Understanding the diagnoses and medical care experience of patients with new daily persistent headache: a qualitative study in Spain

ObjectiveTo explore the experiences of patients suffering from new daily persistent headache (NDPH) regarding the diagnostic process, treatment and medical care.DesignA qualitative phenomenological study was conducted.SettingA specialised headache unit at two university hospitals in Spain between February 2017 and December 2018.ParticipantsPatients diagnosed with NDPH according to the International Classification of Headache disorders (third beta edition).MethodsPurposeful sampling was performed. Data were collected using unstructured and semistructured interviews, researchers’ field notes and patients’ drawings. An inductive thematic analysis was used to identify significant emerging themes from interviews, field notes and descriptions of patients’ drawings. Also, Guillemin’s proposal was used to analyse the contents of drawings.ResultsNineteen patients with a mean age of 45.3 were recruited. Four main themes emerged: (1) Seeking a diagnosis, patients visit many doctors without receiving a clear answer and their diagnosis is delayed; (2) Self-medication—minimising pill intake, medication is ineffective, and therefore, some patients discontinue treatment, or are flexible with how they take medication; (3) Trying other non-pharmacological options, many patients turn to other therapies and complementary and/or alternative therapies as a second option, however these are ineffective and (4) Medical care, with two subthemes, referrals and lacking continuity of care, and building the doctor–patient relationship. Patients describe how the referral breaks the continuity of care, and how they identify the traits of a doctor who is approachable and which behaviours the doctor should avoid when caring for patients.ConclusionsAn in-depth knowledge of the beliefs and expectations of patients with NDPH will allow the professional to establish a relationship of trust, which will improve the patients’ knowledge of which therapies are the most appropriate, and to establish expectations based on the relationship with the doctor, and not only on patients’ beliefs.