The social construction of the “good doctor”: Expectations of physicians among adults with NF1

Abstract

Neurofibromatosis type 1 (NF1) is a rare, genetically determined condition characterised by clinical variability, diagnostic uncertainty, and the need for long-term, multidisciplinary care. In this context, patients’ experiences are shaped not only by biomedical factors but also by interactions with healthcare professionals. This study explores how adults with NF1 define the characteristics of a “good doctor” based on their experiences within healthcare systems. A qualitative study was conducted using semi-structured, in-depth interviews with 93 adults diagnosed with NF1. An interpretive qualitative approach was adopted, and the data were analysed using Reflexive Thematic Analysis to examine how patients’ expectations toward physicians are formed in the context of ongoing care. Participants’ accounts revealed that the “good doctor” is understood as a context-dependent concept shaped by patients’ experiences rather than a fixed set of clinical competencies. While medical expertise was considered important, participants emphasised communication, empathy, and acknowledgement of patients’ perspectives and experiences. Experiences of delayed diagnosis, fragmented care, and inconsistent information were found to shape expectations toward physicians and influence trust in the healthcare system. Negative interactions, including dismissal of symptoms or lack of understanding, contributed to disengagement from care, whereas respectful, partnership-based relationships supported better coping with the condition. Patients’ expectations toward physicians are shaped by their long-term experiences of living with NF1 and navigating healthcare systems. The findings highlight the importance of integrating clinical expertise with patient-centred communication and coordinated care. Strengthening these aspects may improve patient trust, engagement, and overall quality of care in rare genetic conditions.

Background

Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder caused by pathogenic variants in the NF1 gene. Its clinical presentation is characterised by marked variability across the life course (Liao et al. 2025). NF1 is a neurocutaneous condition involving the development of tumours within both the central and peripheral nervous systems, affecting the brain, spinal cord, internal organs, skin, and bones (Tamura 2021). The condition affects approximately 1 in 3,000 individuals worldwide (Liao et al. 2025).

NF1 is associated with a high degree of clinical heterogeneity and unpredictability, which makes both diagnosis and long-term management particularly challenging. Approximately 50% of cases arise from de novo pathogenic variants, and although the condition shows near-complete penetrance, its severity and manifestation vary widely across individuals (Friedman 1993). NF1 is associated with an increased risk of both benign and malignant tumours (Kerashvili and Gutmann 2024). Early diagnosis, particularly at the pre-neoplastic stage, is therefore crucial for implementing appropriate cancer surveillance strategies (Wilson et al. 2021).

The diagnostic criteria for NF1, originally established by the National Institutes of Health in 1988, were based on common clinical features such as café-au-lait macules, intertriginous freckling, and cutaneous neurofibromas (1988; Hernández-Martín and Duat-Rodríguez 2016). Over time, these criteria were revised to improve diagnostic accuracy and to incorporate advances in genetic testing (Legius et al. 2021; Plotkin et al. 2022). The updated criteria incorporate both clinical features and molecular confirmation of pathogenic NF1 variants, as well as additional markers such as choroidal abnormalities, refined skeletal criteria, and updated terminology regarding optic pathway gliomas, thereby enabling earlier and more accurate diagnosis (Legius et al. 2021; Kehrer-Sawatzki and Cooper 2022). Studies indicate that these revisions reduce diagnostic time by an average of 113 days, primarily due to the inclusion of heterozygous pathogenic NF1 variants as a diagnostic criterion (Ho et al. 2022).

Patients with NF1 require care in specialised, interdisciplinary NF centres, which provide coordinated and individualised management tailored to the patient’s clinical profile (Karwacki et al. 2021; Karwacki 2025). Such centres offer access to diagnostic information, follow-up recommendations, guidance in case of disease progression, as well as comprehensive treatment and specialised therapeutic programmes. Care is delivered by multidisciplinary teams operating according to standardised diagnostic and therapeutic protocols (Matthies et al. 2023).

In practice, many individuals with NF1 encounter difficulties at multiple stages of the healthcare trajectory. Limited clinical awareness contributes directly to a prolonged and complex diagnostic process, with many patients receiving an accurate diagnosis only after several years (Karwacki et al. 2021; Karwacki 2025; García-Martínez and Hernández-Martín 2023; Kowal and Domaradzki 2026). This so-called “diagnostic odyssey” involves multiple misdiagnoses, consultations with numerous specialists, and prolonged uncertainty, often resulting in worsening health outcomes, inappropriate treatment, and substantial emotional and financial burden (Cnossen et al. 1997; Ablon 1999; Kowal and Skrzypek 2024; Dyer et al. 2024; Kowal and Domaradzki 2026). At the same time, patients with NF1 face significant systemic barriers, including limited access to specialised centres, adequately trained professionals, genetic diagnostics, and psychosocial support. In Poland, these challenges are further exacerbated by a shortage of dedicated centres, particularly for adult patients (Oates et al. 2013; Crawford et al. 2015; Karwacki 2020; Merker et al. 2021; Kowal and Skrzypek 2024).

While these biomedical and organisational aspects are central to the management of NF1, they do not fully capture how patients experience and evaluate medical care in everyday clinical encounters. Ensuring high-quality care, therefore, requires not only medical knowledge and clinical expertise but also access to diagnostic resources and effective collaboration within multidisciplinary teams (Cortés-Martín et al. 2023). At the same time, research on patients with rare diseases, including NF1, highlights that healthcare is not limited to diagnostic and therapeutic dimensions but also has a crucial relational component. Interactions with healthcare professionals play a key role in shaping trust and engagement in the treatment process, and their quality may either support or undermine therapeutic cooperation (Budych et al. 2012; Borracci et al. 2020; Wang et al. 2023; Kowal and Domaradzki 2026).

Importantly, these interactions are characterised by a form of epistemic asymmetry, in which physicians are positioned as authoritative holders of biomedical knowledge, while patients must navigate uncertainty, partial understanding, and dependence on expert interpretation (Budych et al. 2012; El-Haddad et al. 2020). In the context of rare diseases such as NF1, this asymmetry is often intensified by limited clinical expertise and fragmented care, placing additional interpretive and navigational burdens on patients.

