Patients’ experiences with a nurse-led transmural headache care pathway: a qualitative study

Abstract

Background

Headaches cause high disease burden, and are often under-treated. Adequate treatment requires time and expertise, which can be limited in general practices. With the aim to improve the quality and accessibility of care, an unique nurse-led, digital transmural care pathway has been developed in which treatment is provided by nurse practitioners specialized in headache care. It is essential to understand patients’ perspectives on the novice care pathway to uncover opportunities for enhancement.

Objective

To explore patients’ experiences with the nurse-led transmural headache care pathway, including experienced headache burden, improved headache control, and experiences with communication, person-centeredness, and accessibility within the care pathway.

Method

This descriptive qualitative study consisted of fourteen semi-structured interviews with patients included in the care pathway. The population consisted of patients with tension-type headache, migraine, and medication overuse headache. Data were analysed using thematic analysis by Braun and Clark.

Results

Five main themes emerged: (1) expectations related to the care pathway, where patients expressed a desire for reduced headache burden, support in understanding and managing their condition; (2) effectiveness of treatment on everyday functioning, with many participants experiencing fewer headaches and improved daily functioning; (3) digital communication contributing to more accessible care, where participants recognized digital care as accessible and time-saving. However in-person visits were preferred for initial contact, because digital care can feel more impersonal; (4) more insight into headaches due to the use of the digital diary app, where participants talked about gaining more insight into their headaches and mentioned opportunities to improve the app’s usability; and (5) patient-centered care provided by the nurse practitioner, because of their expertise, listening abilities, and personalized approach to treatment.

Conclusion

This care pathway was valued for its accessible, person-centered care and the nurse practitioner’s expertise and personalized approach. However, improvements in digital headache app and holistic assessment (e.g., help identify triggers) could further increase its contribution to patient care. After treatment within the care pathway, many participants experienced reduced headache symptoms. Therefore, the care pathway has potential for wider implementation, enabling nurse practitioners to extend this care pathway to other headache patient groups.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12912-026-04757-y.

Introduction

Headache disorders affect approximately 40% of the population worldwide, with a higher prevalence among women than men [1]. The most common types of primary headaches are tension-type headache (TTH) and migraine, which can be exacerbated by medication overuse, leading to medication overuse headache (MOH) [1, 2].

TTH, migraine and MOH are responsible for high levels of disability and disease burden and therefore have a significant impact on society [1, 3–6]. This high disease burden includes a substantial impact on daily life [3], significant personal suffering, reduced quality of life, and financial cost [7]. Chronic headache disorders may also increase the risk of developing other conditions, such as anxiety and depression [1, 5]. Chronic or severe medical conditions may also affect cognitive functioning, further highlighting the importance of comprehensive patient-centered care approaches [8].

Headache disorders are often underestimated, underrecognized, and undertreated globally [1, 7, 9]. Many patients face a prolonged journey from symptom onset to effective treatment. Optimal care can be challenging because of inadequate self-management, misdiagnosis, long waiting times, ineffective treatment, and comorbidities often hinder this process [10]. Usually, in the Netherlands, patients with headaches are treated by general practitioners (GPs) [11], but GPs sometimes struggle with diagnosis and treatment, which can lead to suboptimal outcomes [7, 11, 12]. Adequate treatment and guidance for patients with headaches require a significant amount of time and specialist knowledge. This includes accurate diagnosis, appropriate therapies, lifestyle changes, patient education, and appropriate pharmacological interventions [1, 10]. In recent years, nurse practitioners specializing in headache have been trained to support the GP in the treatment of patients with headache [13, 14].

Nurse practitioners (NPs) are advanced practice nurses, trained to independently perform medical tasks typically managed by doctors. They work across both medical and nursing domains, with a primary focus on a specific area of healthcare, where they develop specialized expertise [14, 15]. NPs specialised in headache care contribute to addressing the challenges faced in the care of patients with headaches [14, 16]. According to Clark et al. (2008), using nurse-led headache clinics to treat headaches could result in a substantial reduction in waiting times and an increase in the quality of care [16]. This notion served as the basis for a nurse-led care pathway (Box 1) that has been developed in the Nijmegen region of the Netherlands, aimed at providing effective, person-centered and accessible care. The care pathway was designed and implemented in 2020 in close collaboration between the GP and the neurology department of a hospital [13]. Currently, more than 200 patients have been treated in the nurse-led transmural care pathway.

