Prerequisites, barriers and opportunities in care for Q-fever patients: a Delphi study among healthcare workers 2023 Brus et al

[Andy]

Background
Q-fever is a zoonotic disease that can lead to illness, disability and death. This study aimed to provide insight into the perspectives of healthcare workers (HCWs) on prerequisites, barriers and opportunities in care for Q-fever patients.

Methods
A two-round online Delphi study was conducted among 94 Dutch HCWs involved in care for Q-fever patients. The questionnaires contained questions on prerequisites for high quality, barriers and facilitators in care, knowledge of Q-fever, and optimization of care. For multiple choice, ranking and Likert scale questions, frequencies were reported, while for rating and numerical questions, the median and interquartile range (IQR) were reported.

Results
The panel rated the care for Q-fever patients at a median score of 6/10 (IQR = 2). Sufficient knowledge of Q-fever among HCWs (36%), financial compensation of care (30%) and recognition of the disease by HCWs (26%) were considered the most important prerequisites for high quality care. A lack of knowledge was identified as the most important barrier (76%) and continuing medical education as the primary method for improving HCWs’ knowledge (76%). HCWs rated their own knowledge at a median score of 8/10 (IQR = 1) and the general knowledge of other HCWs at a 5/10 (IQR = 2). According to HCWs, a median of eight healthcare providers (IQR = 4) should be involved in the care for Q-fever fatigue syndrome (QFS) and a median of seven (IQR = 5) in chronic Q-fever care.

Conclusions
Ten years after the Dutch Q-fever epidemic, HCWs indicate that the long-term care for Q-fever patients leaves much room for improvement. Facilitation of reported prerequisites for high quality care, improved knowledge among HCWs, clearly defined roles and responsibilities, and guidance on how to support patients could possibly improve quality of care. These prerequisites may also improve care for patients with persisting symptoms due to other infectious diseases, such as COVID-19.

Open access, https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-023-09269-y

 

[Hutan]

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].

I thought this was interesting, in relation to the possibility of a latent pathogen. It could be that some people are reacting to such a latent pathogen (QFS). Whereas others don't react, but the pathogen can reactivate months or years later and cause problems (chronic Q-fever).

 

[Hutan]

The Delphi study took place following a large scale survey among Q-fever patients [16]. The results from this previous study, as well as other available literature, were used as a starting point for the topics of the questionnaires. [that were provided to the health care workers in this study]

Ref #16:
Bronner MB, Haagsma JA, Dontje ML, Barmentloo L, Kouwenberg R, OldeLoohuis AGM, et al. Long-term impact of a Q-fever outbreak: An evaluation of health symptoms, health-related quality of life, participation and health care satisfaction after ten years. J Psychosom Res. 2020;139:110258.

I thought this excerpt had a few interesting aspects:

HCWs considered Q-support, the national center of expertise for Q-fever, and contact with other Q-fever patients the best organized aspects of Q-fever care (62%), followed by the care delivered by centers of expertise and specialists (44%) and the Dutch QFS guideline (25%) (Additional file 1: Supplementary Table S2). The majority of HCWs (76%) who treated QFS patients were familiar with the QFS guideline that was published by the National Institute for Public Health and the Environment. However, 20% of them had not yet applied the guideline in practice. The usefulness of the guideline was rated at a median score of 8/10 (IQR = 2). Although most HCWs were positive about the guideline, several mentioned that the recommendations are targeted at supporting patients, not at curing the disease. As a result, they believed current treatment recommendations for QFS to be insufficient.

There is a national centre of expertise for Q-fever and a QFS guideline.

Within the Dutch healthcare system, care for a specific condition is usually paid through a diagnosis-treatment combination (DBC), meaning that health insurers pay one standard price for the entire care path, not separately for each treatment [29]. Multiple HCWs mentioned that there is not a specific DBC-code for Q-fever fatigue syndrome, leading to insufficient reimbursement of care for Q-fever patients through basic insurance.

Continuing medical education (e.g. accredited e-learning, discussion of case studies) was considered the most important method for improving knowledge level (74%), followed by the development of guidelines and protocols (57%) and a good consultation structure and visibility of centers of expertise (44%)

The people surveyed thought 8 health care workers were needed for good QFS care (which makes me suspicious about what care they think is useful):

According to HCWs, care for Q-fever patients should be provided in a multidisciplinary setting. The median number of healthcare providers needed for optimal Q-fever care was 8 (IQR = 4) for QFS and 7 (IQR = 5) for chronic Q-fever. Most HCWs considered a general practitioner (88%), occupational physician (74%), psychologist (70%), physiotherapist (68%), Radboud UMC Q-fever Center of Expertise (61%) and Q-support (59%) needed in the care for QFS patients.

More awareness, more education is of course good, but the devil is in the detail - what exactly are the H?CW's to be taught? Mention of ME/CFS here as being similar to QFS, and that education about the various post-infectious syndromes could be achieved in one programme.

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 [30,31,32]. 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.

 

[Hutan]

A finding of more research needed:

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.

HCWs seem to be in favour of multidisciplinary care, as is the recent QFS guideline, although it is noted that there is no evidence to support that approach.

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].

There's discussion of patient dissatisfaction with QFS care and acknowledgement that there is no evidence-based care. Along with HCW's expressing concern about how they get paid, the issue of there not being a cure, and this making patient care difficult is noted:

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].

Sorry about the many quotes. I thought this was an interesting paper. I think advocates, and especially Dutch advocates, might find it useful to read it. The paper talks about more than QFS, looking at models of care that might serve a range of post-infection syndromes including Long Covid.