Interessante publicatie 2 juni 2022 van de resultaten van het onderzoek
'Knowing the entire story – a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease)'. Andere infectieziekten met aanhouden klachten als post-Q fatigue syndrome (QVS) en Long COVID/Post-Covid-syndroom (PCS) worden ook genoemd.
Erg herkenbaar hoe het bij de huisarts die het
eerste aanspreekpunt bij ziekte en klachten en
'de poortwachter' is voor toegang en verwijzing naar een medisch specialist en het laten doen van uitgebreid bloedonderzoek vaak al verkeerd gaat. Bij de ziekten de ziekte van Lyme; de ziekte B12 deficiëntie als gevolg van een opname-/absorptie stoornis; Bron
https://b12-institute.nl/informatie-b12/symptomen/; de ziekte vitamine D deficiëntie en een niet goed werkende schildklier ben ik niet serieus genomen en werden de erge (neurologische) klachten en de uitval (onder andere.. spierzwakte, het niet meer goed kunnen staan en lopen, verminderde en slechte zicht (ogen), ernstige neuropathie/zenuwpijn in handen en voeten, spiertrekking/spasmen in de benen/voeten/tenen, verstijving en verkramping van spieren), als een 'burnout' en 'tussen de oren' bestempeld. Dit oordeel van de huisarts heeft grote consequenties gekregen voor mijn gezondheid en het maatschappelijke en sociale leven. De eerste huisarts heeft grove medische fouten gemaakt en verschillende goede specialistische internisten hebben de brokstukken mogen oprapen.
Zijn het voor de
nieuwe voorzitter van de Lymevereniging en de leden voldoende goede punten om de samenwerking (die door de Lymevereniging
'on-hold' is gezet volgens het Werkplan Lymevereniging 2022) met de partners in het NLe; Bron
https://www.expertisecentrumlyme.nl/ voort te gaan zetten?
BMC Primary Care
Publicatie
2 juni 2022Open Access -
'Knowing the entire story – a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease)' by M.E. Baarsma, S.A. Claassen, H.E. van der Horst, J.W. Hovius & J.M. Sanders; Bron
https://bmcprimcare.biomedcentral.com/a ... 22-01736-5..Abstract
Background
Healthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms (chronic Lyme disease, CLD), potentially causing these patients to feel misunderstood or neglected by the healthcare system. This study is the first to use a combined medical and communication science approach, and aims to assess patients’ experiences with CLD & CLD-related care, identify themes and repertories in these patients’ narrations, and provide potential ways to improve communication with them..
..Background
Most healthcare professionals – and general practitioners in particular – will have encountered patients with chronic symptomsFootnote 1 associated with, or attributed to an infectious disease. A prominent example is the constellation of symptoms attributed to a Borrelia infection, also known as chronic Lyme disease (CLD).
While frequently used by patients, the media and a small subset of medical professionals, the term ‘chronic Lyme disease’ does not refer to a specific condition with established diagnostic criteria, but rather serves as an umbrella term for various chronic LD-associated symptoms. It should be distinguished from late disseminated manifestations of LD, such as acrodermatitis chronica atrophicans or late Lyme arthritis, which are universally recognized diagnostic entities caused by an active Borrelia infection [1, 2]. One definition of CLD refers to persistent symptoms after treatment of confirmed LD manifestations, commonly known as post-treatment Lyme disease syndrome (PTLDS) [2, 3]. This well-known phenomenon occurs in approx. 5-10% of patients who have had LD [2, 4], but lacks a settled explanation for its pathogenesis. Most commonly, however, CLD refers to a group of patients with an array of chronic symptoms which are in some other way attributed to LD. Such CLD classifications are frequently made in the absence of any current or former LD-specific symptoms, or are not supported by conventional laboratory tests. Although research on chronic LD-associated symptoms continues, a large majority of medical professionals and biomedical researchers do not point to a persistent Borrelia infection as the explanation for CLD patients’ complaints, and most guidelines do not acknowledge such infections as their cause [1, 2, 5]. CLD can therefore be considered a contested illness, that is, an illness that is marked by controversy with respect to its biological origin [6].
