COPD National Action Plan:
Community Action Tool
Discover the progress the COPD community has made toward implementing the goals and objectives in the COPD National Action Plan.

COPD Caregiver’s Toolkit


Organization: Respiratory Health Association
Start Date: September 2018
End Date: Ongoing
Primary Goal: Goal 1: Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD.
Secondary Goal(s):
  • Goal 2: Improve the prevention, diagnosis, treatment, and management of COPD by improving the quality of care delivered across the health care continuum.
  • Increase public awareness of the risk factors and symptoms of COPD so that earlier diagnosis of symptomatic individuals becomes the norm
  • Increase the effectiveness and variety of outreach communication campaigns and activities that utilize evidence-based approaches to raise awareness of COPD, particularly among those at high risk, and help people diagnosed with COPD manage the disease
  • Develop, disseminate, and maintain unified, multidisciplinary, and patient-centric national guidelines for COPD that are accessible and easy to follow
  • Develop and encourage the use of a written, patient-centric COPD management plan tool, with appropriate cultural and health literacy considerations, which can be customized with input from the patient's health care provider(s)
  • Improve access to care for people with COPD, particularly for those in hard-to reach areas
Collaboration: Northwestern University, Illinois Institute of Technology
Activity Type: Patient education, Material or product

Activity Description

While much attention has been paid to the medical and supportive needs of people living with COPD, less time has been devoted to considering and addressing the needs of informal caregivers. In response to this need, RHA developed The COPD Caregiver’s Toolkit, a comprehensive, user-centered caregiver support tool that is grounded in health theory. The Toolkit is organized into five sections to address different needs faced by caregivers, and it includes templates and checklists to promote interaction and illustrations to highlight COPD management techniques and medication use.


General Audience: Patients, Caregivers or family members, Health professionals, General Public
Focused Audience: n/a
Program Reach: National
Type of Area: Urban, Suburban, Rural
Setting: Community, Home

Cost and Funding Sources

RHA currently has the Toolkit for sale on its website for $20/Toolkit. The costs of printing the Toolkit vary on the amount of Toolkits ordered from the printer. When the pilot study of the Toolkit was running, RHA had funding from a LMBB grant to print and distribute 350 Toolkits and test the acceptability of the Toolkit. RHA used $8,190.00 of the grant to get 350 Toolkits printed. Health systems that have been interested in using the Toolkit have purchased copies, including Advocate Aurora Healthcare and University of Chicago Medicine.

Impact Analysis

During the initial grant period, 95 Toolkits were distributed to informal caregivers. Since the funding period, Advocate Aurora Hospital group has ordered 1,500 Toolkits to distribute in outpatient COPD clinics to help informal caregivers with COPD management. University of Chicago Medicine has ordered 50 Toolkits for community health workers to use, and four Toolkits have been purchased from our online store.

During the pilot study on the acceptability of the Toolkit, RHA found that 68% of caregivers who participated in the study found the Toolkit helpful from the perspective of someone caring for a person with COPD, and 92% of caregivers would recommend the Toolkit to someone else.

Advice or Lessons Learned

When surveying this population, it is good to send out paper and electronic surveys and provide follow-up calls for people to send in their electronic surveys. When working with academic institutions, it is good to start early to get IRB approval (if you don’t have your own IRB to work with).

Contact Information

Erica Salem
Respiratory Health Association
Senior Director of Strategy, Programs & Policy