Examining the experiences of patients with new daily persistent headache

Jessica Gautreaux, MD, reviews the first qualitative descriptive study on NDPH

A new study in Headache® examines the views and experiences of a group of Spanish patients with new daily persistent headache (NDPH). This is the first piece of research to record the experiences of people living with new daily persistent headache, according to Jessica Gautreaux, MD, director of the Pediatric Headache Center at Children’s Hospital of New Orleans, who reviewed the study for AHS. Particularly noticeable among the patients, she said, was “how little improvement they’ve seen, how much the pain has become a part of their life and the effect that pain has had on their life now that it’s been with them for so many years.”

“The Day My Life Changed: A Qualitative Study of the Experiences of Patients with New Daily Persistent Headache” is the first study of its kind conducted with patients diagnosed with NDPH. Researchers performed purposeful sampling among 18 patients attending a specialized Headache Unit at two university hospitals between 2017 and 2018. They collected data through in-depth interviews, researchers’ field notes and patients’ drawings. The authors of the study followed up with a thematic analysis to identify emerging patterns.

Implications for providers

Dr. Gautreaux says the results can give providers a personalized feel of what their patients are going through. “[The authors] use quotes from the patients to give you that key experience that the patients are feeling,” Dr. Gautreaux notes. For instance, the patients did not have a preexisting headache disorder. “To have onset of a headache that never went away was a bit alarming and left them seeking answers.”

The authors also looked at how NDPH affected patients’ lives. In particular, they examined what patients perceived about the beginning of the headache disorder. Patients also discussed their experiences over time of how it had affected not only them, but their family members. “Patients mentioned feeling like it was a silent disease and that people didn’t understand,” she says. It struck her as “isolating” that NDPH was a silent disease with very few other signs other than constant pain.

Dr. Gautreaux found it noteworthy that even though NDPH affected patient lives significantly, many of them still were able to work, which was important to them. “We find a lot of children with NDPH who will start to miss school. We consider school similar to work, so it did surprise me that the patients in this study were still managing to work and really wanted to work”.

Next steps in research

Dr. Gautreaux says there needs to be more research on NDPH. “We don’t understand why it happens. We don’t actually understand the physiology behind it in the way that we maybe understand migraine physiology now, and we don’t know a lot about how to treat it,” she says.

While some patients get NDPH and it spontaneously resolves, Dr. Gautreaux notes that for many NDPH patients “it just persists and persists and doesn’t respond to the things we use for other headache disorders.”

Currently, physicians try to treat the features of an NDPH headache. Dr. Gautreaux explains, “Let’s say the features of their headache disorder mimic migraine. Then we would treat it like we treat migraine. But NDPH is really resistant to a lot of our usual treatments.” One path forward, she suggests, is to “create specific scales for quality of life for people who have NDPH, and maybe not [use] scales that were designed for other headache disorders.”

Dr. Gautreaux views this article as a “move in the right direction for patients with NDPH” and hopes they bring attention to patients’ experiences. “As awareness grows about NDPH and the experience of having NDPH, there is greater hope that more research will be done to gain an understanding of the physiology and to look for more treatment options.”

Headache®: The Journal of Head and Face Pain is the official journal of the American Headache Society. AHS frequently reviews published research and provides commentary on the work being done to help advance the understanding of headache and face pain. For more analysis on studies published in Headache®, visit the AHS News page.