Box 1:

Description of nurse-led transmural headache care pathway

This care pathway consists of standardized care procedures delivered through digital communication. Patients with unclear diagnosis or ineffective treatment are referred by their GP to this care pathway. Prior to the first consultation, the patient is asked to provide information on their symptoms, headache burden and treatment using the standardized questionnaires: Headache Under-Response to Treatment (HURT), questionnaire about alarm signals, and the Cluster Headache Screening Questionnaire (CHSQ) [17, 18]. The initial phone consultation focuses on introduction of the care pathway, evaluating the completed questionnaires, and aligning expectations between NP and patient. If MOH is not suspected, the patient uses a headache diary app for one month to track symptoms and medication use, followed by a video consultation (VC) for further evaluation and treatment. During the second consultation, a preliminary diagnosis is established, and treatment options are discussed, where the NP addresses both lifestyle and medication. When MOH is identified, a two or three month detox period is initiated with phone consultations for support. In the last month of detox, the headache diary app is completed, followed by a digital consultation for further diagnostics and treatment as described above. Care is continuously evaluated, with referrals to a neurologist or back to GP if necessary.

Internationally this care pathway is unique because of its transmural and digital character, and the leading role of the NP. Several studies have shown that digital care in migraine management is as effective, safe, and satisfactory as traditional care while improving access and reducing costs, despite occasional technical issues [19]. However, the combination of digital care with transmural headache management led by an NP has not yet been investigated. To substantiate and further develop the care pathway, it is important to gain insight into how patients with headache experience quality of care in terms of communication, person-centeredness, and accessibility of care.

Aim

The aim of this study was to gain insight into the experiences of patients with TTH, migraine, and MOH with the nurse-led transmural headache care pathway. The experiences focused on the perceived effectiveness of reducing headache burden and improving control over headaches. In addition, experiences with the nurse-led transmural headache care pathway will be explored in terms of communication, person-centeredness, and accessibility.

Method

Study design

A descriptive qualitative study using semi-structured individual interviews was conducted at the headache outpatient clinic between April 2024 and July 2025. With this design participants’ experiences with the nurse-led transmural headache care pathway at the outpatient clinic of a Dutch hospital were explored [20]. Findings were reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [21].

Study population

The population consisted of patients with TTH, migraine, and MOH who are being treated or had completed treatment within the nurse-led transmural headache care pathway. The participants met the inclusion criteria described in Table 2.

Table 2 .

Inclusion criteria

Inclusion criteria
• Being diagnosed with TTH, migraine or MOH by GP or NP
• Age > 18 years
• Minimum of at least two consultations within the nurse-led transmural headache care pathway
• Proficient in Dutch language

Recruitment and procedures

Purposeful sampling was used to obtain a sample of patients with TTH, migraine, or MOH, striving for representativeness based on maximum variation in variables such as age, gender, and diagnosis [20, 22].

Patients were recruited using two approaches: (1) patients who indicated willingness to participate in scientific studies in their personal patient files were contacted by the NP, and (2) the NP informed patients about the study during the consultations and determined their interest in participation. Interested patients received written information and gave permission to be contacted by the researcher. The researcher then followed up by phone to provide further information and scheduled interviews. Informed consent was obtained by email or verbally before the interview.

Data collection

Based on the study objective, the following study parameters were identified: effectiveness, communication, person-centeredness, and accessibility. These study parameters were operationalized according to the World Health Organization’s (WHO) definition of Quality of Care [23] and the conceptual model of Proctor [24]. This formed the exploration of the four study parameters: (1) effectiveness (function, symptomatology, appropriateness, and satisfaction), (2) person-centeredness (appropriateness, patient-centeredness, and satisfaction), (3) communication (patient-centeredness), and (4) accessibility (effectiveness, and satisfaction) (see Table 3). Within the WHO definition, this study focused on the outcomes “effective” and “people-centered” (referred to as “patient-centeredness” in Table 3) [23]. Following Proctor’s conceptual model, “effectiveness” was further subdivided into “appropriateness,” “satisfaction,” “function,” and “symptomatology”. The study parameter “patient-centeredness” was also included [24]. Three researchers were involved in this process.

Table 3.

