Prerequisites, barriers and opportunities in care for Q-fever patients: a Delphi study among healthcare workers

Q-fever is a zoonotic disease that is prevalent worldwide and that can lead to illness, hospitalization, disability and death [1, 2]. Q-fever is transmitted to humans by inhaling aerosols containing the Coxiella burnettii bacteria from birth by-products of domestic animals [1, 3]. Approximately 40% of Q-fever patients experience symptoms. Half of them have mild flu-like symptoms, whereas the other half experience more severe symptoms, such as high fever, pneumonia and hepatitis [4‐6].

Between 2007 and 2010, the largest Q-fever outbreak ever reported worldwide occurred in the Netherlands; estimations indicate that over 50,000 individuals were infected with Q-fever [7‐9]. After the first outbreak in 2007, the annual number of notified cases rapidly rose and increased tenfold between 2007 and 2009 [7]. Public health authorities were not prepared for a large Q-fever outbreak. Only limited knowledge and evidence on the impact, control measures, identification, treatment and care was available at the time of the outbreak [7, 10, 11].

Q-fever can lead to long-term health consequences, namely Q-fever fatigue syndrome (QFS) and chronic Q-fever [2, 4]. Recent studies estimate that QFS occurs in approximately 20% of Q-fever patients [2]. The clinical manifestation of QFS consists of fatigue persisting for at least 6 months which can be accompanied by a wide range of other symptoms, such as headache, muscle and joint pain and mental health problems [2, 12]. In addition, an estimated 1–2% of infected patients develop chronic Q-fever, which can occur months or years after the initial infection [1, 13]. Common clinical manifestations of chronic Q-fever are endocarditis and infection of aneurysms or vascular prostheses, although the presentation varies [13]. Untreated chronic Q-fever has a high mortality rate of 60% [14].

Both chronic Q-fever and QFS have a substantial impact on the lives of patients. Reukers et al. found that even 5–9 years after acute infection, the quality of life and social functioning of patients with chronic Q-fever and QFS is significantly lower than in the general population and also significantly lower compared to patients with another chronic illness [15]. Bronner et al. support these results and found that the vast majority of patients experienced health problems 10 years after infection. Furthermore, approximately 40% stopped working permanently and over 25% experienced problems with social participation due to their illness [16].

Bronner et al. also found that patients with QFS and chronic Q-fever consulted a median number of 6 different healthcare providers [16]. In comparison, earlier research found that patients with chronic disease in the Netherlands consult a mean of 4.5 different healthcare providers [17]. The majority of patients (75%) was unsatisfied with the overall quality of care for Q-fever. According to patients, the most important barriers were the lack of knowledge of healthcare workers (HCWs), not feeling heard or understood and the lack of availability of services [16].

Currently there is no high quality evidence nor consensus regarding the optimal treatment for QFS [2, 18]. After the large Dutch epidemic, out-patient follow-up care was given to Q-fever patients experiencing prolonged symptoms. However, there was no standardization of the post-infection care provided [10].

To improve the quality of care, insight into barriers and facilitators for the care for Q-fever patients from the perspective of HCWs is necessary. HCWs have the most practical understanding of problems surrounding Q-fever care and are ultimately the ones directly involved in efforts to improve the quality of care. These insights are not only required for improving Q-fever care, but are also relevant for the care for patients who experience long-term sequelae of other infectious diseases. The recent COVID-19 pandemic highlights the global threat infectious diseases pose to public health [19]. As with Q-fever, a significant proportion of COVID-patients experience persisting symptoms months to years after initial infection, usually labelled long COVID or post-COVID-19 condition [20]. The care for long COVID appears to present similar challenges as Q-fever since the clinical manifestation varies considerably and consists of a wide range of symptoms [21, 22]. Thus, insights into the barriers and facilitators of care for Q-fever can also be valuable to improve care for patients with persisting post-infections symptoms as a result of other infectious diseases, such as COVID-19.

The aims of this study were to identify (1) prerequisites for high quality care for Q-fever patients according to HCWs; (2) barriers and facilitators that HCWs experience in the care for Q-fever patients; (3) how these barriers can be overcome; and (4) how care for Q-fever patients should be organized according to HCWs.

In this section, we first describe the panel characteristics. Second, the current state of Q-fever care is discussed. Third, the prerequisites, barriers and facilitators for high quality care are presented, and one of the main barriers is discussed in more detail. Lastly, we describe how HCWs believe care for Q-fever patients should be organized.

The results of this study showed that, according to HCWs, the care for Q-fever patients leaves much room for improvement. HCWs indicated many prerequisites for high quality care, of which financial compensation of care and sufficient knowledge of Q-fever among HCWs were most frequently mentioned. However, the panel identified lack of knowledge as the number one barrier in current practice: they indicated that creating more awareness of the long-term effects of Q-fever could lead to more timely and accurate patient referrals. Improving the knowledge level to overcome this barrier is considered to be relatively easy according to HCWs, for example through continuing medical education.