Diagnostic experiences of individuals with NF1 often involve delays, fragmented care, and situations of misunderstanding, dismissal of symptoms, and inconsistent communication, all of which influence how patients perceive physicians and the healthcare system as a whole (Currie and Szabo 2019a, 2019b; Kowal and Skrzypek 2024; Kowal and Domaradzki 2026). At the same time, studies show that lack of empathy, questioning patients’ credibility, stigmatising responses, and inadequate communication may lead to a loss of trust and withdrawal from healthcare, whereas relationships based on partnership support better understanding of the condition and coping with uncertainty (El-Haddad et al. 2020; Merker et al. 2021).

Within these interactions, patients do not simply evaluate physicians against predefined professional standards; rather, they actively construct the meaning of what constitutes a “good doctor” based on their cumulative experiences of care. These representations emerge from concrete encounters, including both supportive and negative experiences, and serve as interpretive frameworks through which medical care is assessed.

Thus, the figure of the “good doctor” should be understood not as a fixed set of attributes, but as a relational and socially constructed category, shaped by patients’ trajectories through the healthcare system and their efforts to make sense of illness and care. It functions as a key reference point in evaluating medical encounters and articulating expectations toward healthcare professionals (Borracci et al. 2020; Grundnig et al. 2022b; Wang et al. 2023; Diasio and Rajtar 2025).

Therefore, this study aimed to explore how adults living with NF1 construct the notion of the “good doctor” and which characteristics of medical professionals they consider most important. Particular attention was paid to identifying the competencies, attitudes, and communicative practices that gain significance in the context of a rare disease requiring long-term, multidisciplinary care and involving diagnostic and therapeutic uncertainty. The study also sought to examine how living with NF1 shapes expectations toward medical knowledge, the therapeutic relationship, recognition of patient expertise, and the organisation of healthcare.

Materials and methods

Study design

This article presents an in-depth thematic analysis conducted as part of a broader qualitative research project led by the first author (KK), focusing on various aspects of living with NF1. While previous publications have examined aspects of living with NF1, including the altered body, family relationships, reproductive decision-making, and the diagnostic process (Kowal and Skrzypek 2024; Kowal and Domaradzki 2025, 2026), the present study focuses on the socially constructed image of the physician caring for adult patients with NF1 and patients’ expectations toward medical professionals. The analysis focuses on how patients evaluate physicians’ clinical competence, communication, and the relational dimension of care.

Although based on the same dataset, this study addresses a distinct research question concerning the construction of the “good doctor” and patients’ expectations toward medical professionals.

Due to the limited qualitative research on everyday medical experiences in NF1, this study employed an interpretive approach to explore how participants understand physicians’ roles, attitudes, and practices across the course of living with the condition. The study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. 2007). These guidelines informed the transparent reporting of the study design, data collection, and analytic procedures, enhancing the clarity and rigour of the qualitative approach.

Ethical issues

The study adhered to the principles of the Declaration of Helsinki (2000 revision) (Sawicka-Gutaj et al. 2022), and ethical approval for the study was granted by the Bioethics Committee of Nicolaus Copernicus University in Toruń, Collegium Medicum in Bydgoszcz (KB 617/2017).

All participants received comprehensive information about the study, including its purpose, procedures, voluntary nature, and confidentiality safeguards, as well as their right to withdraw at any time without consequences. Due to the remote format, informed consent was obtained verbally and audio-recorded at the beginning of each interview.

Participants were encouraged to speak openly about their experiences, including potentially sensitive aspects related to health, identity, and family life, while retaining full control over how much they chose to disclose. They were reminded that they could pause or discontinue the interview at any stage without providing a reason. Given the potentially emotional nature of discussing diagnostic experiences, particular attention was paid to ensuring a respectful and supportive interview environment.

Data protection measures were developed in collaboration with the Data Protection Officer at Jan Długosz University in Częstochowa. Participation was unpaid. All recordings and transcripts were anonymised by removing identifying information, applying pseudonymisation, and adjusting contextual details where necessary to prevent identification. Data were securely stored on a password-protected, encrypted institutional server, accessible only to the principal investigator. Personal identifiers were stored separately from research materials in accordance with the EU General Data Protection Regulation (GDPR).

Study participants

Eligible participants were identified in collaboration with two physicians working in a specialised outpatient clinic for individuals with neurocutaneous disorders, who acted as gatekeepers. They informed patients meeting the inclusion criteria about the study and invited them to contact the principal researcher directly. In total, 107 individuals were approached.

The study used a purposive sampling strategy targeting adults with a medically confirmed diagnosis of NF1. Inclusion criteria were: age ≥ 18 years, confirmed NF1 diagnosis, Polish language proficiency, Internet access and ability to use it, willingness to participate, and provision of informed consent. No further exclusion criteria were applied.

There was no prior relationship between the researcher and the participants. The researcher did not have personal experience of NF1 and approached the study from an academic perspective, which was communicated to participants.

Between April and December 2020, 95 individuals responded to the invitation and contacted the principal investigator, who conducted all interviews. Eligibility was confirmed during initial contact based on self-reported diagnosis and characteristic symptoms of NF1. All respondents met the inclusion criteria. Two individuals withdrew before participation due to time constraints.

Research tool

The interview guide was developed by the first author based on a review of literature addressing the experiences of individuals living with NF1 and related neurocutaneous conditions. Its structure was further refined in consultation with a clinician experienced in the care of patients with NF1 to ensure clinical relevance and sensitivity to participants’ perspectives.

While a detailed description of the full interview guide and its development has been presented elsewhere (Kowal and Skrzypek 2024; Kowal and Domaradzki 2025, 2026), the present study draws on those parts of the interviews that addressed participants’ experiences of medical care and interactions with healthcare professionals. These included questions concerning the course of treatment, experiences of surgical interventions, evaluations of contacts with physicians, difficulties encountered in medical encounters, and perceptions of physicians’ knowledge and preparedness to manage NF1. Particular attention was given to participants’ expectations toward doctors and the meanings they attributed to the notion of a “good doctor.”

The semi-structured format enabled participants to elaborate freely on issues they considered most important, allowing for an in-depth exploration of relational and communicative aspects of medical encounters. In addition, participants completed a brief set of sociodemographic questions.

Data collection

The empirical material was collected between August and December 2020. Owing to COVID-19-related constraints, all interviews were carried out remotely, either by telephone or using online platforms.

An interview guide was used to support a semi-structured format, while allowing participants to develop their narratives freely. The conversations focused on the lived experiences of NF1 and the meanings participants attributed to these experiences. The interviewer adopted a non-directive approach, encouraging openness, including in relation to sensitive issues. Participants were reminded that they could decline to answer specific questions or terminate the interview at any point.