Study parameters, definitions and topics

Study parameters	Proctor and WHO	Definition	Topics for topic list	Questions interview guide
Effectiveness	Function	Proctor: Client quality of life and reduction of barriers	First and last question from the HALT-30, measuring headache burden	− How many days in the past month were you unable to go to work or school because of your headache? − During the past month, on how many days were you unable to participate in family, social, or recreational activities because of your headache?
Effectiveness	Symptomatology	Proctor: Clinical data, linkage and retention as measured by patient appointments and gaps in care	- Reduction in headache duration, intensity or/and frequency - Having a grip on headaches (knowing what to do when headache occurs)	− Can you describe what a day with TTH/migraine/MOH looks like for you? − Since participating in the care pathway, have you noticed any changes regarding your headaches? If yes, in what way (duration, intensity, and/or frequency)? − Has the care pathway helped you to cope with your headaches? − Since participating in the care pathway, do you feel that you know what to do when you experience a headache? − What impact does the reduction or stabilization of your headache symptoms have on you?
Effectiveness Person-centeredness	Appropriateness	Proctor: The perceived fit or relevance of the intervention in a particular setting or for a particular target audience or issue	Added value of nurse-led transmural care pathway for patients	− What has been of added value for you in this care pathway? − What were the strengths of the care pathway? − In your opinion, what could be improved in this care pathway?
Person-centeredness Communication	Patient-centeredness	Proctor: Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions WHO: Providing care that responds to individual preferences, needs and values	Integrating care with patients’ preferences and needs	− What were your specific wishes in this care pathway? − Have your expectations/wishes been met? − To what extent did the video consultation/telephone consultation, treatment by the nurse practitioner, and the headache diary app meet your needs?
Effectiveness Accessibility	Effective	WHO: Providing evidence-based healthcare services to those who need them	Accessibility of care pathway	− How long did you have to wait after referral from your GP before the first consultation was scheduled? − How did you experience the process of scheduling a consultation? − Is it easy to get in touch with your nurse practitioner? − How do you experience the accessibility of the consultations and the digital headache diary?
Effectiveness Accessibility Person-centeredness	Satisfaction	Proctor: Satisfaction with the intervention. References the general service experience, including such features as waiting times, scheduling, and office environment	− Communication − Experience digital consults − Satisfaction of perceived care − Experience consult with nurse practitioner	− How do you experience your treatment through digital consultations? − What is your opinion about not having face-to-face appointments with your nurse practitioner? − How do you experience the communication within the care pathway? − How do you experience the use of the digital headache diary during your treatment, if applicable? − What is your opinion of your treatment by the nurse practitioner? − Do you notice any differences in treatment between your nurse practitioner and previous healthcare providers? − To what extent was attention given to the non-pharmacological aspects of treatment (within different domains such as psychological, social, etc.)?

Based on this operationalization, a new interview guide was developed (Table 3 and Supplementary A). This interview guide was peer reviewed by the research team and used during all interviews. The HALT-30 questionnaire and information on demographic characteristics were collected at the start of each interview. After five interviews, the interview guide was reviewed to assess whether adjustments were needed [20]. After review, an extra question regarding non pharmaceutical treatment was included.

Data were collected by CB and four bachelor’s nursing students (DV, EP, MB, SP). Of the fifteen interviews, nine were conducted in pairs by the students under the supervision of CB and LD, and six were conducted by CB. The interview team consisted of one male and four female researchers. CB and LD had prior experience in conducting qualitative interviews. The bachelor’s students had no prior experience with interviewing. Therefore, training and supervision was provided by CB and LD. Interview techniques and procedures were thoroughly discussed prior to the study, and continuous reflection was conducted throughout its execution. They also received training at the HAN University of Applied Sciences. The interviews took place in a private hospital room or by phone, based on patient preference. Beside the researchers and the participants, no one else was present during the interviews. At the start of the interview, it was emphasized that participants could withdraw from the study at any time without consequences. If someone withdrew before the interview, replacement was sought. The interviews lasted twenty-five to sixty-five minutes, were audio recorded, and memos were made by the researcher about impressions, thoughts, and emerging themes. No repeated interviews were conducted.

A member check was performed with eight of the fourteen participants. These participants received a brief summary of their interview and were invited to verify its accuracy, thereby allowing for the clarification of any potential misinterpretations. Participants were requested to review the document and to report any comments via email. In the absence of a response within three days, consent with the content was assumed. All member checks were approved.

Data saturation was considered to be achieved, as there were no new codes found after the fourteenth interview [20, 22].

Data analysis

Thematic analysis using the six phases of Braun and Clark’s [25, 26] was applied to gain an in-depth understanding of patients’ experiences with the nurse-led transmural headache care pathway (Table 4). CB performed all steps of the thematic analysis in close collaboration with LD. Coding and development of themes took place in collaboration with the research team. Independent coding by CB and one other member of the research team was conducted for each interview and regular discussions were held to develop the themes. The codes and themes were compared until consensus was reached. Atlas.ti 9 was used to analyse all the data.

Table 4.

Analysis according to thematic analyses by Braun and Clarke [25, 26]

1. Familiarising with the data	The transcripts were read and re-read by the researchers (LD, SP, MK and CB). While reading the transcripts, memos were be made to document initial thoughts and ideas.
2. Generating initial codes	The data were coded by two researchers separately (LD&CB, SP&CB or MK&CB) using open coding. The codes were compared until consensus was reached.
3. Searching for themes	The researchers LD and CB reviewed the codes to identify preliminary themes and subthemes, and initial descriptions of themes and subthemes were made.
4. Reviewing themes	CB reviewed the preliminary themes against the transcripts to ensure all codes aligned with the themes. The themes were then discussed and refined by the research team, and a thematic map was created.
5. Defining and naming themes	The themes and the definitions were discussed within the research team, which lead to refinements in the meaning of the themes as well as their names.
6. Producing the report	CB wrote the first draft of the report with selected quotes to illustrate the themes. The research team provided feedback several times to optimize the report.