The fact that HCWs considered the lack of knowledge among HCWs to be the most important barrier is in line with the most frequently mentioned barriers by patients [16]. We saw a distinct difference between how HCWs rated their own knowledge and how they rated the knowledge of HCWs in general, which might be explained by the fact that most of the HCWs in our study are experts in the field of Q-fever. These results indicate that knowledge improvement could be an important building block for improving care for Q-fever patients. That most HCWs consider the lack of knowledge relatively easy to tackle seems promising, although this might be due to their belief that others should improve their knowledge.

A lack of knowledge among HCWs has also been identified as a key issue impeding high quality care for patients with other post-infectious syndromes and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a similar condition to QFS [30‐32]. Previous research on implementing resources to support the diagnosis and management of ME/CFS showed the difficulty of improving knowledge among general practitioners due to the complexity of such conditions and the low prevalence [33]. HCWs in our study also emphasize these issues, which indicate the importance of tailoring the format and extent of continuing medical education to the needs of HCWs and what they encounter in daily practice. A short and general program, for instance through online modules, aimed at improving knowledge of multiple post-infectious syndromes, including QFS and post-COVID-19 condition, could be offered to a broad audience of HCWs. Awareness and recognition of post-infectious syndromes should be the priority for most HCWs. However, those working with patients in high-risk areas (i.e. high infection rates during Q-fever epidemic) would likely benefit from more extensive education on follow-up steps and treatment of Q-fever patients in a different, more interactive format.

Closely related to the lack of knowledge of Q-fever is the limited and unclear scientific evidence for effective treatments, which the majority of HCWs considered to be another significant barrier. More scientific research and up-to-date information for HCWs were frequently mentioned prerequisites for high quality care. However, over half of HCWs believed that the problem of limited scientific research is not easily tackled. Recent studies also emphasize that there is insufficient evidence on treatment options for Q-fever patients as well as on prognosis and risk factors for a severe disease course [2, 34, 35]. Although the dissemination of existing scientific knowledge will undoubtedly contribute to the quality of Q-fever care, more research on treatment options is also essential for better disease management.

The need for multidisciplinary care also appears to be an important aspect of Q-fever care as HCWs indicate that many healthcare providers from different disciplines should be involved in the care for QFS and chronic Q-fever. The recently updated QFS guideline also emphasizes this: although there is no scientific literature available on the effectiveness of multidisciplinary treatment of QFS patients, the working group who developed the guideline advises healthcare providers to consider the option of referral to a specialized center for multidisciplinary treatment [12]. However, HCWs reported that they currently collaborate with a median of four healthcare providers, so although HCWs acknowledge that the care preferably involves many disciplines, based on the reported collaborations, this ideal seems to be difficult to realize.

One aspect that possibly impedes effective multidisciplinary collaboration is a lack of clear roles and responsibilities of the different healthcare providers [36]. Although the majority of HCWs indicated that a general practitioner should have the ultimate responsibility for QFS care and a medical specialist for chronic Q-fever, quite a large group believed otherwise (47% and 28%, respectively), suggesting some disagreement about the preferred role division between different professions. Nevertheless, in order to enable effective multidisciplinary collaboration, it is essential that HCWs agree and act on their respective roles and responsibilities as a lack of understanding of the roles and responsibilities of others could negatively impact collaboration and lead to a lower quality of care [36‐38]. Unfortunately, current guidelines and care pathways provide insufficient guidance on the roles and responsibilities of the different professions involved in the care for these patients, nor on how to accomplish effective multidisciplinary collaboration [12, 39].

In addition to sufficient knowledge among HCWs, up-to-date information for HCWs and a multidisciplinary approach to treatment, HCWs indicated many other prerequisites for high quality care. The large number of prerequisites shown in this study indicates the complexity of Q-fever care and shows that it is unlikely that there is one ready-made solution to improve the quality of care. Furthermore, these prerequisites have implications for several aspects of healthcare. While sufficient knowledge directly concerns HCWs, the condition of financial compensation of care applies to policymakers in healthcare. The high ranking of financial compensation indicates that the problems surrounding Q-fever care – as well as the solutions – do not only lie with HCWs, but that healthcare policy plays a key role.

When comparing ratings of Q-fever care of HCWs to those of Dutch patients, we see a clear discrepancy between how HCWs and patients perceive the quality of care. HCWs in our study rate the care for Q-fever at a median score of 6/10, while in earlier research, Q-fever patients gave a median score of 4/10 [16]. Although the question was formulated similarly for HCWs and patients, these ratings might not be directly comparable, as the interpretation of ‘quality of care’ possibly differs between HCWs and patients. As suggested by Bronner et al., HCWs and patients may have different perceptions of relevant aspects of health [16]. Previous research has shown that HCWs’ and patients’ expectations of care as well as their methods of assessing care differ [40, 41]. Huber et al. found that patients consider many dimensions of health to be important, including mental functions and perception, social participation and daily functioning, while healthcare providers, especially doctors, look at health from a more biomedical viewpoint [42]. These diverging views on health might translate to different perceptions of the quality of Q-fever care. The comparison of satisfaction with care between HCWs and patients should thus be interpreted with caution. However, the difference implies that patients are less satisfied with Q-fever care than HCWs, although both groups indicate that there is much room for improvement and a need to identify barriers in Q-fever care.