Interviews were conducted individually and typically took place in participants’ homes, which facilitated a more comfortable and secure setting for discussion. Each interview lasted approximately 90 min. With participants’ permission, all conversations were audio-recorded and later transcribed verbatim.

In preparing the transcripts, attention was paid not only to verbal content but also to selected paralinguistic features (e.g., pauses, hesitations, shifts in tone) when these were relevant for interpretive purposes. The dataset comprised a total of 134 h, 26 min, and 35 s of audio recordings.

Given the depth and internal consistency of the material, no additional interviews or follow-up contacts were undertaken. Participants did not request transcript verification or introduce amendments.

Data analysis

An interpretive analysis was undertaken using Reflexive Thematic Analysis (RTA) following Braun and Clarke (Braun and Clarke 2019, 2023, 2024). RTA was particularly well-suited to this study because it allows for an in-depth exploration of how participants construct and interpret their diagnostic experiences, rather than merely describing surface-level patterns. Its flexibility made it possible to capture the complexity, ambiguity, and emotional dimensions of the diagnostic journey, which are central to understanding lived experiences of NF1.

The analytic approach was inductive and focused on participants’ explicit accounts, while being situated within a constructivist-interpretivist framework that emphasises meaning-making in context. Rather than following a fixed sequence of analytic steps, the process unfolded recursively and reflexively, allowing ongoing movement between data, codes, and emerging interpretations. The first author engaged in prolonged immersion in the dataset through repeated reading of the transcripts and the development of analytic notes, attending to patterns related to experiences of medical care, communication, and relationships with physicians. Coding was carried out manually and remained flexible, evolving from descriptive labels toward more interpretive formulations as familiarity with the data deepened.

Through an iterative process of comparison and reinterpretation, codes were organised into broader patterns of shared meaning, which were gradually developed into candidate themes. These themes were continuously refined through close engagement with the data, with attention to their internal coherence, conceptual distinctiveness, and relevance to the research focus. In particular, the analysis sought to capture how participants discursively constructed expectations toward physicians and negotiated the meaning of a “good doctor” within their own experiential contexts.

Consistent with the principles of RTA, themes were not derived from frequency counts or saturation-based criteria (Braun and Clarke 2021). Instead, analytic sufficiency was achieved through sustained and iterative engagement with the dataset, aiming for a coherent and meaningful interpretive account. Illustrative extracts were selected at a later stage to support and exemplify the analytic claims, rather than to generate them.

Although the first author was responsible for data collection and primary coding, the second author contributed to the analysis through ongoing consultation and critical engagement with the developing interpretation. This collaborative dialogue functioned as a form of analytic triangulation, strengthening the credibility and depth of the interpretation. Throughout the analytic process, both authors engaged in reflexive dialogue, supported by memo-writing and critical self-reflection, to remain attentive to how their assumptions and perspectives might shape the construction of themes.

Results

Key characteristics of the study participants are presented in Table 1. The sample comprised 93 adults diagnosed with NF1, of whom 74.2% were women (n = 69) and 25.8% were men (n = 24). Participants were aged between 18 and 64 years (M = 36.69, SD = 10.13). The mean age at diagnosis was 17.55 years (SD = 12.18), with diagnoses occurring across different life stages. Most participants were diagnosed either in childhood (≤ 12 years; 41.9%) or in adulthood (≥ 19 years; 39.8%), while a smaller proportion received their diagnosis during adolescence (13–18 years; 18.3%).

Table 1.

Characteristics of participants (N = 93)

Characteristic	N (%)/Mean (SD)
Age (years)	36.69 (10.13; 18–64)
Age at diagnosis (years)	17.55 (12.18)
Gender (female)	69 (74.2)
Higher education	42 (45.2)
Married	33 (35.5)
Urban residence	64 (68.8)

Two overarching themes with associated subthemes were generated: (1) expectations toward NF1 care, encompassing the need for clear and trustworthy information, competent and holistic disease management, and active, structured care coordination; and (2) characteristics of a “good doctor,” including knowledge and clinical competence, empathy and a humanistic approach, open and proactive communication, and attentive listening with recognition of the patient’s experience (Table 2). Together, these themes show that patients construct the figure of the “good doctor” at the intersection of epistemic competence, relational engagement, and active care coordination, highlighting that effective medical practice in NF1 involves guiding patients through a clinically unpredictable trajectory and managing illness ambiguity in a relationally responsive manner.

Table 2.

Themes and subthemes emerging from qualitative analysis

Theme	Subtheme	Interpretive description
1. Expectations regarding the management of NF1	1.1. Clear and reliable information about the disease	Patients expect physicians to provide clear, reliable, and comprehensible information about NF1, which helps them make sense of an uncertain and variable condition and reduces illness ambiguity.
	1.2. Competent and comprehensive management of the disease	Care is evaluated through the physician’s epistemic competence, including the ability to recognise NF1, make sound clinical decisions, and ensure appropriate diagnostics, monitoring, and referrals.
	1.3. Active and structured management of the disease	Patients emphasise the need for active guidance, planning, and coordination of care, which introduces continuity and predictability into an otherwise clinically unpredictable disease trajectory.
2. Characteristics of a “good doctor”	2.1. Clinical knowledge and competence	Physicians’ knowledge of NF1 constitutes a key condition of trust, shaping patients’ confidence in diagnosis and treatment, and management of uncertainty.
	2.2. Empathy and humanistic approach	Empathy, enacted through responsiveness and respect, functions as care in practice and shapes patients’ experience of medical encounters.
	2.3. Open and proactive communication	Clear, responsive, and transparent communication is understood as a core component of competence that shapes trust, safety, and patient engagement.
	2.4. Attentive listening and recognition of the patient’s experience	Attentive listening functions as an epistemic practice, enabling recognition of patients’ experiential knowledge, supporting more accurate diagnosis and collaborative care, and thereby supporting partnership.

Expectations regarding the management of NF1

This theme captures participants’ expectations toward physicians in relation to the medical management of NF1, which extends beyond the mere provision of treatment and encompasses the organisation, coordination, and communicative framing of care. Participants consistently emphasised the need for structured, informed, and proactive management of the disease, in which physicians act not only as clinical experts but also as guides navigating uncertainty. These expectations reflect a desire for epistemic clarity, clinical competence, and continuity of care, all of which are experienced as essential for maintaining a sense of control and trust in the context of living with NF1.

