Isabella Cheng—role: construction of form of the intervention

Medicine, Division of Pulmonary, Critical Care, Allergy and Sleep Medicine

Impact of Patient Support Groups on Quality of Life in Patients with Non-Cystic Fibrosis Bronchiectasis (BronchConnect)

What impact does participation in a patient support group have on health care quality of life for patients living with non-cystic fibrosis bronchiectasis?

Bronchiectasis is a chronic disease marked by abnormally dilated and inflamed airways, resulting in chronic cough, recurrent infections, and even respiratory failure1,2. Noncystic fibrosis bronchiectasis (NCFBE) can stem from a variety of causes outside of cystic fibrosis, including ciliary dysfunction, autoimmune disorders, gastroesophageal reflux, and other mechanisms not yet fully understood3,4. Regardless of the underlying etiology, the focus of treatment is to inhibit a vicious cycle of infection, inflammation, mucus impaction, and worsening airway dilation 5 through aggressive airway clearance techniques and often repeated prolonged courses of antibiotics6,7. Acute bronchiectasis exacerbations can occur and cause progression of disease8. Moreover, a significant increase of NCFBE in the last few decades, up to 700 per 100,000 in those greater than age 65 in the United States9, combined with the chronic consequences of disease, has resulted in a large economic impact10. Both the disease manifestations and the treatments involved can have a significant impact on the quality of life for patients living with bronchiectasis. Chronic cough is embarrassing, limiting ventures outside the home, hours of airway clearance limits productivity, and fear of the unknown of the next infection and little understanding of the natural history of disease results in anxiety11,12. Patient support groups have been shown to improve understanding of disease, decrease anxiety, and build a sense of community in multiple chronic lung diseases such as chronic obstructive pulmonary disease (COPD)13 and pulmonary fibrosis14. However, there is no published study on the effect of support groups in NCFBE. We hypothesize participation of an accessible patient support group will improve quality of life in those living with NCFBE in the San Francisco Bay Area.  To study this, we will address the following aims:
AIM 1: Elucidate if an accessible patient support group improves health care quality of life in patients with NCFBE by tracking participation and validated survey responses of participants over time.
AIM 2: Determine if participation in a patient support group reduces bronchiectasis exacerbation rates in those living with NCFBE in the San Francisco Bay Area.

BronchConnect is a prospective cohort study of NCFBE patients who receive care at UCSF and seek participation in a patient support group using a repeated measures design.

Study Subjects: While the target population is all persons with bronchiectasis in the San Francisco Bay Area, those accessible to this study are only those who receive medical care at UCSF. We will restrict the population according to the following criteria:

  • Inclusion:
    •  >18 years of age
    • Diagnosis of NCFBE as confirmed by chest CT, ≥2 ICD 9 or 10 codes for bronchiectasis or bronchiectasis exacerbation (J47*, 494*, Q89.3, 759.3), and referring physician assessment
  • Exclusion:
    • Inability to provide informed consent
    • Inability to complete questionnaires independently
    • HIV positivity
    • Solid-organ transplant
    • Cystic fibrosis

Sample Size:
Our initial work will pilot the intervention of support group and method of metrics. We aim to enroll a minimum of 30 participants. With a proportion of positive results estimated at 0.33 based from previous studies15 and a confidence level of 95%, we can assert that the proportion of improvement of both symptoms and exacerbation rates would be situated between 22.6 and 59.4%16.
Approach: Potential participants will be referred from UCSF’s Lung Health Center. Medical records will be briefly reviewed for inclusion and exclusion criteria prior to participants approached for introduction and informed consent. In addition, HIPAA will be reviewed with each potential participant given the nature of the intervention in a shared space. After informed consent, participants will complete a questionnaire that is combined for both valid questions on bronchiectasis health care quality of life and symptoms, as well as novel questions to address the role of the support group in terms of most useful topics, understanding of treatments, and reasons for attending sessions (or not attending). Medical records will be reviewed to quantify number of bronchiectasis exacerbations in the previous 1 year, most recent pulmonary function tests (PFTs), chest CT interpretation, comorbidities and current medications.
The patient support group will meet over Zoom monthly. Sessions will be a mix of featured speakers presenting on topics of relevance to the community (such as new research, supplemental oxygen, pulmonary rehab, understanding the underlying mechanisms of bronchiectasis, airway clearance techniques) as well as open forums for patients to discuss their experiences. Questionnaires will be repeated at 3, 6, and 12 months after initiation of the support group. Further, at 12 months, the medical record will be re-reviewed for PFT trend, bronchiectasis exacerbation rate, medications, and hospital encounters.

