Evaluation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education materials in local health departments (Brimmer et al., 2018)

[Dolphin]

I'm involved in various awareness-raising initiatives aimed at both the general public and health/medical professionals so thought there might be something of interest in this. Unfortunately, I found very little of interest and I imagine most people could find better things to spend their time reading. But who knows, I'm open to correction.

https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1524216

Journal
Fatigue: Biomedicine, Health & Behavior
Volume 6, 2018 - Issue 4

Articles
Evaluation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education materials in local health departments
Dana J. Brimmer, Ashley Hagaman, Charlotte Campbell, Joanne Hsu & Jin-Mann S. Lin
Pages 193-207 | Received 18 Jun 2018, Accepted 11 Sep 2018, Published online: 26 Sep 2018

• https://doi.org/10.1080/21641846.2018.1524216

ABSTRACT
Purpose: To identify methods used by local health departments (LHDs) for reaching providers and the public with information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: During 2009–2012, we conducted LHD outreach in three stages: 1) materials needs assessment with LHDs in 18 states – 85% of 90 targeted LHDs; 2) dissemination to LHDs in 15 states – distributed 67,850 copies of ME/CFS printed materials to 121 LHDs; and 3) follow-up calls with LHDs 6 months after dissemination – 75% of 118 LHDs. The follow-up interview included 18 questions about ME/CFS material use, perception, and knowledge.

Results: Ninety-three percent of LHDs had no ME/CFS program or materials. ME/CFS was not rated a public health priority, yet 90% were interested in receiving ME/CFS materials. Of 89 LHDs completing the follow-up interview, 50% were in rural areas, 74% had heard about ME/CFS, and 80% had used the CDC-provided ME/CFS materials. LHDs incorporated these ME/CFS materials into existing programs and dissemination formats (e.g. kiosks and printed materials were preferred). Past use of provided materials did not impact LHDs’ plan to use materials in the future. Regardless of prior ME/CFS awareness, LHDs rated ME/CFS as an important health issue.

Conclusions: This paper highlights criteria to consider when developing outreach methods for LHDs including materials and dissemination. We learned materials should be concise and easily transportable to facilitate use in the community. Materials and outreach methods might require tailoring to LHDs as competing health priorities was the most common reason given by LHDs for not using ME/CFS materials.

KEYWORDS: ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome, education materials, outreach, health department

 

[Dolphin]

Activities to promote ME/CFS health education have been primarily focused on two types of target audiences: the general public and healthcare providers. In the United States, healthcare provider activities have included exhibiting at professional conferences [5], offering continuing medical education (CME) [5], and conducting a Train-the-Trainer program [6]. For the public, a national campaign to raise awareness was conducted using a traveling photo exhibit, public service announcements, and the Internet [7,8]. At the government level, the Centers for Disease Control and Prevention (CDC) manages a ME/CFS website and offers resources for providers and the public (www.cdc.gov/cfs). In continuing efforts to educate the public about ME/CFS as an important public health issue, an external peer review panel to the CDC ME/CFS Research Program recommended developing partnerships with local health departments (LHDs) to reach more providers and the public [9].

 

[Dolphin]

I think these are two of the three items

The ME/CFS educational materials distributed in this project included a Health and Human Services (HHS) ME/CFS booklet, a healthcare provider (HCP) resource guide, and a Toolkit available in both English and Spanish. In general, HHS information booklets provide background information and resources about diseases. The HHS ME/CFS booklet followed this format with information on epidemiology, ME/CFS background, symptoms, causes, and management. The HCP resource guide was developed and targeted to HCP. It is a tri-fold laminated guide that can be carried in coat pockets and is a quick reference to ME/CFS symptoms, algorithm for clinical assessment, lab tests, and management. The Toolkit consisted of a folder with different one-page topics that were meant to be a quick resource to ME/CFS assessment, symptoms, and management. CDC worked jointly with patient groups and clinicians on content development.

 

[Dolphin]

Here are some other CDC files I have from the period

 

[Dolphin]

Table 2. How local health departments used the ME/CFS educational materials.


Distribution of materials

Directly to individuals:
Public – patients, clients, seniors
Healthcare professionals – staff, public health nurses, doctors,
and other healthcare providers


Third party source
Organized events – health fairs, conferences, WIC events
Organizations – medical clinics, hospitals, senior centers,
libraries, waiting rooms, doctor’s office
Stationary stands – bulletin boards, bookshelves, health kiosks,
display boards, brochure stands

Individual responses are given

 

[Dolphin]

LHDs prioritize their department programing based on disease prevalence and community health needs. Public health officialsmust often direct resources towards community and county priorities and these often fall in areas of heavy disease burden, for example diabetes and heart disease. Therefore, even though interest about ME/CFS was high among LHDs in this project, the lower prevalence of ME/CFS compared with other chronic illnesses such as diabetes and heart disease may have resulted in lowering the priority of ME/CFS. Thus, ME/ CFS educational programs may want to consider working with other illness and disease organizations as a method to reach more public health officials in LHDs.

 

[Dolphin]

Conclusions

Through the conduct of this needs assessment and subsequent evaluation, the CDC ME/ CFS program learned several lessons that may be useful for other organizations developing health education materials for LHDs. Materials may need to be items that can be physically distributed as much of the health education work in LHDs is done in person through a health department employee or third party source. Materials should be concise (i.e. no longer than one page), and easily transportable since health department staff conduct education activities in the community and outside of the health department building (e.g. health fairs, schools, hospitals, etc.). At the time of this project, LHDs had low adoption rates of social media tools, especially in rural areas [15], but health information on mobile applications or social media only continues to grow. LHDs may benefit from using both print materials and social media when possible.

I'm not sure the data from this study really proves that material should be no longer than one page.

 

[Webdog]

The California Department of Public Health does not consider ME/CFS education a priority. Once they understood ME/CFS is not communicable or caused by an addiction, they really had no interest.

Perhaps if ME/CFS were caused by climate change, they'd pay attention.

Edit: I was attempting to get the California Department of Public Health to provide ME/CFS educational materials similar to the New York State Department of Health.