Improving the Patient Experience with Migraine Camp, a one-day group intervention for adolescents with chronic headache and their parents

Abstract

Though chronic migraine is actually common in adolescents, living with constant headache can be isolating for both patients and their families. As an outgrowth of clinical care, we developed the Miles for Migraine Youth Camp, a recurring one day event for adolescents with chronic headache and their parents. Migraine Camp was developed to provide expanded headache education, teach coping strategies for living with chronic pain, and encourage development of a supportive community for adolescents living with chronic headache disorders and their families. The creation and curriculum of the Camps at the University of California San Francisco (UCSF) and Children’s Hospital of Philadelphia (CHOP) are described in this manuscript, along with patient and caregiver feedback.

Overall, feedback was positive. Teens reported feeling less isolated and more prepared to cope with headaches using new strategies. Both patients and caregivers consistently described benefit from connecting with others who experience similar challenges. The Migraine Camp teams at both institutions found it feasible to conduct the Camps 1–2 times per year using existing resources, but noted that to scale it to a more regular event additional administrative and/or volunteer support would be needed. In summary, the experience has been positive for patients, caregivers, and staff, and we hope that this manuscript can serve as a “how to” model for similar events at other institutions.

INTRODUCTION

As the readers of this journal know, migraine is common and disabling^1,2. While treating adolescents with chronic, refractory headache at our respective subspecialty tertiary pediatric headache clinics, several themes were recognized. First, evidence-based treatment options in youth remain limited. While many adolescents will respond to first-line preventive medications or even placebo when coupled with consistent education about headache hygiene and evidence-based acute migraine treatment³, approximately a third do not respond to this first-line treatment^4–8. Even among adolescents with chronic migraine receiving combined therapy with amitriptyline and cognitive behavioral therapy (CBT)⁹, 53% did not reach the goal of ≤4 headaches per month after 20 weeks. Moreover, those with daily, continuous headache have historically been excluded from both pharmacologic and behavioral treatment trials, despite being the population with highest burden and most need for effective treatment¹⁰. Second, many teenagers with difficult headache disorders can become socially isolated due to their high headache related disability¹¹. Third, the burden of adolescent headache can also impact other family members^12–16, and family function seems to affect a child’s experience of headache¹⁷. Fourth, it is important equip teenagers with the skills they need in order to transition successfully into the adult health care environment (summarized in Table e1).^18–20

To address these issues, we developed a comprehensive one-day intervention, the Migraine Youth Camp (supported by Miles for Migraine), aimed at providing headache education, social connection, coping strategies, exposure to non-pharmacological approaches, and health-care transitions skill building for teens with headaches and their families. These Migraine Camps have now been successfully implemented at our two pediatric headache programs.

Our goal in this paper is to summarize our experience to date in the hopes that disseminating this information will generate interest in expanding the Camps to other locations. In this manuscript we will: (1) review the evolution of Migraine Camps, (2) outline our comprehensive curriculum designed for teens with headaches and their caregivers, (3) report participant feedback, (4) discuss implications for practice and research, (5) invite others to utilize or adapt our materials to best meet the needs of their patients and families.

DEVELOPMENT OF MIGRAINE CAMPS:

The First Event:

The initial Migraine Youth Camp (Migraine Camp) was developed in 2014 at the University of California San Francisco (UCSF) Child & Adolescent Headache Program in collaboration with Miles for Migraine. Miles for Migraine is a nonprofit organization which hosts races, educational events and support groups around the country for people with migraine and other headache diseases. Pediatric headache providers (MD and RN) designed the initial program based upon their clinical experience to include sessions on: migraine pathophysiology, cognitive behavioral therapy, yoga, biofeedback, art and group sessions (one for adolescents and one for parents) to discuss shared concerns and problem-solving strategies.

