Form 0920-18AFX Focus Group Discussion Guide

Attachment 8. Focus Group Discussion Guide

Form Approved

OMB No. 0920-XXXX

Exp. Date xx/xx/20xx

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INTRODUCTION

Good morning/afternoon. My name is [NAME] and I am a [TITLE] at the NORC Walsh Center for Rural Health Analysis. We have been contracted by the Centers for Disease Control and Prevention (CDC) to conduct a formative research study exploring clinician experiences with the diagnosis, treatment, and management of traumatic brain injury (TBI) in rural settings. TBI refers to an alteration in brain function, or other evidence of brain pathology, caused by an external force. Symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. Symptoms include problems with thinking/memory, vision, balance, changes in moods/emotions, and sleep difficulties. For the purpose of this focus group, we want to hear about your experiences evaluating or treating someone with a mild TBI, often referred to as a concussion, at the time of their injury. The purpose of this focus group is not to test your knowledge of mild TBI. Rather, CDC is asking questions in order to determine the ways in which it can improve its assistance to providers working in rural areas.

To make sure that we will hear what everyone has to say today, we ask that you try to speak one at a time and refrain from having side conversations or from interrupting one another.

The Project Information Sheet we handed out includes some additional information about this project. It also includes contact information for our project director if you have any questions after we finish our discussion today, as well as contact information for the NORC Institutional Review Board Manager, if you have any questions about your rights as a research participant.

NORC would like to record this discussion in order to ensure our notes are as accurate and comprehensive as possible. We will delete the recording at the end of the project. Do you consent to have this discussion recorded?

[If all parties indicate “yes” then proceed, and continue to record the interview.]

[BEGIN RECORDING]

[If “no” then say: “That's fine. Please be patient as we take notes." Then, stop and delete the recording.]

Do you have any questions before we begin?

Discussion Guide

1. Overview of Traumatic Brain Injury in the Community

   1. Tell us about the risk of concussion or mild TBI in your patient population. How often do you assess a potential concussion or mild TBI in a month?

   2. What are the most common causes of mild TBI and concussion among residents in your community?

   3. How prepared do you feel to diagnose and manage patients with mild TBI with respect to the training you have received, opportunities for your continuing education, and the frequency with which you are able to treat concussion/mTBI in your patient population?

2. Challenges in Diagnosis

Moderator: First, we are interested in learning about your experience diagnosing mild TBI in your patient population.

1. What tools do you use to diagnose mild TBI?

2. What challenges or difficulties do you experience in diagnosing mild TBI? What is the primary challenge you face in diagnosing mild TBI? Prompts, if needed:

   1. Equipment (e.g., imaging, assessment tools)

   2. Staffing/Workforce/Barriers to making referrals

   3. Training/Continuing Education

   4. Patient perceptions or willingness to seek care (e.g., patients do not want to seek care, do not realize they are hurt, or cannot afford treatment)

   5. Other

3. Are any of these challenges or difficulties unique to diagnosis of mild TBI in children and adolescents?

4. How do you manage these challenges?

1. Challenges in Treatment/Management

Moderator: Now that we’ve discussed your experiences with diagnosis, let’s move on to your experiences with treatment and management of mild TBI after a confirmed diagnosis.

1. Are patients diagnosed with mild TBI treated and managed within your practice/organization or are they referred/transferred elsewhere?

   1. For patients treated locally: What challenges or difficulties do you face in treating and managing mild TBI? (e.g., training, staffing, systems of care, health insurance coverage, etc.). How are these challenges managed?

   2. For patients referred/transferred: We’re going to discuss patient challenges with follow up care in just a minute. The question we have now is what challenges or difficulties do you experience when referring/transferring these patients? (e.g., coordination with other providers, sharing information, patient’s out-of-pocket costs, health insurance coverage, out of network providers, etc.). How are these challenges managed?

1. Access to Care

Moderator: We want to learn more about the patient barriers to accessing care that you have observed in your community.

1. What, if any, are the patient barriers to obtaining initial care following a mild TBI? Prompts, if needed:

   1. Knowledge or understanding of TBI

   2. Transportation

   3. Cost of care/health insurance status (including out of network providers)

   4. Other

2. What, if any, obstacles do patients face during the recovery process for a mild TBI? Prompts, if needed:

   1. Knowledge or understanding of TBI and the recovery process

   2. Knowledge or understanding of TBI and the recovery process among employers, school personnel or coaches

   3. Distance to follow-up care

   4. Transportation

   5. Cost of treatment/health insurance status(including out of network providers)

6. Other

1. Challenges in Treatment/Management in Children

Moderator: Let’s talk specifically about the pediatric population in your community.

1. Some communities have adopted what are called “return to school” or “return to learn” policies or practices that are meant to help children and adolescents successfully transition back to school after experiencing a concussion or mild TBI. Do your local school districts or does your state have any return to school policies or practices following concussions for children?

   1. If yes, can you tell us about them?

2. Tell us about the processes you go through with children in regard to returning them to school after they have experienced a mild TBI.

1. Please tell me about interactions have you had with parents or educators about returning children to school after experiencing a mild TBI?

1. Tell us about the processes you go through with children in regard to returning them to playing sports after experiencing a concussion.

   1. How do you communicate with parents and coaches about this process?

1. Opportunities to Enhance TBI Diagnosis and Treatment/Management

Moderator: We have discussed the barriers and challenges. We would like to learn more about your thoughts about how to make mild TBI diagnosis, treatment, and management better for rural residents.

1. What mild TBI-related information would be helpful to improve patient knowledge and awareness of TBI in your community?

2. What clinical training/continuing education, if any, would be helpful to improve your mild TBI-related practice?

3. What kind of mild TBI training experiences have you found helpful? These can be informal or formal.

4. What other resources might be helpful to improve your mild TBI-related practice? Prompts:

   1. Clinical decision support tools

   2. Health insurance coverage information

   3. Other

5. What do you want the CDC to know about mild TBI in rural communities?

6. Is there any additional information about your experiences with mild TBI and concussions that you would like to share at this time?

Thank you for taking the time out of your schedule to speak with us today. The information you provided, and your experiences, will help inform CDC’s future efforts to decrease disparities related to the diagnosis, treatment, and management of TBI. We appreciate and value your contribution. Thank you.

Rural Disparities in Traumatic Brain Injury | 4