Table 2.

Examples of narratives of patients with NDPH

Theme: Seeking a diagnosis
Common meaning groups	Narratives
1 The reason for seeking help	Sudden and persistent pain: ‘It’s normal to have a headache at some point. And it’s normal foor there to be a cause for it, however, like this? Suddenly, and every day, at all times, always? I went to the doctor and began seeking help.’ (P5). Fear for the cause of pain: ‘I was scared, that there may be a tumor, for time to go by and not be able to treat it on time. The sooner you know what is happening to you, the sooner you are given treatment to cure it. That’s why I wanted to know the diagnosis.’(P2)
2 Looking for an answer	Using all possible means: ‘I was hospitalized for three days and they did an electrocardiogram, x-rays, NMRs, blood tests… Everything you could imagine, with the hope that at some point they would find something.’(P3)
3 The meaning of the diagnosis	The name, the label: ‘Knowing the name of what I have, knowing that the doctors know what to treat, that they aren’t going to go round and round anymore’ (P16)
4 Duplication and repetition of the diagnosis tests	Starting the tests again: ‘When I got to a new doctor, the process was repeated once again, doubts and mistrust for all the tests previously performed. In the end, they ask for all the same tests again. The new doctor wants to decide with his own data and his tests,… time wasted.’ P18)
5 Delayed diagnosis	Diagnostic delay: ‘They should have sent me to the neurologist for the diagnosis a long time ago. And stop doing so many tests only to obtain the same results. All these years with pain has been unwarranted and unnecessary.’(P4)
6 Reaction to delayed diagnosis	Frustration when new diagnostic tests are requested: ‘They told me that they didn’t see anything and I left in despair. It was frustrating, I couldn’t take it any longer. They had to repeat more exams and I had to wait longer. All day long with pain and I still had no treatment.’P5). Feeling discouraged due to the lack of answers: ‘Not knowing what I have after so many tests makes me feel really bad, like I am worthless. For them not to know what I have after seven years, and when the pain is increasing, it lowers your morale. You don’t feel like doing anything.’(P5)
7 ER as a shortcut to see a specialist	Health care shortcut: ‘For me, going to the emergency room was a way of finding a faster response. However, it was my doctor who sent me. The tests were taking too long and I wanted the opinion of a neurologist as soon as possible. In the emergency department, I was seen by the neurologist on duty’ (P2)

Theme: seeking a diagnosis.

ER, Emergency room; NDPH, new daily persistent headache.