LD= Lisa van Dongen, SP= Suzanne van de Pasch, MK= Melanie van Kranen, CB=Cheryl van den Bovenkamp

Trustworthiness

To enhance the trustworthiness of the study, several techniques suggested by Lincoln and Guba were used (1985) [27]. Credibility was established by maintaining an open attitude during the data collection, with a focus on learning from participants. Verbatim transcription of the data reduced the potential for bias. Research triangulation was achieved through discussions between researchers about the arising themes, increasing the credibility and conformability of the interpretations. Thick description was strived for through detailed descriptions of the data collection and analysis.

Recruitment was conducted via the NPs because the researchers did not have a therapeutic relationship with participants. While participants were informed that their participation would not affect their treatment, social desirability bias cannot be fully excluded. Patients may have consciously or unconsciously moderated their responses to protect the therapeutic relationship. Agreements have been made with the NPs to invite all the patients complying with the inclusion criteria. The NPs were not involved in discussion about the meaning of the data and the findings of this study. They were further informed after finalization of the data. The themes were presented to the NPs and the NPs provided contextual information on the care delivery to support the interpretation.

The researchers involved in the data collection and data analysis work in the hospital where the study was conducted, but had limited prior knowledge of the care pathway and had no prior experience with this patient population in the care pathway. CB, LD, AV and MK work in other departments. SP (neurology resident) is working in the same department as the NPs but did not have any involvement in the development of the care pathway and care delivery in this pathway.

Ethical issues

This study does not fall under the Medical Research Involving Human Subjects Act (WMO), as it did not involve medical interventions or impose procedures on participants, nor did it involve the collection of sensitive personal data as defined under the Act. Therefore, formal approval from a Medical Research Ethics Committee was not required. In accordance with institutional policy, the study was submitted to the local review board of Canisius Wilhelmina Ziekenhuis (CWZ) for a quality check, ensuring that the study complied with relevant guidelines, including the Declaration of Helsinki [28] and the GDPR [29]. This review confirmed that the study complied to relevant guidelines and regulations and that there were no objections to its conduct (reference number: CWZ-nr. 2024-0026). The original audio tapes were deleted after the study was completed. Personal data were coded using participant numbers during transcription. The linking table to personal data was stored securely and separately from the transcripts. Study data were stored in a protected folder on the hospital’s server, which was accessible only to certain members of the research team.

Results

A total of 116 patients were approached by the nurse practitioner or research team, of whom fifteen participated, with one participant withdrawing for personal reasons. Patients declined participation due to lack of time, interest or because they did not respond to attempts to establish contact. Most patients were female, with a mean age of 43.7 ± 11.9 years, and ranging between 21 and 61 years old. Most patients (n = 10) suffered from migraine, which was sometimes combined with TTH (n = 2) or MOH (n = 1) and one participant had only TTH (Table 5). At the time of the study, ten patients were receiving treatment in the nurse-led transmural headache care pathway. The disease burden, indicated through questions from the HALT-30, showed that the majority of participants had gone to work (almost) every day, while more participants had canceled recreational activities in the previous month.

Table 5.

Demographic characteristics and HALT-30 scores

Characteristics, n (%)	Participants (n = 14)
Gender
Male	1 (7%)
Female	13 (93%)
Age in years
20–29	3 (21%)
30–39	1 (7%)
40–49	4 (29%)
50–59	5 (36%)
60–69	1 (7%)
Educational level
Secondary education	1 (7%)
Secondary vocational education	2 (14%)
Higher professional education	8 (57%)
Academic education	3 (21%)
Working
Yes	14 (100%)
Living status
Living together (partner and/or children)	12 (86%)
Living alone	2 (14%)
Diagnosis
Migraine	10 (71%)
TTH	1 (7%)
Migraine and MOH	1 (7%)
Migraine and TTH	2 (14%)
Time of diagnosis in years
0–9	6 (43%)
10–19	3 (21%)
20–29	3 (21%)
30–39	2 (14%)
Number of consultations
0–2	2 (14%)
3–4	7 (50%)
5–6	3 (21%)
7–8	1 (7%)
9–10	1 (7%)
Still undergoing treatment in care pathway
Yes	10 (71%)
No	4 (29%)
HALT-30: How many days in the past month were you unable to go to work because of your headache?
0	11 (79%)
1–2	1 (7%)
3–6	0 (0%)
7–8	1 (7%)
9–10	1 (7%)
HALT-30: How often or how many days in the past month have you had to cancel family or social activities due to your headache?
0	5 (36%)
1–2	4 (29%)
3–4	1 (7%)
5–6	3 (21%)
7–10	0 (0%)
Unknown	1 (7%)

Themes

Five main themes emerged from the data: (1) expectations related to the care pathway; (2) effectiveness of treatment on everyday functioning; (3) digital communication contributing to more accessible care; (4) more insight in headaches due to the use of the digital diary app; and (5) patient-centered care given by nurse practitioner. Figure 1 shows the most frequently described codes related to the themes and Fig. 2 shows how the themes are related to the study parameters of this study, with three themes corresponding to more than one parameter.

