Patient perspectives on research gaps in cluster headache

OBJECTIVE: This study was undertaken to identify gaps in cluster headache management, highlight patient-prioritized research needs, and assess patient interest in, and preferences for, clinical trial participation.

BACKGROUND: Many people with cluster headache still lack effective treatment options to control or prevent attacks. There is a critical need for more studies, particularly clinical trials, in this field. To design and conduct successful trials, it is essential to identify priority research areas, allocate resources effectively, and ensure patient engagement and support.

METHODS: This study was an online survey conducted among Australian adults with self-reported cluster headache. Participants were recruited using a multi-channel approach, including direct outreach by clinicians, support from patient advocacy groups, and broad social media distribution. It collected data on demographics, treatment experiences, and perspectives on future research, including research priorities, and preferred outcomes and interventions. Additionally, participants' interest in joining clinical trials was assessed to help identify potential candidates for future studies.

RESULTS: Of the 219 individuals who began the survey, 17 (8%) were excluded due to providing no responses beyond demographic data or reporting no cluster headache diagnosis by a healthcare professional. The final sample consisted of 202 participants, with an average age of 46 years, 77% aged 25-54 years, 55% male, 72% had been living with cluster headache for more than 10 years, and 29% reported attacks occurring almost every month throughout the year. A quarter of participants had not followed up with a healthcare provider for cluster headache management when they completed the survey. Among those who sought care (n = 145 [72%]), general practitioners were the most frequently consulted (86%), followed by neurologists (66%). Treatments were considered "not at all effective" or "somewhat ineffective" by 35% of all participants, while 27% reported only partial effectiveness. The main treatment challenges were ineffectiveness (74%), side effects (54%), cost (53%), and difficulties with access (39%). Among the 202 participants, 126 (62%) indicated interest in participating in future cluster headache trials, while 26 (13%) responded with "maybe." Psilocybin was the highest-ranked treatment in terms of participants who were "very interested," with 66% selecting this option. The combined proportion of participants who were "very interested" or "interested" was 84% for combination therapies, 82% for psilocybin, 71% for medical devices, and 66% for anti-CGRP treatments.

CONCLUSION: Participants with reported cluster headache highlighted inadequate treatment options, emphasized the need for further research, and expressed interest in future clinical trials, particularly those involving psilocybin or combination therapies.