Clear and reliable information about the disease

The expectations patients formulate toward physicians are primarily centred on the need for clear, reliable, and understandable medical information. This includes a clear explanation of the disease by the doctor, specific answers to the patient’s questions, the absence of informational chaos, and systematic updates about developing symptoms. It represents a central epistemic need among the studied NF1 patients, who want to know what is happening in their bodies, what they can expect as the disease progresses, and how to understand their own bodies. According to the participants’ accounts, medical information is not treated merely as a transfer of facts, but as a tool for regulating patients’ anxiety, building trust in the doctor-patient relationship, and maintaining or regaining a sense of control over the illness.

Respondents expect physicians to identify potential risks, outline possible scenarios of the disease course, and help them understand these outcomes. At the same time, they clearly reject vague and overly reassuring messages from doctors, preferring honesty and specificity – even when the information provided may be emotionally difficult.

I certainly expect this kind of support, a sense of security, that the doctor will be able to say what the risks are, what else may happen, to assess whether it is cancer or whether it is a neurofibroma. (Interview 91)

I definitely expect honesty and simply the truth. Not saying that we will try, that it will be fine, but simply honesty, saying it directly. Calling surgery, consequences. Saying directly what and how. I think that everyone wants the doctor to say directly what it is about, what is happening, what may happen next. (Interview 84)

In a disease with such uneven progression as neurofibromatosis type 1, regularity of communication is also important. The participants do not expect a one-time explanation of their health situation from the physicians managing their care, but ongoing information that will be adequate to their changing symptoms. They also emphasise the importance of the comprehensibility of the doctor’s language and the doctor’s willingness to explain professional medical terms. Clear information from the doctor, according to the collected data, also constitutes a condition of epistemic trust in the physician. The participants clearly expect that the information about the disease communicated by the doctor will be based on the doctor’s competence, and not on assumptions.

I expect more information from doctors, that is, for them to keep me informed on an ongoing basis about ailments, about symptoms. (Interview 83)

What I expect from doctors above all is that they listen to me, that they understand me, and that they speak to me in such a way that I can understand them. (Interview 64)

I expect specific information from the doctor about what tests I should have done, what is worth checking, what to pay attention to, for the doctor to guide me as well, where I should go, and where I could possibly seek help (…). That these would be certain pieces of information, and not that the doctor tells me that he thinks something, as I have heard more than once. I expect something certain, so that I can also feel calm that I have found a doctor whom I can trust 100%. (Interview 78)

Competent and comprehensive management of the disease

Participants expect physicians to have competence in the field of a rare disease, such as neurofibromatosis, combined with clinical experience in managing patients. In respondents’ narratives, a doctor’s competence is not understood as abstract medical knowledge, but as the practical ability to manage a patient with NF1 in a rational, comprehensive, and appropriate way. Patients expect a reliable assessment of their health condition and professional care that gives them the sense that the doctor “knows what they are doing.” A key element of competence in physicians managing NF1, according to the participants, is the ability to appropriately guide the diagnostic process – both in terms of initiating necessary tests and avoiding unnecessary or excessive procedures. Respondents strongly emphasised the value of clinical rationality and physician experience, which allow distinguishing between necessary interventions and those that burden the patient without providing real benefit. The doctor’s competence and experience play a stabilising role in the experience of NF1. They are a condition for participants’ trust in the physician, their sense of security, and their belief that the disease is being managed by a medical professional.

I expect a thorough examination in relation to my disease. That they will simply do all the necessary tests, and I will go home. The doctor is supposed to ensure good care, and that is all. I expect the same in the case of my child (…). (Interview 92)

I have expectations of proper guidance, appropriate diagnostics, and avoiding unnecessary tests that do not need to be done in my case. I know stories where doctors are able to refer patients for a series of tests that are completely unnecessary at a given moment and can be avoided. I trust the doctor if the doctor has a plan for me, and then I will follow it. (Interview 86)

Participants expect physicians they encounter along their illness trajectory to be specialists in phakomatoses. At the same time, they are aware that experience in working with patients with neurofibromatosis is a scarce resource and unevenly available to patients in Poland. Because NF1 is a multisystem disease requiring coordinated and interdisciplinary care, an important theme is also the expectation of a holistic understanding of the disease. Patients with NF1 expect physicians to understand the entirety of the condition, its complications, and long-term risks. Therefore, in this context, the competence expected by patients also includes awareness of one’s own limitations and the ability to appropriately refer the patient onward to relevant specialists and centres.

I expect effective, professional help from doctors, for the physician to know what this disease is associated with and to refer me to a specialist who will rule out possible complications. In my case, this involves a cardiologist, an ophthalmologist, and a neurologist. (Interview 82)

I expect doctors to try to understand the whole picture and take a comprehensive approach to the patient, not a selective one. Because we, patients with NF1, have a high predisposition to heart attacks and cancers. This disease is, in fact, a series of various complex symptoms. I expect general practitioners to refer patients to a specialised centre. (Interview 73)

While expecting competence from physicians, participants also emphasised a relational aspect in their accounts. Doctors caring for patients with NF1 are expected to have a communicative culture, sensitivity, and a certain restraint in communication. The lack of such competencies is experienced as an additional emotional burden, deepening the sense of being misunderstood or humiliated, and leading to a weakening of trust in the specialist. At the same time, respondents highlight in their expectations the need for an individualised approach from the physician, taking into account different coping strategies among patients with a rare disease.

I would like doctors to treat patients more respectfully (…). For them to sometimes hold back and not say everything they think. (…) I even heard a doctor say: “it is disgusting.” That was definitely not pleasant for me, and it was quite a shock. It is hurtful for the patient. (Interview 56)

Every patient should be approached individually, because each person has a different attitude toward their illness and life. Some react to illness more emotionally and experience their situation in a more dramatic way. Others have a more direct and open attitude toward their own illness. In my case, it looks exactly like this. (Interview 53)

Active and structured management of the disease

Respondents expect proactive, systematic management and monitoring of the disease from the physicians caring for them. In the context of the high unpredictability of NF1 progression, this is expected to include the physician designing a plan of examinations, regular check-ups, initiating diagnostic procedures, and overseeing the course of the disease. The participants’ expectations express a need for the doctor to act as a guide in managing a rare disease, rather than merely someone who “puts out fires.” They expect the physician to coordinate care and systematically monitor the patient’s health status, rather than only responding to newly emerging symptoms of neurofibromatosis.