Fig. 1.

Coding tree*. *In some cases code names were abbreviated for readability

Fig. 2.

Thematic map themes

Expectations related to the care pathway

Before participating in the nurse-led transmural headache care pathway, many patients have been treated by a GP or neurologist without achieving the desired treatment outcomes. In most cases the aforementioned expectation in regard to the care pathway were met. As treatment goals, each patient expressed a desire to reduce their headaches, while also seeking to understand the cause of their headaches and some participants indicated that they were searching for recognition and acceptance of their condition. For example, one patient described how validation from their NP helped them feel understood and reassured that their symptoms were legitimate rather than exaggerated. This recognition provided a sense of relief and supported them in making sense of their experiences with their condition. Many participants struggled to understand their headaches, and to determine when to use medication. Many initially expressed a desire to minimize their medication use, often postponing it as long as possible because of concerns about potential side effects affecting their everyday life. Additionally, some expressed that they had expected more focus on identifying triggers and possible causes of their headaches during treatment.

In a few cases the pathway did not meet the expectations. Some patients preferred physical consultations over digital consultations, and another participant also indicated that they would have preferred to be also treated by a neurologist. One participant felt that she had to prove her diagnosis again during the treatment and found it frustrating to have to go through the MOH detox process again. She felt unheard because she had actually entered the care pathway hoping to receive other medications (such as botox injections). One participant explained that treatment was stopped after the second consultation because her type of headache was not included in the care pathway.

I was expecting a bit more depth regarding the triggers, like more focus on investigating food as a trigger, food would be included in the headache diary or at least be part of the research. – participant ten

Effectiveness of treatment on everyday functioning

Before the start of the care pathway, headaches had a significant impact on the lives of patients, yet they were still trying to lead their normal life. Most had been living with the condition for some time and had developed certain routines and ways of coping. Most participants prioritized their work, and as a result, they were often less functional at home after work. For instance, one participant explained that she consistently continued working despite her symptoms but frequently collapsed once she returned home, then needing to lie down depending on whether she first had to take care of her children. Another participant described structuring her day around her headaches, often waking up with symptoms already present and deliberately working from home so she could sit in a dark environment.

The treatment goals of patients were often met, reflecting less headaches. Most participants expressed a reduction in frequency, duration, and/or intensity. This led to increased energy, improved functioning both at home and at work, and greater availability for family. Additionally, the participants noted that the reduction in symptoms had a positive effect on their overall well-being, with many feeling happier and being able to be more themselves. Two participants felt that the care pathway was not beneficial, with one still undergoing treatment and seeking suitable treatment.

For many participants, symptom reduction was primarily achieved by finding the right medication, but many also received guidance on how to cope with the condition. This provided new insights and solutions. For example, due to the NP’s advice, agreements were sometimes made with the workplace on how to manage working with migraines. Participants also gained better strategies for taking their medication.

“Yes, they [headaches] are less severe. I used to have really bad attacks. About a year ago I had one of the worst, with vomiting all night. Now they are less intense. So there really has been a change. It feels like a miracle drug.” […] “That my life is more beautiful [with fewer migraine attacks], and that I am starting to rediscover what it is like to live with less headache.” – participant fifteen

Digital communication contributing to more accessible care

The main benefit of digital consultations is their accessibility, saving travel time, offering flexible scheduling, and avoiding the need to take time off work. Only a few participants expressed doubts about or had a strong preference against having a video consultation. This was mainly due to a lack of technical skills or previous experiences with technical problems during video calls. In one occasion, it was mentioned that technical issues during video consultations occurred and one participant noted that the camera was not positioned properly, resulting in a top-down view, which made it difficult to maintain eye contact with their NP during the video consultation. Participants felt comfortable asking questions through digital communication. Email was seen as accessible and efficient, with quick responses enhancing its usefulness. Additionally, it was easy to schedule and reschedule appointments.

Most participants had a positive experience with digital communication. The initial video consultation was particularly valued as a means of establishing a personal connection with the NP. However, digital consultations are not seen as a full replacement for in-person visits. Although nearly all participants were satisfied with the digital consultations, many preferred an in-person meeting, especially for the first consultation. For follow-up consultations, there was no strong preference between video calls and phone calls. Some found phone consultations sufficient for treatment evaluations, whereas others preferred video to maintain visual contact with their NP. Having the option to express preferences and request video calls when these better met individual needs was appreciated. Digital consultations felt sometimes more impersonal, as important aspects of communication can be lost without face-to-face interaction, making it harder to interpret certain details.