Refining the program and expanding to a second site:

Participant and parent feedback from the initial UCSF Camp was used to revise the Camp program—both for content and for pacing. Based on parental feedback, a session on navigating school-related concerns (both high school and the college application process) was added. A second addition was a panel discussion in the afternoon featuring a teen who had (or had had) chronic headache, a parent, a nurse, and a pediatric headache neurologist. In 2016, the Children’s Hospital of Philadelphia (CHOP) Headache Program started offering Camps by adapting the UCSF Camp model and adding parallel support sessions for parents, mixed caregiver-teen groups, and transition-focused groups modeled after CHOP’s disease-specific transition event model, REACH (Rapport, Empowerment, Advocacy through Connections and Health). CHOP’s events also include staff and patients from the Headache Program at Nemours/Alfred I. duPont Hospital for Children. Current camp curriculum will be described below in Results.

Current Camp Execution:

There have now been a total of 14 events over the 2 institutions, 1–2 per year since 2014 at UCSF and since 2016 at CHOP. Modifications have been made after each event as a result of feedback from patients, families, and staff. The description below predominantly describes the program offered at CHOP, though both centers offer similar programs.

Planning and advertisement typically begin four to six months in advance to ensure support from staff and participation from families. Camp is publicized through the local pediatric Headache Program and Miles for Migraine websites, and clinic visits. In clinic we specifically mention the event to patients who have chronic, refractory headaches with high levels of disability or feelings of isolation, and who have not attended in the past. At CHOP, a few months before each event the hospital analytics and reporting team generates a list of emails for the parents of all patients with chronic headaches who have been seen in Neurology in the past 2 years. The email is sent from a Headache Program email address with all names blind copied to ensure privacy, and most attendees sign up within a few days of receiving that email. We typically cap planned attendees at ~25 teens plus their parents per event, anticipating that ~20 patients and ~25 parents will show on the day of the event.

Events have been held on a Saturday, Sunday, or weekday holidays to prevent missed school/work days. Event staff are offered an honorarium from Miles for Migraine; most hospital staff waive that and instead volunteer their time or take an alternate day off in place of the worked weekend day or holiday. There is no cost to families, though donations are accepted. There are often several families who confirm that they will attend but do not show, so we have considered charging a nominal fee to try to deter this. Parking is permitted in hospital garages, and parking passes are provided. Facilities include at least 1 large and 2 smaller meeting rooms, and a quiet space for rest if needed. Water, snacks, and meals are served throughout the Camp day, with options for patients/parents with dietary restrictions. Tables with headache education, integrative therapies, and transition materials are set up throughout the space to allow participants to explore at their leisure. Team members present for the event have included two to four headache providers (physician/NP), a headache subspecialty nurse, one to three social workers, the headache team’s psychologist and/or psychology extern, an art and/or yoga therapist, a representative from Miles for Migraine, a volunteer parent/clinical psychiatrist, and a college aged mentor.

CAMP CURRICULUM:

09: 00–09:30 Registration & Breakfast (All Together)

The day’s schedule starts with a formal registration and a light breakfast.

09:30–10:45 Introductions, Headache Education & TRAQ (All Together)

Registration is followed by introductions to Miles for Migraine, the staff, and day’s curriculum. The limits of confidentiality and importance of creating a safe and supportive space throughout the day’s programming are reviewed. To establish connection early in the day, our volunteer patient-parent dyad introduces their story, past struggles, successes, and why they value the program.

Headache clinicians present brief didactic sessions, lasting 10–15 minutes each, on the following topics: Headache 101 (epidemiology, pathophysiology, standard treatment approach), Introduction to Integrative Therapies (literature review and clinical experience with non-medication options), Introduction to Behavioral Therapies (focus on Cognitive Behavioral Therapy (CBT), biofeedback and other skills taught by mental health care providers for headache management). These lectures are meant to provide an introduction to the topics, and have been shortened over the years based on patient and parent feedback.

We then distribute a modified Transition Readiness Assessment Questionnaire (TRAQ-HA for Teens), adapted from the validated TRAQ²¹ to be headache specific. A parent version is provided to caregivers (TRAQ-HA for Caregivers). The goal with this pre-assessment tool is to prompt/guide discussion during group sessions. It also informs teens of the age appropriate transition skills they should be working towards acquiring, while highlighting for caregivers what skills they should be supporting/fostering in their teen.