In respondents’ accounts, there was a clear expectation that physicians would actively indicate further steps in the management of NF1, without leaving ambiguity or unspoken assumptions in this area. They emphasised the need to receive concrete guidance regarding next steps, ways of proceeding, and possibilities for preventing further health problems. The participants also expected a clear monitoring plan for the disease, specifying the frequency of follow-up examinations and the symptoms that require particular attention.

For them to help me, to tell me what I should do next, how I should proceed, how to protect myself from other diseases, and not just: “Please be careful.” (Interview 87).

I expect such indications on what I should focus on, what I should be doing, how often, what to pay attention to, and what symptoms. How often should I do full examinations? I expect information about what I should actually, in a way, be concerned about. (Interview 65)

In respondents’ accounts, there was also an expectation that physicians themselves would initiate diagnostic actions rather than leaving this initiative to the patient. This concerns systematic checking of whether neurofibromatosis causes changes in other parts of the body. The participants are aware that NF1 manifests not only externally but may also involve internal organs; therefore, they expect examinations that allow potential changes to be detected at an early stage. Some respondents also indicated the need for physician initiative in proposing additional examinations or consultations related to family planning.

I would like to be thoroughly examined once a year to check whether these tumours are not growing, but for several years, I have not been able to obtain a simple CT scan or MRI. (Interview 62)

I have some concerns related to starting a family, which is why I expect them to propose an additional cycle of tests on their own initiative, to find out to what extent this may be a burden for my future child. So far, no doctor has ever taken such an initiative or suggested this type of examination in this direction. It will rather be my initiative than the doctors’. (Interview 69)

Characteristics of a “good doctor”

This theme captures how participants construct the figure of a “good doctor” through their lived experiences of care. This construct emerges as a multidimensional configuration of clinical, communicative, and relational competencies. Participants’ accounts reveal that being a “good doctor” involves not only medical expertise but also the ability to engage with patients as persons, recognise their experiential knowledge, and navigate the inherent uncertainty of NF1. The qualities identified in this theme reflect a shift from a purely biomedical model toward a more relational and patient-centred understanding of medical professionalism.

Clinical knowledge and competence

According to the patients studied, a key characteristic of a good physician is having medical knowledge and familiarity with neurofibromatosis type 1. In the respondents’ accounts, the doctor’s knowledge in managing NF1 patients is presented as a fundamental condition of the physician’s credibility and professionalism, and consequently of patient trust. A good doctor knows and understands the specifics of NF1, is able to make an accurate diagnosis, provide reliable information, and knows how to guide the patient in terms of further diagnostics and possible treatment. Respondents emphasised that in the case of a rare disease, it is particularly important that the physician has specialised knowledge about the condition, which patients assessed based on the doctor’s manner of conducting the consultation. The communication style of a competent physician involves clear and concrete transmission of medical information. However, the competence of a good doctor should not consist solely of possessing knowledge, but also of being willing to seek information about the disease in situations of diagnostic uncertainty. According to the participants, a good doctor is an engaged physician who is committed to solving the patient’s problem and knows how to guide further treatment. The ability to organise subsequent medical care was strongly emphasised by the respondents.

Above all, a good doctor is the one who has knowledge and who, in some way, builds my trust through it. (Interview 78)

An example of a good doctor is my geneticist, whom I visit. (…) If she does not know something, she is able to find out and even call me back on her private phone and tell me if something is bothering me. (Interview 56)

A good doctor knows their field. They know what is what, what it is connected with, whom to refer the patient to, and how to help in a given disease entity. (Interview 82)

Empathy and a humanistic approach

Among the characteristics of a good physician, participants include empathy, understood as showing the patient understanding, respect, and kindness. In the respondents’ narratives, empathy appears as a key element of the doctor-patient relationship. In a good doctor, empathy goes beyond the act of conversation and listening to the patient. It is a broader relational and moral attitude of the physician, encompassing their way of being, responding, and engaging in the patient’s situation. Respondents describe empathy as practised care, which is realised through action rather than solely through communication.

Empathy is defined by the patients studied primarily as “showing heart to the patient” and being a human being in the medical relationship, rather than only a specialist. It stands in opposition to a cold, distant approach of the physician. As framed by the respondents, empathy appears as a characteristic that humanises the medical relationship. It is associated with recognising the patient as a whole person, and not merely a medical case. A physician equipped with such understanding empathy moves away in the relationship with the patient from biological reductionism toward a more holistic approach to the patient.

In my opinion, a good doctor is an empathetic one who, above all, shows a bit of heart. And respects the patient. (Interview 92)

A good doctor should be (…) someone who looks at the person, not at the disease entity. They should be empathetic. (Interview 42)

I value it when a doctor approaches me as a whole patient, that I am not cannon fodder for surgery and done, next. (Interview 1)

An important dimension of empathy is entering the patient’s situation, adopting the patient’s perspective, and understanding their experience. For the respondents, physician empathy means going beyond the formal professional role and taking into account the subjective experience of illness. Participants emphasise that empathy is manifested in the doctor’s genuine engagement in the patient’s situation, rather than in a superficial contact. It is about the physician’s real presence in the treatment process, not a merely apparent presence limited to formally fulfilling duties. In the respondents’ accounts, empathy has a practical dimension – it signifies a readiness to help and take action on behalf of the patient. It is active care realised through action, while avoiding the devaluation of the patient’s experience.

A good doctor is one who can put themselves in the patient’s shoes, who does not look only from the perspective of doctors and from the other side of the desk, but is able to empathise with the patient’s role and will try to explain, guide, and reassure them. (…) So that they are truly with the patient to the end, and not just tick off the visit and that’s it. (Interview 66)

A good doctor is someone who is empathetic and tries to help in some way. Not someone who dismisses what I say, but someone who has understanding and a willingness to help. (Interview 92)

Empathy is a characteristic of a good physician that enables the creation of a patient relationship based on respect and non-hierarchical interaction. The NF1 patients studied emphasise that an empathetic doctor does not build distance grounded in their professional position, but instead establishes a more partnership-based relationship. Physician empathy in this context implies a reduction of power asymmetry and treating the patient as a partner. Some respondents also stress that empathy should be balanced with professionalism. It should not involve full emotional identification with the patient, but rather a controlled sensitivity within the physician’s professional role.