… a digital consultation is practical, because, well, I do not have to go anywhere myself and I can just do it from home or in between other things. – participant thirteen

… “I have to say that at the moment I’m receiving in-person treatment. So I do have to go there physically, and it is actually nice to see her, it feels a bit different. On the other hand, I did not mind at all when we were meeting only online. […] Still, I feel the contact becomes just a bit more personal when you meet face to face, or somehow a bit more familiar, whereas otherwise there is a slight sense of distance. I think perhaps finding a balance between the two would be good.” – participant six.

More insight into headaches due to the use of the digital diary app

Almost all the participants used the headache diary app provided by the care pathway to monitor their headaches. It was experienced to be an effective tool that offered both the patients and their NP an objective overview and clear insight into headache frequency. Some participants experienced the frequent reminders as overwhelming. One described this as “spam”, and a few felt the daily focus on symptoms was confronting.

Despite its usefulness, many participants suggested improvements to enhance the app’s usability, so that it became easier and more complete to fill out. Common issues included slow performance and limited response options. While the questions were generally clear, users noted a limited variety of answer options and missed the option to add notes for context and to help identify potential triggers. These remarks indicate a need for improvements that allow users to better capture their headache experiences. Additionally, having to complete the full questionnaire even on headache-free days and the inability to fill out the diary retrospectively were sometimes seen as a limitation. The app’s restriction to recording only one headache episode at a time further limited its usefulness when headache characteristics changed after registration, indicating that the app did not fully align with the fluctuating and dynamic nature of headache symptoms.

…For me it is become clear when a headache starts, and what phases you go through. It is become clearer, and I have become more aware of it by keeping track of it in the diary. […] That was also a big eye-opener for me. […] So it has given me a lot of insight. – participant five

Patient-centered care given by nurse practitioner

None of the participants had previously been treated by a nurse practitioner before participating in this care pathway. Initially, a few participants were skeptical about being treated by an NP instead of a doctor, but after introduction and discussing the role of an NP, these concerns were alleviated. With a few exceptions, the role of the NP was clear. Most participants had positive experiences with treatment from the NP, although two patients still expressed a desire to have a consult with a neurologist.

In regard to patient centered care, almost all participants felt taken seriously and listened to, showing both knowledge and empathy, the NP was actively involved in their care. Participants valued the recognition and understanding provided. The NP showed understanding to their individual situations and actively involved them in finding a treatment that suited their needs. As a result, participants experienced the treatment as personalized. They also described how their NP actively thought along with them and took sufficient time to discuss their concerns. However, a few participants felt unheard in certain situations, for example regarding treatment choices or when the NP did not consider a scan necessary. Other participants valued the flexibility to deviate from standard care when reassurance was needed. Many participants noticed a difference in treatment from other healthcare providers since some participants felt overlooked during previous treatments. Participants also felt that the nurse practitioner had more time and attention than a doctor did, which was also viewed positively.

And it is fine to talk to a doctor, that is not what I mean, but an NP seems maybe just a little less formal, which makes it easier to talk to. I liked that. She has more time than a doctor, which I also really appreciated. I felt very supported, as she really took the time to listen and work through everything with me. – participant twelve

What really stood out to me was, that when I shared something with them that they genuinely listened to my concerns. And that they were able to deviate for the standard policy. […] So, that means they really looked at the person’s story, instead of just entering data into a system and having it rejected by someone with higher authority who only cares about the numbers. – participant ten

Discussion

This study aimed to explore the experiences of patients with TTH, migraine and MOH in the nurse-led transmural headache care pathway. Exploring patients’ lived experiences has become increasingly important in healthcare research, as qualitative approaches help uncover how patients interpret and cope with their conditions and treatments [30]. Five main themes emerged: (1) expectations related to the care pathway, where patients expressed a desire for reduced headache burden and support in understanding and managing their condition; (2) effectiveness of treatment on everyday functioning, with many reporting fewer headaches and better daily functioning; (3) digital communication contributing to more accessible care, where digital care was seen as accessible and time-saving, although in-person visits were preferred for initial contact; (4) more insight into headaches due to the use of the digital diary app, which helped participants tracking headache frequency and gaining insight but with opportunities to improve the usability; and (5) patient-centered care given by nurse practitioner, where the NP was valued for being knowledgeable, empathetic, and supportive.