HCWs in our study are less satisfied with the care they can provide for QFS than for chronic Q-fever. This contrast is also reflected in patients’ assessments: Bronner et al. reported that patients with QFS rate their care significantly lower than those with chronic Q-fever, at a 3/10 and 6/10, respectively [16]. We hypothesize that the strong dissatisfaction of both HCWs and patients with QFS care compared to chronic Q-fever care may be related to the concept of cure versus care. Cure is aimed at healing and recovery, while care is aimed at limiting the negative effects of a condition on multiple aspects of patients’ lives as much as possible [43‐45]. HCWs in this study mentioned that barriers differ as treatment for chronic Q-fever is crucial in preventing mortality, while treatment for QFS is targeted at morbidity. Furthermore, while there are effective treatment options for chronic Q-fever, there is a lack of evidence-based treatment for QFS [39, 46]. Thus, the treatment of chronic Q-fever is mainly focused on cure, whereas the treatment of QFS has a much stronger emphasis on care. Previous research has shown that HCWs experience difficulties when treatment for a condition is care-focused. Qualitative research on dementia care found that physicians struggled with the care for patients when standard pharmacological interventions were no longer effective [44], and research on care for patients with medically unexplained symptoms showed that general practitioners experience frustrations when caring for these patients due to their inability to ‘fix’ the problem [47, 48]. Researchers suggested that communication skill courses as well as increased emphasis on psychosocial aspects during medical training may lead to a more care-oriented attitude [47, 49].

The results from our study and a previous study among Q-fever patients [16] indicates that the same difficulties with cure versus care may apply to QFS care: HCWs and patients acknowledge the poor quality of care, yet improving the quality of care remains challenging. Although the current QFS guideline states the importance of providing patients with support in handling their problems and limitations, it contains little direction on how this should be accomplished [12]. The scarcity of information on care-focused aspects in guidelines has also been identified in previous research [44]. Providing HCWs with more guidance on care-focused aspects of treatment via existing or new clinical practice guidelines may contribute to the challenge of improving the quality of care as well as the satisfaction of both HCWs and patients with the provided care.

Some HCWs mentioned that creating care networks similar to existing networks such as ParkinsonNet could increase the quality of care through improving two important aspects: multidisciplinary collaboration and knowledge. Parkinson, like QFS and chronic Q-fever, is a complex chronic disease that requires the involvement of many different professionals. In the ParkinsonNet model care is concentrated among trained professionals organized in regional networks. Collaboration between professionals is facilitated by a dedicated online platform, which also provides patients with information on access to care and quality of care [50, 51]. Bloem et al. suggest that this model could also improve care for other chronic disorders [51]. Consequently, the ParkinsonNet model could possibly provide tools for further development of clinical practice guidelines and care networks of healthcare providers for care for Q-fever patients.

In light of the current COVID-19 pandemic, it is essential to draw lessons from the challenges of Q-fever care. The immense reach of COVID-19 makes it crucial to provide high quality care to patients, especially to those with long COVID [21]. Following the Dutch Q-fever epidemic, there was no standardization of post-infection care, scarce information on identification and treatment, and the scale of the impact of long-term consequences only became clear in recent years, a decade after the start of the epidemic [2, 10]. Fortunately, there is a great deal of attention for possible long-term sequelae of COVID-19, and the clinical case definition of post-COVID-19 condition by the World Health Organization hopefully facilitates both healthcare research and practice [52]. Nevertheless, our results indicated several aspects that appear to be relevant for providing high quality care that require attention when organizing care for COVID-19, namely: ensuring that HCWs have sufficient knowledge, especially with rapidly emerging new evidence; considering how to structure complex care involving many different disciplines; and concentrating on both cure- and care-focused treatment aspects.

Ten years after the Q-fever epidemic HCWs indicate that the care for Q-fever patients still leaves much room for improvement. This exploratory study provides directions for possible avenues to advance the quality of care, namely: improving the knowledge level of HCWs; ensuring that HCWs are aware of and agree on their respective roles and responsibilities to enable effective multidisciplinary collaboration; and providing HCWs with guidance on how to support patients in handling their problems and limitations. More scientific evidence on treatments, prognosis and risk factors; further development and specification of clinical practice guidelines and the implementation of care networks based on existing models for other similarly complex and variable diseases may help achieve these goals and improve the care for patients with persisting post-infectious symptoms as a result of other diseases, such as COVID-19, and are thus valuable in the organization of care for COVID-19 patients.