A good doctor is also friendly towards the patient and willing to talk, and not condescending or acting as if they are superior just because they are a doctor. (Interview 68)

A doctor should be empathetic, but of course not excessively so, because they cannot cry over every one of my neurofibromas. (Interview 42)

Open and proactive communication

Participants pointed to the importance of conversation with the patient and providing explanations about the disease. In this context, the doctor’s communicativeness appears as a practice of building patient understanding and safety. According to the respondents’ accounts, it does not merely involve answering the patient’s questions, but also the active initiation of information sharing by the physician. The expectation of this characteristic reveals a significant asymmetry: patients with a rare disease often do not know what to ask the doctor, and this lack of knowledge limits their ability to participate in the conversation. In line with the meaning present in the respondents’ narratives, the doctor’s communicativeness plays a compensatory role, as it helps to balance the patient’s knowledge deficit regarding NF1. Thus, communicativeness in physicians caring for patients with phakomatoses is not only a communication style but also a form of epistemic responsibility. It is also defined by respondents as a condition for the patient’s sense of agency and subjectivity.

A good doctor is one who says a lot on their own, who does not need to be dragged for information. Because sometimes, when I go to a doctor, I, for example, do not know what to ask, because I do not know the disease (…). They should simply treat the patient as a patient, and not as someone who is expected to know what it is about. They should simply explain so that the patient feels safe and leaves with knowledge about their disease and what to do. (Interview 91)

Good doctors are those who talk with the patient. I do not like those who do not even look at the patient or pay attention to them. (Interview 25)

Participants treat explaining the disease as an element and indicator of physicians’ professionalism, an integral part of their medical competence, and not merely a “nice addition.” Respondents associate the physician’s explanation of the disease with other qualities such as precision, reliability, and attentiveness to the patient. Communicativeness, according to the participants, is a process rather than a one-time act. It is not about a single transfer of information to the patient, but about continuous explanation and clarification that corresponds to the informational needs of a person with NF1. In the respondents’ view, a good doctor is one who not only conveys knowledge about the disease but is also iterative – remaining open and cognitively accessible, and ready to provide further explanations. The experience of a lack of communicativeness among the physicians encountered by the respondents makes communicativeness a distinctive trait, going beyond institutional minimum standards.

For me, a doctor does not have to talk a lot, (…), but the visit should not last five minutes. A good doctor is the one who explains everything properly, and if I have any doubts, simply answers them. And not that, okay, fine, end of visit, and I leave without learning anything. They should be open. They should say everything in concrete terms, ask about me, and not only about what they see, and that’s it. They should find out how I function, how everything is going, what things look like at home. Or what has happened since the previous visit, whether anything has appeared, whether anything has disappeared, whether anything has come up, or whether any specialist has been added. (Interview 70)

Participants associate communicativeness with honesty, directness, and clarity of the physician’s message. At the same time, they are aware that such communication may be difficult, but consider it more desirable than its absence. According to respondents’ accounts, the physician’s honesty eliminates patient uncertainty, prevents speculation, and grounds the patient in the reality of the illness process by increasing awareness and preparing them for the possible course of the disease. Some respondents also emphasise the importance of open communication as a way to de-formalise the relationship with the patient. In this case, the relationship becomes more “normal,” as tension is reduced, the distance between interaction partners decreases, and a space is created in which the patient can function more freely.

Good doctors are those who are able to speak honestly, openly saying what they think about a given issue, whether it concerns symptoms or what something may be related to. I know that some are afraid of this kind of honesty. I really value honesty because I have a high level of self-awareness, and when I do not know something, it bothers me. (Interview 28)

A good doctor is one you can talk to in a relaxed way, like I am talking with you now. In my opinion, that is a good doctor – someone with whom we can talk about anything, in a very easy-going and stress-free way. (Interview 41)

Attentive listening and recognition of the patient’s experience

Respondents frequently emphasise the importance of a physician who listens to the patient and takes their experience of illness into account. Listening to the patient appears in their accounts as an element of respect and serious treatment of the patient. Attentive listening is described as an absolute foundation of being a good doctor, rather than just one of many traits. It is not an addition to the diagnosis, but a prerequisite for it. Without active listening, the doctor-patient relationship loses its basic structure. The experience of being “not heard” by a physician (with statements ignored or considered irrelevant or incorrect) is perceived by respondents as a form of invalidation of the patient and their knowledge of the illness.

Definitely, the doctor listens, because I hate it when I tell the doctor one thing and he tells me another, and what I say, he has it somewhere far away, who knows where. That is probably the basic thing. (Interview 84)

A good doctor is the one who will listen to what I would like to say. (Interview 77)

Attentive listening to the patient serves an epistemic function here. A physician who listens to the patient recognises them as a source of knowledge about the disease. Taking symptoms seriously is, in this context, a matter of the patient’s credibility. In the analysed statements, listening to the patient is associated with the recognition that the patient possesses important diagnostic information, but also has the right to interpret their own experience. However, this does not refer only to passive “hearing out” of the patient, but also to understanding their perspective, responding to their experiences, and incorporating the obtained information into further medical action. According to respondents, active listening by a physician is one that leads to reaction, decision-making, and cooperation. Attentive listening as a skill of a good doctor prevents reducing the patient to a case, as it enables seeing the patient as a whole person, taking into account the context of their life.

A good doctor is the one who listens to the patient and their symptoms, and looks at the case more broadly than just through the lens of their own speciality. (Interview 55)

A good doctor is the one who tries to help the patient and does not criticise the patient in any negative way. They try to listen to what the patient says and do not question their words. (Interview 58)

I tell him something, and he responds: “Okay, so listen, we will do this and that.” I simply like such doctors. (Interview 84)

An important element of listening, according to respondents, is also its non-verbal dimension. A key indicator of the physician’s attentiveness and presence is, in the participants’ view, eye contact with the patient. Eye contact is interpreted as a sign of engagement, evidence of the doctor’s presence, and a signal that the patient is being taken seriously.