The efficiency and accessibility of digital communication emerged as key strength of the care pathway according to participants. The reduction in symptoms was also viewed positively by patients. According to patients’ experiences digital consultations could be conveniently scheduled around other activities and eliminated the need for travel. Van der Arend et al. (2024) reported that nearly 77% of participants considered video consultations to be an appropriate alternative to in-person visits [31]. Similarly, Polinsky et al. (2016) reported that more than half of the patients identified shorter waiting times as the primary reason for using telehealth, and 95% expressed high satisfaction with the technology for telehealth consultation, particularly the ability to see and hear the practitioner [32]. These findings are consistent with the present study, in which participants valued video consultations because they were time saving yet still enabling them to see their NP and establish a more personal connection than would be possible via telephone. According to patients’ experiences, most were generally satisfied with digital consultations, as they indicated that the video consultation still allowed them to see their NP, which made the interaction feel more personal and had a positive effect on the treatment relationship. However, a considerable proportion of this study participants preferred the initial visit to take place in person, emphasizing the importance of meeting their nurse practitioner (NP) face-to-face at the start of care. This aligns with the findings of the study of Andruskevicius et al. (2024), in which 67% of participants expressed a preference for a hybrid model of headache consultations in the future [33]. A recommended enhancement to the care pathway is therefore presenting the option between a digital or an in-person consultation for their initial appointment.

In this study, a diary app was used to support headache management. Tools that allow patients to document and reflect on their symptoms, such as diaries, have also been shown to support patient engagement in other healthcare contexts [34]. One of the main strengths of this app was its perceived value among participants for monitoring their headaches and gaining an overview. The app did not include features for medication tracking or headache-trigger identification, which some participants considered limiting as they sought greater insight into triggers. Although most users were satisfied with the existing set of questions, improvements in both functionality and response options appeared necessary. Incorporating items on established headache triggers, as reported by Bandarian-Balooch et al. [35], could enhance patients’ ability to recognize patterns in their headaches. Expanding the range of response choices and providing free-text entry fields would allow patients to add relevant contextual details and could help better identify their triggers. According to participants’ experiences, a further practical improvement would be to allow users to bypass the full questionnaire on days without headaches, thereby reducing the reporting burden and potentially improving adherence over time.

The nurse-led nature of the care pathway was also a key strength. It facilitated more patient-centered care, with patients valuing the nurse practitioner’s expertise, guidance, listening skills, and personal approach. A closer examination of participants’ accounts suggests that the perceived added value of the NP may be related to continuity of care, longer consultation time, and a communication style that integrates both medical and psychosocial aspects. Unlike traditional physician-led models, where consultations are often shorter and more episodic, this nurse-led led pathway appeared to provide relational continuity and structured follow-up. This may explain why participants experienced the care as more personalized and supportive. In addition, the transmural positioning of the nurse practitioner—bridging primary and secondary care—may have contributed to patients’ sense of coherence and continuity, reducing fragmentation often experienced in headache care pathways [36–38]. This bridging function can improve care integration and patient outcomes, reduce the workload for GP, and promote more rapid access to clinical advice and clinical care [39]. The study of Dusseldorp et al. (2020) reported that patients appreciated the ability of the NP to provide information on prognosis and recovery, time availability, accessibility and communication skills [36]. The NP supported patients in coping with both the condition itself and its impact on daily life, while helping them set goals to regain control over their lives [36, 37]. All participants emphasized that contact with the nurse practitioner helped them feel more in control of their condition and that they felt truly understood [36]. Another similarity is that patients highly valued the care provided by an NP and may be even more satisfied with the care they receive from their NP than from a doctor [36, 37]. These findings suggests that participants experienced the involvement of NPs as a valuable component of the care pathway. The NP’s role is highly valued, because NP-led care can match or exceed traditional physician-led care by combining medical and nursing expertise [14], what can contribute to more continuous and person-centered care. Previous systematic reviews have demonstrated that NPs across specialties can provide high quality, safe care in diverse health care settings [40], potentially enabling the care provided by the nurse practitioner to be extended to other headache patient groups.

It is becoming increasingly important for people with chronic conditions to learn how to effectively manage the physical, emotional, and social challenges in their lives. Improving patients’ awareness of symptoms and early warning signals is essential for effective disease management and timely care seeking [41]. Consequently, greater emphasis is being placed on health literacy and self-management, with increased attention to helping patients gain insight into their symptoms and supporting shared decision-making [42]. In the present study, patients expressed a desire for more insight into potential triggers, which may indicate a relatively high level of engagement in self-management. Although the diary app may have stimulated this interest, it is also possible that such engagement was already present among participants. Previous research has shown that positive experiences with digital health interventions among individuals living with chronic pain are associated with a better understanding of their condition, increased awareness of how symptoms affect their daily lives, and greater motivation to take an active role in managing their health [43]. More broadly, mobile health (mHealth) applications are increasingly integrated into clinical practice to support chronic disease self-management strategies, optimize care delivery, and improve health outcomes. Studies have shown that mHealth applications can engage patients more actively in their health care and may increase patients’ sense of empowerment. In addition, mHealth interventions have demonstrated potential in promoting self-management among patients other chronic diseases [44]. By combining digital monitoring with personalized guidance, this nurse-led transmural care pathway appeared to support the self-management of participants in this study through active engagement in managing their condition. The diary app facilitated symptom awareness, while consultations enabled shared decision-making.