10:45–11:45 Support Groups (Parents and Teens separate):

The first breakout session involves separate parent and teen groups. The goals of the parent group are to allow for sharing and connection, while introducing some key concepts and parenting tips. It is helpful to open with a unifying, non-intimidating topic, such as how headache affects the family system, then gradually move towards emotionally-laden topics such as school attendance, discipline/chores, and responses to their child’s pain. Group leaders aim to promote positivity and cohesion without allowing one individual’s experience to dominate discussions. If an individual parent asks for medical consultation regarding his or her child, leaders redirect the discussion to topics which are relevant to all participants. See Table e2 for prompt ideas and suggestions.

While the parent-only group is in session, a parallel teen-only group is taking place in a separate space. The teen-only group usually begins with an ice breaker. Once tensions are alleviated and discussion is flowing, we move on to an activity called “Snowball.” For this game, group leaders ask teens to write down their greatest concerns, question, or fear pertaining to headache or transitioning to adulthood. That piece of paper is then crumbled and tossed into a center pile. The group forms a circle around the pile of paper. One by one, each teen chooses a crumbled piece of paper (snowball) and reads it aloud. The teen may choose to provide an answer first or open the question to the group. The group leaders interject when appropriate to guide discussions and foster positivity. The goals of this group are to allow for connection, while addressing fears, correcting misconceptions, and bolstering confidence in their abilities to successfully manage pain and achieve autonomy. Additional prompts that may add to the group discussion can be found in Table e3. Group leaders may interweave these points into other discussion or add snowballs themselves.

11:45–12:00 Break (All Together)

Breaks are built into the schedule throughout the day, and participants are permitted to take breaks as they need them.

12:00–13:00 Mixed Groups of Mismatched Teens and Parents

To arrange mixed groups, we ask parents to remain seated and then we have the teens find the room without their parents. Once settled, mixed group sessions begin by building up the teens as “a panel of headache experts.” Group leaders encourage parents to share their experiences with their own teens, and then ask our panel of experts for advice. Once teens have opened to sharing, group leaders allow teens to share their frustrations or experiences and ask parents questions they may not feel comfortable asking their own parents. Prompt ideas are in Table e4. This group often requires less direction than the parent-only or teen-only groups. Parents tend to offer valuable insight into their greatest parenting struggles and deepest desires for their own teen’s happiness. Teens often provide clarity and insight into the physical, developmental and social challenges that lead to feelings of isolation and fear. Ideas on how to best support one another emerge from these groups.

13:00–13:45 Lunch (All Together)

Lunch is provided and open as a time for social connection.

13:45–14:30 Discussion of School/Transition (All Together)

This session focuses on practical tips for navigating school. It is run as a panel discussion with a college mentor, someone knowledgeable about school accommodations (social worker and/or volunteer), and at least one headache provider. Parents and older teens are encouraged to bring their TRAQ assessments to further guide or prompt discussion. We initially scheduled a concurrent teen event, but over several Camps teens repeatedly requested to attend this session instead, so we no longer plan a concurrent teen session.

We open by explaining that we recommend regular school attendance to maintain a consistent schedule and to avoid worsened social isolation. We then discuss specific accommodations which can be helpful, such as rearranging the school day to allow a late start or clustering core classes to the most productive time of the day. We review 504 plans, which are available to students in public and some private schools, and provide protections to persons with disabilities. We discuss Individualized Education Plans (IEPs) for persons who require learning supports, especially those who have comorbid learning differences or persistent cognitive changes after concussion. We then discuss how to carry these accommodations forward into college. Tools used to guide this group have been provided by CHOP’s REACH program.

14:30–15:15 Question & Answer Panel Discussion and Introduction to Integrative Therapy (Separate rooms)

The Panel Discussion is open to all parents. Questions often revolve around specific therapies, especially therapies that are new or up and coming. We ask that all staff members be available to allow for multi-disciplinary perspectives and responses.