And an important trait for me is how the doctor talks to me and looks me in the eyes, because if they talk to me while looking at a sheet of paper or at the table, then they are not a doctor to me. (Interview 84)

Discussion

This study shows that patients with NF1 construct the notion of a “good doctor” primarily around expectations of reliable medical knowledge, competent clinical management, and clear, trustworthy information about the course of the disease. These results indicate that such expectations are not abstract ideals but emerge from concrete interactions, in which patients seek not only clinical expertise but also guidance, continuity, and relational engagement. In this context, “good doctoring” is grounded in the physician’s ability to provide clear information, make sound clinical decisions, and actively guide the patient through a clinically unpredictable trajectory characteristic of NF1. At the same time, competence is expected to be enacted in a relational manner – through communication, empathy, responsiveness, and recognition of the patient’s perspective. This reconfigures the figure of the physician from a distant authority into a responsible partner who combines expertise with relational attentiveness in managing clinical uncertainty, which becomes a central organising principle in NF1 patients’ narratives. Taken together, these findings can be understood as reflecting three interrelated aspects of “good doctoring”: epistemic competence, relational enactment grounded in care as practice, and organisational responsibility. Thus, the accounts presented in this study highlight several important aspects of patients’ experiences and expectations and point to key dimensions of “good doctoring” as a relational and practice-based construct.

Firstly, the findings highlight that for patients with NF1, the notion of a “good doctor” is grounded primarily in expectations of reliable medical knowledge and competent clinical management, which constitute the fundamental basis of trust and effective care. In the case of NF1, where diagnosis is largely clinical and the course of the disease is highly variable and multisystemic, physicians’ knowledge and experience play a crucial role not only in early recognition but also in guiding appropriate diagnostics, monitoring, and referral pathways (Karwacki et al. 2021; Karwacki 2025). This is critical because insufficient clinical awareness of NF1 may lead to delayed or missed diagnoses, inappropriate management, and prolonged uncertainty for patients, contributing to the well-documented diagnostic odyssey (Cnossen et al. 1997; García-Martínez and Hernández-Martín 2023; Dyer et al. 2024; Kowal and Domaradzki 2026). The process can also be confusing, emotionally exhausting, and financially burdensome (Ablon 1999; Kowal and Skrzypek 2024). These experiences mirror previous NF1 studies, which describe diagnostic journeys marked by long delays, miscommunication, and limited clinical knowledge (Barke et al. 2016; Rietman et al. 2018; Kowal and Skrzypek 2024; Ju et al. 2025). In these studies, participants recalled being told that their skin lesions were “just their nature,” echoing earlier accounts of normalisation (Ablon 1999; Crawford et al. 2015; Kowal and Domaradzki 2026).

These findings align with broader evidence indicating limited knowledge of rare diseases among healthcare professionals, particularly in primary care, which contributes to misinterpretation of symptoms, diagnostic delays, and erosion of trust in healthcare systems. Importantly, a growing body of research highlights persistent gaps in rare disease knowledge, resulting in low diagnostic confidence and delayed access to appropriate care (Vandeborne et al. 2019; Walkowiak and Domaradzki 2021; Ramalle-Gómara et al. 2020; Flores et al. 2022; Zhang et al. 2022; Rohani-Montez et al. 2023).

Secondly, the results indicate that clinical competence is expected to be enacted relationally, as communication, empathy, and attentive listening are understood not as optional attributes but as integral components of effective medical practice. In this sense, communication is not merely a “soft skill” but a core element of competence, shaping patients’ understanding of the disease and their sense of safety. Participants’ accounts highlight that the way information is delivered, whether clear, empathetic, and responsive or brief and impersonal, profoundly influences trust and engagement. Thus, in patients’ narratives, medical competence is not opposed to relationality but constitutes its foundation and condition. The study further shows that the “good doctor” is perceived as a professional who possesses knowledge and can enact this competence relationally through attentiveness, listening, and respect.

Previous studies confirm that poorly communicated diagnoses, even when clinically accurate, may be experienced as distressing or even “devastating,” whereas empathetic, patient- and family-centred communication fosters long-term trust and adaptation (Merker et al. 2021; Burbury et al. 2025). Importantly, attentive listening emerges as an epistemic condition of diagnosis, as recognising the patient’s perspective allows clinicians to access crucial experiential knowledge. Evidence from rare disease research indicates that deficits in communication and disease-specific knowledge can compound distress, while clear explanations and dialogue help mitigate uncertainty and support coping (Barke et al. 2016; Rietman et al. 2018; Bauskis et al. 2022; Pavisich et al. 2024).

Such an understanding of the “good doctor” is consistent with findings from studies on patient expectations across different healthcare contexts, which show that technical competence is perceived as insufficient unless accompanied by relational, communicative, and trust-building capacities (Borracci et al. 2020; Wang et al. 2023). The figure of the “good doctor” thus emerges as relational and socially constructed rather than purely professional, as confirmed by analyses of how categories of “good” and “bad” doctors are shaped through interactions and how physicians engage with patients and respond to their needs and expectations (Grundnig et al. 2022a, 2022b). At the same time, prior experiences within the healthcare system play a crucial role in shaping these expectations: individuals who have encountered poor communication, paternalism, or disorientation tend to formulate their expectations in pragmatic terms, focusing on clarity, predictability, and a sense of responsibility on the part of the physician (El-Haddad et al. 2020). In the context of rare diseases, what is at stake is therefore not an “ideal” form of medicine, but rather the minimal conditions of a good medical relationship, being listened to, taken seriously, and informed clearly and understandably (Llubes-Arrià et al. 2022; Domaradzki and Walkowiak 2024). Thus, this study confirms that, according to patients with NF1, the relationship between competence and empathy should not be understood as a dichotomy, but rather as competence enacted through a relationship.

Thirdly, patients with NF1 emphasise the importance of physicians acting as proactive guides and coordinators of care, responsible for planning, monitoring, and navigating the course of a complex and unpredictable rare disease. In this context, “good doctoring” involves not only responding to emerging symptoms but also anticipating potential complications, structuring follow-up, and providing continuity of care, which creates a sense of predictability in an otherwise ambiguous illness course. At the same time, the findings show that this guiding role is closely linked to the physician’s ability to function as a partner in navigating uncertainty. A “good doctor” is not expected to possess complete knowledge, but to communicate limitations transparently and remain relationally engaged in the process of care in a relationally secure manner, which may be valued more highly than displays of unwarranted certainty (Witt and Jankowska 2018; Merker et al. 2021; Maksymowicz et al. 2022). Previous research further suggests that recognising patients’ experiential knowledge can strengthen therapeutic collaboration, even in situations of limited diagnostic certainty (Ashtari and Taylor 2022).

