ObjectivesThis study aimed to explore the views and experiences of a group of Spanish patients suffering from new daily persistent headache (NDPH).MethodsA qualitative descriptive study was conducted with patients diagnosed with NDPH. Purposeful sampling was performed among patients attending a specialized Headache Unit at 2 university hospitals between February 2017 and December 2018. In total, 18 patients (11 women, 7 men; mean age 45.3, standard deviation 10.6) with a median duration of illness of 70 months (interquartile range, 24‐219) were recruited to this study. Data were collected through in‐depth interviews, researchers’ field notes and patients’ drawings. Thematic analysis was used to identify emerging themes.ResultsThree main themes were identified: (1) the origin of the illness and seeking answers; (2) characteristics of the pain; and (3) the impact of pain on patients’ lives. The patients precisely recalled the time of onset and the trigger of the pain. Pain was constantly present, although it varied in form. At the onset, pain was perceived as a sign of alarm while, over time, it became an invisible illness. The headache commonly had a major impact on everyday life and could cause lifestyle changes. In addition, pain could be emotionally disruptive and could also lead to family estrangement and a search for solitude.ConclusionsOur results provide insight into how NDPH is experienced, which may be helpful in managing NDPH patients. In our cohort, patients identified precipitating events but sought answers regarding the origin of their illness and their pain. Pain was a continuous sensation that had a major impact on patients’ daily lives and emotions.

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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.

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