Parallel to this, teens enjoy a fun activity aimed at introducing new coping skills/integrative therapies. In past events, we have incorporated yoga, art therapy, horticultural therapy, and aromatherapy projects. To decrease burden and time commitments from staff, integrative therapy workshops have rotated to include several different therapies. We typically have at least one social worker or psychologist attend this group to ensure a supportive/therapeutic environment.

15:15–15:30 Closing Remarks and Evaluations

The formal sessions conclude with closing statements, unified messages and extensions of gratitude. Connection with one another through email and social media is encouraged with the goal of building a supportive community.

15:30–16:00 Open Table Sessions (All Together)

The tables containing headache education, devices (neuromodulation demonstrations, biofeedback equipment), and ways to get involved with Miles for Migraine remain open and staffed at the end of the day for any further questioning or demos.

PARTICIPANT FEEDBACK

Feedback was collected from participants and parents via anonymous surveys at the end of each Camp as part of the quality improvement process, and so was exempt from IRB review. Several questions asked for quantitative ratings on a scale of 1–5 (with 5 as highest), and other questions were open-ended. The answers were reviewed with the team soon thereafter and incorporated into plans for the next event.

Overall, both parents and adolescents were highly satisfied with the Migraine Camps. Participants particularly liked both the separate and mixed parent and teen groups, with 93% and 94.3% of respondents rating those groups 4 or 5 out of 5. All participants (n = 101) said they would recommend the program to others (see Table 1).

Table 1:

Quantitative Feedback

	N	Min	Max	% rate 4 or 5
How helpful did you find the 15-minute talks on headache management and biofeedback/CBT at the beginning of the day?	85	2.0	5.0	81.1
Parents	48	3.0	5.0	85.4
Teens	37	2.0	5.0	75.6
How helpful did you find the separate parent and teen groups?	101	1.0	5.0	93
Parents	51	2.0	5.0	98
Teens	50	1.0	5.0	88
How helpful did you find the mixed parent and teen groups?	88	1.0	5.0	94.3
Parents	51	1.0	5.0	98
Teens	37	3.0	5.0	89.2
This experience has helped to reduce feelings of isolation. (teens only)	13	2.0	5.0	76.9
The tools presented helped me feel that there are things I can do to help myself. (teens only)	13	2.00	5.00	69.3

Note. N = Sample Size (varied due to different versions of feedback questionnaire), Min = Minimum, Max = Maximum, All items were rated on a scale of 1 to 5.

The open-ended qualitative responses similarly show that both teen and parent participants felt that the Migraine Camp was helpful on both a practical and emotional level. Many parents and teens noted that the most helpful aspect of Camp was that it allowed them to see that they are not alone in the struggles they face with chronic headache. Teens, in particular, enjoyed unstructured time to talk to peers, and some felt the program could be improved by offering more opportunities for this, with less lecture. Parents emphasized the importance of new information such as latest research on pediatric headache, as well as more time to connect with one another (see Table 2).

Table 2:

Qualitative Feedback

Question	Caregiver Responses	Teen Responses
What was most helpful about this program?	Talking with other parents that are going through the same things I am. The networking and ability to have caregivers involved with professionals working together to help families. Understanding the teens view Hearing that others had the same issues and found some solutions	Being able to talk freely in the teen groups Seeing others go through the same thing as me I got to be around people who also have migraines. Learning about colleges
How could this program be improved?	It was a little long for the kids with chronic illnesses Information on support groups for parents and children Add stress/anxiety management Learning more about possible new medications that are becoming available	A little shorter day. It went by fast, but I am tired. Include more teen group talk and getting to know each other. Age groups separate More time to socialize Less talking from adults more talking by kids

CHALLENGES

Many challenges were encountered in developing the Camps at these two different institutions. We navigated these with our clinical expertise, but sometimes wished that there was more data to guide our recommendations. These challenges included:

• Focus on comparison of symptoms: Chronic headaches can present with a wide spectrum of symptoms, so it Is important to establish common ground and avoid allowing one teen or caregiver to dominate the discussion.

• Feelings of isolation: Teens and caregivers may be initially hesitant to share their experiences. As the program progresses, we often witness a growing sense of support, allowing teens and their caregivers to open up to one another.