Headache is one of the most common complaints presented by patients in primary care. This study explores an innovative care pathway for headache care that combines digital support with nurse-led care, offering a unique approach. Although further investigation is recommended, participants often described less headache symptoms after participation in the care pathway; however, these findings reflect experiential accounts rather than objectively measured outcomes. Although more research on the effect is needed, it may indicate that such pathways have the potential to address current healthcare challenges by improving effectiveness, accessibility, and patient outcomes. Broader implementation and ongoing refinement, together with strengthened collaboration with primary care providers, including general practitioners, are essential to ensure sustainable integration into routine practice and to optimize patient care.

Some strengths and limitations of this study should be considered when interpreting its findings. Although participants were informed that participation would not affect their treatment, social desirability bias cannot be excluded. Patients may have consciously or unconsciously moderated their responses to protect the therapeutic relationship. The generalizability of the results may be limited because the study was conducted within a specific context and the goal of achieving maximum variation with respect to gender and diagnosis was not fully met. Rich data were collected, providing detailed and valuable insights into participants’ perceptions, preferences, and needs. This can serve as a foundation for future research, offering opportunities to examine how these findings apply to broader populations and different care settings. Recall bias may have also played a role in this study, since not all patients received treatment within the care pathway at the time of the study. The care pathway may have evolved over time, which makes it possible that not all the responses during the interviews may not be entirely relevant to the care pathway, as it is presently implemented.

The theoretical framework (WHO Quality of Care and Proctor’s model) informed the development of the interview guide and therefore influenced the type of data collected, particularly by helping to capture broad and abstract concepts such as quality of care. However, the data were coded openly without applying a predefined coding scheme or using the framework as an analytic structure. Given the design of the interview guide, the framework may have implicitly influenced the data and the themes generated. Only after the completion of the analysis were the resulting themes related back to the elements of the theoretical framework. This was done to support interpretation and to help readers understand how the findings connect to established conceptual models.

Implications of this study are important for both NP supporting headache patients and headache patients themselves. However findings should be interpreted as context-specific experiential insights and provide only preliminary indications of potential effectiveness. Findings of this study can help NPs to better match care practice to individual patients. The findings revealed several areas for improvement and several suggested solutions. Following the adoption and implementation of these proposed suggestions, a subsequent evaluation of the care pathway will be necessary. In addition, future research should address the further development of headache diary app, as participants highlighted substantial opportunities for improvement in this area.

Conclusion

In conclusion, this qualitative study explored patients’ experiences with a nurse-led transmural headache care pathway combining digital and in-person care. This care pathway is experienced as valuable for its accessibility, perceived effect on headache symptoms, and the nurse practitioner’s expertise and personalized approach. Enhancements to the digital headache app and more comprehensive assessments were suggested (e.g., support in identifying triggers) and could further strengthen its contribution of the care pathway. Following treatment within the pathway, many participants expressed a reduction in headache symptoms which had a positive impact on their everyday lives. This study offers a context-specific insight into how patients experience this model of care. Further research is needed to examine whether the perceived benefits correspond with measurable clinical outcomes and whether similar experiences are reported in other healthcare settings.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

Cheryl van den Bovenkamp, Suzanne Geerts-van den Boogaard, Anneke J.A.H. van Vught, Mieke Heitkamp-van Deursen, and Lisa J.C. van Dongen contributed to the study conception and design. Cheryl van den Bovenkamp and bachelor nursing students (see Acknowledgements) contributed to the data collection. Cheryl van den Bovenkamp, Suzanne van de Pasch, Melanie van Kranen and Lisa J.C. van Dongen conducted the data analysis. The manuscript was written by Cheryl van den Bovenkamp and Lisa J.C. van Dongen. All the authors reviewed the manuscript. Cheryl van den Bovenkamp and Lisa J.C. van Dongen finalized the final version. All the authors agreed with the final version of the manuscript.

Funding

This study was funded by a grant from the Research Fund of CWZ (2024).

Data availability

The original data and scheme of the analysis process are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

This study does not fall under the Medical Research Involving Human Subjects Act (WMO), as it did not involve medical interventions or impose procedures on participants, nor did it involve the collection of sensitive personal data as defined under the Act. Therefore, formal approval from a Medical Research Ethics Committee was not required. In accordance with institutional policy, the study was submitted to the local review board of Canisius Wilhelmina Ziekenhuis for a quality check, ensuring that the study complied with relevant guidelines, including the Declaration of Helsinki [28] and the GDPR [29]. This review confirmed that the study complied to relevant guidelines and regulations and that there were no objections to its conduct (reference number: CWZ-nr. 2024-0026). All participants signed an informed consent form or gave permission orally prior to the interviews. The collected data and personal information were handled confidentially to protect the participants’ identity and integrity.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.