Importantly, these expectations arise in a context where patients and families are often required to navigate the healthcare system themselves due to limited institutional support. Studies show that patients and families navigating rare diseases frequently coordinate their own care, consult multiple specialists, and manage inconsistent information, which contributes to frustration, uncertainty, and erosion of trust (Currie and Szabo 2019a, 2019b; Gomez-Zúñiga et al. 2021; Domaradzki and Walkowiak 2024; Phillips et al. 2024). While such self-reliance may foster forms of epistemic empowerment, it also reflects the burden of operating within a fragmented system and reinforces the need for physicians to assume a more active coordinating role (Budych et al. 2012; Witt et al. 2021; Bogaert 2021; Modelhart et al. 2024; Ju et al. 2025).

Lastly, this study demonstrates that the notion of a “good doctor” emerges as a relational and socially constructed category, shaped by patients’ prior experiences and reflecting a shift from traditional medical authority toward a model of partnership in managing uncertainty. Rather than being defined solely by professional standards, this figure is produced within concrete encounters, where patients interpret and evaluate physicians’ actions in light of their own trajectories through illness and healthcare systems (Merker et al. 2021; Grundnig et al. 2022b; Burbury et al. 2025; Ju et al. 2025). As the findings suggest, expectations toward physicians are deeply influenced by prior experiences of being ignored, dismissed, or insufficiently informed, which leads patients to value clarity, responsiveness, and accountability in subsequent interactions (Currie and Szabo 2019b; Domaradzki and Walkowiak 2024). In this sense, uncertainty constitutes not the starting point but the context within which these expectations are formed and negotiated. The “good doctor” is therefore not one who eliminates uncertainty, but one who can engage with it relationally, by remaining present, transparent, and responsive to the patient’s needs. This interpretation is consistent with research emphasising the social construction of medical roles and the importance of relational care (Blumhagen 1979; Dopelt et al. 2021; Convertini and Luciani 2023), which highlights that the quality of the patient-physician relationship depends not only on clinical expertise but also on the ability to recognise and respond to patients as partners in care.

All in all, these findings suggest that patients’ expectations toward physicians should not be interpreted as excessive or unrealistic, but rather as grounded responses to structural and relational shortcomings within healthcare systems. In patients’ narratives, the figure of the “good doctor” emerges as a professional who combines clinical expertise with the ability to enact it relationally through attentiveness and respect, thus integrating competence with relational engagement rather than opposing the two. In this sense, “good doctoring” is less about achieving ideal biomedical outcomes and more about ensuring continuity, transparency, and responsibility in care. Research on rare diseases consistently shows that patients and their caregivers primarily expect partnership, continuity, and clarity, rather than exceptional therapeutic success (Budych et al. 2012; Mcmullan et al. 2022). Accordingly, the “good doctor” can be understood as a figure of responsibility and relational presence – someone who remains engaged even in situations of diagnostic uncertainty or limited treatment options and takes responsibility for the care process as a whole (Anderson et al. 2013; Bauskis et al. 2022; Domaradzki and Walkowiak 2024). This interpretation is further supported by anthropological analyses of rare diseases, which emphasise that patients do not expect the elimination of uncertainty, but rather the willingness of physicians to engage with it and to share responsibility despite epistemic limitations (Diasio and Rajtar 2025).

Taken together, these findings suggest that “good doctoring” in the context of rare diseases should be understood not as a fixed set of competencies, but as a situated practice emerging at the intersection of knowledge, relationship, and system navigation.

Limitations

Although this study offers novel insights into how individuals with NF1 construct the notion of a “good doctor”, theses finding should be interpreted in light of several limitations. Although the sample of 93 participants is substantial for qualitative research, it does not capture the full diversity of experiences of adults living with NF1 in Poland, and the findings should therefore be understood as context-specific and analytically transferable rather than representative. Participants were recruited with the support of physicians affiliated with a single reference centre, which may have shaped the sample toward individuals with access to specialised care, potentially underrepresenting those outside regular medical follow-up. The overrepresentation of women may further limit the transferability of the findings to male patients. In addition, individuals in more advanced stages of NF1 progression were relatively few, which may have placed greater emphasis on earlier or more moderate illness experiences. All interviews were conducted remotely, which, while facilitating openness, limited the possibility of capturing non-verbal cues and interactional dynamics. Finally, the analysis was based on retrospective narrative accounts, which reflect subjective interpretations of medical encounters shaped by time and personal experience rather than objective reconstructions of clinical situations.

Despite these limitations, the study has several important strengths. It draws on a large qualitative dataset of adults with NF1, allowing for an in-depth exploration of diverse experiences across different stages of the disease. The use of in-depth interviews enabled participants to articulate complex and often ambivalent meanings attributed to medical encounters. By foregrounding patients’ perspectives, the study provides nuanced insights into relational, communicative, and organisational aspects of care, which may inform more patient-centred approaches to the management of rare genetic conditions such as NF1.

Conclusions

This study shows that the notion of a “good doctor” among patients with NF1 is constructed at the intersection of clinical expertise, relational engagement, and organisational responsibility. Patients do not expect certainty or exceptional outcomes, but rather knowledgeable, communicative, and responsible physicians who can guide them through an uncertain disease trajectory. “Good doctoring” in NF1 thus emerges as a relational practice grounded in trust, continuity, and partnership, with these findings highlighting important implications for medical education and healthcare organisation. They point to the need to strengthen rare disease education, integrate patient-centred communication as a core clinical competence, promote partnership-based models of care, and develop physicians’ ability to manage and communicate clinical uncertainty in a transparent and supportive manner.

Abbreviations

NF1

neurofibromatosis type 1

Author contributions

KK conceptualised the study, designed the interview guide, collected and interpreted the data. KK and JD conducted the literature search, discussed the results, drafted the original manuscript, and approved the submitted version. KK coordinated and supervised the study and acquired funding.

Funding

This study was supported by a national research funding agency under a research project on the experience of a chronic disease from the perspective of affected individuals and their families (grant number 2019/03/X/HS6/01173).

Data availability

Data Availability StatementDue to the sensitivity issues, the dataset generated and analysed during this study is not publicly available. However, they may be obtained from the corresponding author upon reasonable request.

Declarations

Ethical statement

This study was performed in line with the principles of the Declaration of Helsinki and was approved by the Bioethics Committee of a medical university (approval number KB 617/2017). All participants provided informed verbal consent before the commencement of the study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.