• Focusing on empowerment rather than victimization: While we acknowledge the disability caused by migraine and other chronic headache disorders, we focus on positive coping, empowerment, socialization, support, optimal functioning, successful transitioning to adulthood, etc.

• Setting appropriate expectations: Teens and families sometimes focus on the elusive expectation of finding a cure, at the expense of other things which can improve their quality of life. While we also hold hope for a cure for migraine, we encourage acceptance of their current experience in order to find positives in the journey. With this approach, teens and caregivers seem to be more able to embrace coping strategies and other treatment options.

• Lack of trust in the medical system: Most teens who attend these events have failed standard medical treatments, leaving them with very little trust in our ability to intervene. We use the opening didactic sessions to validate treatment approaches that we will be introducing throughout the day. If medical questions are asked during group sessions, we have found it is best to defer those questions to the Q&A panel at the end of the day. This allows medical questions to be answered by appropriate staff members and shared with the group at large.

• Discussion of school attendance: When school attendance is poor, families may choose different paths for their teen’s education (e.g. home school, online school, or homebound education). To our knowledge, there are no data to support that one educational pathway is superior to another. Anecdotally, headache specialists generally consider regular school attendance as a key part of the treatment plan in order to maintain routine schedule and socialization²². Accommodations may be implemented to address the needs of the individual student. We find it helpful during these events to explain the reason behind recommendations, and focus on available options without becoming overly focused on any single situation.

• Staffing: We are fortunate at our sites to have a robust staff of dedicated, knowledgeable volunteers, and headache program clinicians. We suspect other pediatric centers could be successful with fewer staff members from a variety of backgrounds. We did find inclusion of at least one peer mentor, one parent volunteer, one mental health provider, and one headache clinician vital to execution.

• Other logistical challenges are summarized below in table 3.

Table 3:

Logistical Challenges

Challenge	Solutions
Cost of food, parking, supplies, staff	Donations from Miles for Migraine, community businesses, and CHOP families Utilized Eventbrite to collect donations Volunteers (CHOP employees, caregiver/patient, and Miles for Migraine)
Locating a space/location	Three rooms in a non-clinical setting reserved six months in advance
Preventing/managing symptom exacerbations	Relaxation space provided Frequent breaks, hydration, snacks and movement encouraged
Time commitment for families	Late arrivals and early departures permitted
Participation	Email notifications sent to those families of a teen diagnosed with a chronic headache type Reminder emails sent at two weeks and two days prior to the event
	Utilized Eventbrite to track and organize registration Advertised on headache program website, Miles for Migraine website, and social media Recommended at office visits Over-enrolled participants due to 20% “no show” rate
Continuing support after camp	Social events held to reunite previous participants Information exchange encouraged

CONCLUSION, LIMITATIONS, AND FUTURE DIRECTIONS

Our experience has demonstrated the feasibility and acceptability of offering the comprehensive one-day intervention, Migraine Camp, to teens with headaches and their families. Migraine Camp has been successfully conducted 1–2 times yearly at two separate university-affiliated, subspecialty pediatric headache programs. It has been well received by patients, families and staff. Our detailed curriculum provides basic headache education, allows for social connection, and introduces coping strategies and transition skills. We have included a detailed account of our methods in developing and implementing a Migraine Camp in the hopes of providing ease of replication for other pediatric headache programs.

Future directions should include controlled trial of this intervention with validated pre- and post- outcome measures. Additional benefits may be gained with an in-person or online continuous program combining both education and support. In addition, while our curriculum was designed to target patients with chronic headaches and their families, the program structure, including disease-specific education, coping strategies, and caregiver support, may be adapted to meet the needs of other adolescent patient populations.

Abbreviations:

CHOP

Children’s Hospital of Philadelphia

UCSF

University of California San Francisco

REACH

Rapport Empowerment Advocacy through Connections and Health transition

CBT

Cognitive Behavioral Therapy

TRAQ

Transition Readiness Assessment Questionnaire

HA

Headache