BronchConnect is a feasible study from multiple perspectives. First, a subspecialty clinic for NCFBE patients exists within the Lung Health Center, providing the opportunity to obtain the sample size and prospective method proposed. Second, 2 other sustained patient support groups exist at the Lung Health Center (Cystic Fibrosis and Interstitial Lung Disease) providing a foundation of best practices. Third, the key stakeholders from team members in the clinic, patients, and family have voiced desire for this intervention to be implemented. Lastly, Dr. Natalie Sumpf is committed to the initiation and sustainability of this project for the patients and career development. Using Eureka would make this study further feasible because of the survey-based nature of the project. Eureka would make it easier to build the survey in a HIPAA-compliant manner, send patients survey reminders, and to enable survey participation, especially since the patient support group will be hosted virtually over Zoom and participants will less commonly be seen face to face during these time periods. Further, potential expansion of the study aims if Eureka is implemented could occur, including tracking pulse oximeter data to assess participants’ oxygen levels, heart rate to assess activity abilities over time, and cough monitors for assessment of changes in exacerbation risks and objective data of symptom control.

This project is currently funded by a Nina Ireland and generous donation. By increasing our capacity in this project through Eureka, the data will be used to apply for funding through foundation grants with an ultimate aim of a multicenter randomized control trial that would be proposed for R level funding.

Natalie Stumpf is a current second year Internal Medicine resident in pursuit of a career in clinical research and pulmonology. This project is her independent development and her first independent work. This project will be conducted in parallel to further class work and mentorship to further her short-term goals of learning mechanisms of research. It will provide a foundational opportunity to learn the fundamentals of project development, implementation, and data analysis, which will establish a groundwork for her long-term career goals including pulmonary fellowship and academic medicine. The opportunity to use research tools such as Eureka would not only make the project more feasible as outlined above, but also form a cornerstone part of the educational experience.

Patients currently receiving care at the Lung Health Center are requesting a patient support group. In addition, we are aware of similar requests through online forums and at international meetings where patient representatives participate. We believe patient support groups would have a significant impact on patients’ journeys to understanding and controlling symptoms of their condition. The overall goal of our work is to enable patients to live better with NCFBE through understanding their condition and having more control over management. Being able to study the impact of participation via qualitative and objective findings would provide evidence to initiate such groups throughout the country.



1.        Dupont M, Gacouin A. Survival of Patients With Bronchiectasis After the First ICU Stay for Respiratory Failure *. Published online 2004:1815-1820. doi:10.1378/chest.125.5.1815

2.        Keir HR, Chalmers JD. Pathophysiology of Bronchiectasis. Semin Respir Crit Care Med. 2021;42(4):499-512. doi:10.1055/s-0041-1730891

3.        Aksamit TR, O’Donnell AE, Barker A, et al. Adult Patients With Bronchiectasis A First Look at the US Bronchiectasis Research Registry. Chest. 2017;151:982-992. doi:10.1016/j.chest.2016.10.055

4.        Chandrasekaran R, Mac Aogáin M, Chalmers JD, Elborn SJ, Chotirmall SH. Geographic variation in the aetiology, epidemiology and microbiology of bronchiectasis. BMC Pulm Med. 2018;18(1). doi:10.1186/s12890-018-0638-0

5.        Cole PJ. Inflammation: A Two-Edged Sword-the Model of Bronchiectasis.; 1986.

6.        Hill AT, Sullivan AL, Chalmers JD, et al. British thoracic society guideline for bronchiectasis in adults. Thorax. 2019;74. doi:10.1136/thoraxjnl-2018-212463

7.         Hill AT, Haworth CS, Aliberti S, Barker A, Blasi F, Boersma W, Chalmers JD, De Soyza A, Dimakou K, Elborn JS, Feldman C, Flume P, Goeminne PC, Loebinger MR, Menendez R, Morgan L, Murris M, Polverino E, Quittner A, Ringshausen FC, Tino G, Torres A, Vendrell M, Welte T, Wilson R, Wong C, O'Donnell A, Aksamit T; EMBARC/BRR definitions working group. Pulmonary exacerbation in adults with bronchiectasis: a consensus definition for clinical research. Eur Respir J. 2017 Jun 8;49(6):1700051. doi: 10.1183/13993003.00051-2017. PMID: 28596426.

8.        Polverino E, Goeminne PC, McDonnell MJ, et al. European Respiratory Society guidelines for the management of adult bronchiectasis. Eur Respir J. 2017;50:1700629. doi:10.1183/13993003.00629-2017

9.        Henkle E, Chan B, Curtis JR, Aksamit TR, Daley CL, Winthrop KL. Characteristics and Health-care Utilization History of Patients With Bronchiectasis in US Medicare Enrollees With Prescription Drug Plans, 2006 to 2014. Chest. 2018;154(6):1311-1320. doi:10.1016/j.chest.2018.07.014

10.      Goeminne PC, Hernandez F, Diel R, et al. The economic burden of bronchiectasis - Known and unknown: A systematic review. BMC Pulm Med. 2019;19(1). doi:10.1186/s12890-019-0818-6

11.      Lavery K, O’Nelll B, Elsborn JS, Relly J, Bradley JM. Self-management in bronchietasis: The patient’s perspective. Eur Respir J. 2007;29(3):541-547. doi:10.1183/09031936.00057306

12.      Delestre-Levai I, Aliberti S, Almagro M, et al. Patients’ perspectives on bronchiectasis: findings from a social media listening study. ERJ Open Res. 2021;7(3). doi:10.1183/23120541.00096-2021

13.      Lenferink A, van der Palen J, Effing T. The role of social support in improving chronic obstructive pulmonary disease self-management. Expert Rev Respir Med. 2018;12(8):623-626. doi:10.1080/17476348.2018.1489723

14.      Van Manen MJG, Geelhoed JJM, Tak NC, Wijsenbeek MS. Optimizing quality of life in patients with idiopathic pulmonary fibrosis. Ther Adv Respir Dis. 2017;11(3):157-169. doi:10.1177/1753465816686743

15.      Alcazar B, Lucas P De, Soriano JB, et al. The evaluation of a remote support program on quality of life and evolution of disease in COPD patients with frequent exacerbations. BMC Pulm Med. Published online 2016:1-12. doi:10.1186/s12890-016-0304-3

16.      Kohn MA U of CSF, Senyak J U of CSF. Sample Size Calculators. Published 2021.

Supporting Documents: 


Collecting patient-reported outcomes over time is a very good use of Eureka, and I also like the future possibilities of collecting information from O2sat monitors and such.  If we could use an existing integration with an iHealth product (, would you be able to purchase devices for your participants?

I take it this is primarily a descriptive study - any consideration of enrolling controls that are not in a Support Group?  Perhaps you could find some similar patients from a Facebook Group or something?  They might not be entirely comparable, but it could be relatively cheap to find and enroll them if you don't need to see them in person.

Thank you for the thought of control arms for this project. It would indeed make our study stronger. For Aim2, this is feasible (number of exacerbation rates) - we will use the EMR to pull antibiotic prescriptions associated with an encounter coded for respiratory infection/disease for patients at UCSF-Parnassus with a diagnosis of bronchiectasis (excluding patients with cystic fibrosis). To remove confounding of subspecialty care, those who are seen in the Bronchiectasis/NTM clinic will be excluded. Antibiotic prescriptions will serve as a proxy for exacerbation rates, and will be compared to the antibiotic prescription rates of those in our intervention cohort. For Aim1 (quality of life as demonstrated by questionnaire responses), we ultimately decided to use patients’ “before” questionnaires as their own controls and trend responses over time to assess impact of the intervention. All patients in clinic will be invited to participate in the group, and using clinic patients who choose not to participate as the control introduces more confounders. We also thought about inviting patients in Facebook groups or other online support systems to participate as a control, but on review decided a Facebook group is in a way its own support group (although not mediated by the healthcare system), so would also introduce confounding variables and not serve as a true control.

Thank you providing a link to this oximeter - we are currently applying for more funding and can ascertain if we can add synchronizing home pulse oximeters pending funding!

One more question - do you have some engaged patients who could give feedback on design of the study?

Thank you for bringing this up! It is a wonderful idea to invite patients to give feedback on the design, and was something we briefly considered prior to submission. We are in the process of inviting two at the moment!

  • I agree with Mark about considering a potential control group.
  • What processes will be in place to ensure you achieve good retention and completion rates of follow-up surveys? Will there be compensation for participants? 
  • How will you address potential challenges of selection, where the people who may be feeling the best are the ones who are interested / able to participate?

Thank you for these questions! We will be compensating patients for their time participating in the surveys. Current limitations of our design include the following: 1) Questionnaire and moderation will be English language only, although the next step for future iterations would be to include Cantonese and Spanish versions. 2) Since sessions will be held on Zoom, technical access could be a limiting factor; to mitigate this there will be IT support through the clinic. On the other hand, online-only participation could also expand access to the group to those patients who are not feeling well since they would not be required to come in person for group sessions.

I also wonder whether collecting additional objective measures like physical activity/steps would be useful - this can also be accomplished with Eureka. Eureka also has the ability to pull EHR records via FHIR, which could be useful for this study.

Thank you for sharing this well developed proposal. Will you be adding any screening measures related to mental health to your questionnaire on quality of life, symptoms, or novel questions about the role of the support group? And have you considered evaluating strucured data on mental health from the EHR pre- and post-intervention (e.g. GAD-7 or PHQ-9 if populated and/or relevant ICD codes)? Thanks for any additional information you can provide.

Thank you for asking about mental health screening! We have actually been discussing using GAD-7 as part of the initial survey, in addition to focused bronchiectasis quality of life questions. Pulling in GAD-7 or PHQ-9 from the EHR if already populated is a great idea and could definitely add to the study.