Importantly, this does not mean that these patients are not ill. A number of qualitative studies on CLD have found that patients experience a range of symptoms with a profound impact on the ability to live their lives: from losing their job, their house or their favourite hobby, to diminished social relations and barely being able to go outside [7,8,9,10]. Many suffer not only from their symptoms, but also because of the perceived invisibility of their illness and associated lack of understanding from the people around them [8, 9].
Previous research primarily utilized individual interviews and had a distinct medical perspective [7,8,9,10]. The present study expands on this approach by focusing on the experiences that are verbalized when CLD patients of various backgrounds interact: how do they then talk about their experiences with CLD and their experiences with health providers? To investigate this, we used small focus groups that applied the principles of ‘clean language’ [11]. Focus groups are particularly suited to evoke personal disclosures about sensitive themes [12, 13], as they may arise from mutual trust and recognition among participants. Clean language in qualitative research prevents that the researchers’ professional terminology is introduced in participant interactions. It ensures that the resulting verbalizations optimally reflect the participants’ own ideas of their experiences [14]. Taken together, these techniques allow us to identify themes and concepts important to CLD patients themselves, complementing insights from (bio)medically focused research and deepening our understanding of patients’ perspective on CLD-related illness.
Such a better understanding is urgently needed [15], as physicians frequently struggle how to properly care for CLD patients and those with similar contested illnesses. Notwithstanding the possibility that a specific aetiology may be found for CLD in the future, it involves complaints that are currently categorized as –for lack of a better word– medically unexplained symptoms. Such unexplained symptoms, better known as Persistent Physical Symptoms (PPS), present a challenge for patients and medical professionals alike [16,17,18,19,20]. Doctors regularly experience difficulty in effective communication providing care for patients with PPS [17, 20]. These difficulties are clearly felt by patients as well, who may experience lack of empathy and understanding in their doctor [19]. This is specifically true for CLD [7, 8], and may lead to CLD patients’ sense of neglect by the conventional healthcare system [15, 21,22,23,24,25].
Our present approach aims to start bridging this divide. Starting point is the Language and Social Action Theory [26], which brings together different research disciplines that consider that language is an integral part of a social activity, rather than only a medium of communication [27]. In this model, patients and their context (including caregivers) apply language to not only describe, but also achieve their ‘shared realities’ [28]. Analysing talk as a social practice aims to understand how descriptions are put together and what actions they achieve. The concept of repertoires specifically helps to reveal how interaction individuals work towards common ground in their particular health context [29]. Understanding how patients communicate about their illness through the lenses of Language and Social Interaction Theory will provide healthcare providers with repertoires to discuss such aspects in relevant contexts [27]. Thus, we intend to provide an overview of themes and repertoires of patient experiences [30,31,32], verbalized from their own perspective, which will help medical professionals to engage in more fruitful communications with CLD patients. To this end, we formulated the following research questions:
1. Which experiences, events and interactions are significant to CLD patients with respect to their illness? Specifically, which experiences, events and interactions with healthcare professionals are significant?
2. What themes can be identified in the narratives and interactions of CLD patients on these experiences, events and interactions, and what repertoires verbalize these themes?
Thus, we explore the challenges that CLD patients face, and reflect on ways to improve communication with not only CLD patients, but also those with other post-infectious syndromes, such as post-Q fatigue syndrome or Long COVID [33,34,35,36]..
..Participants
Participants were recruited through purposive and snowball sampling, and were approached by either telephone or email. A total of 32 persons were approached by the researchers, of whom 11 did not respond and 6 declined to participate. The remaining 15 persons were enrolled (n = 13 for primary data collection, n = 2 for subsequent saturation check). Participants were of diverse gender and age (nine women & six men in their twenties through sixties). All participants self-identified either as CLD patient, or as someone who had had persistent LD-associated symptoms in the recent past. All were presently or formerly seeking medical treatment for their illness. Participants were recruited because they were known to be active in the Dutch Lyme community (e.g., patient organization members, Lyme internet forum contributors, etcetera), or because they had been visiting Amsterdam UMC’s Lyme outpatient clinic. As we aimed to investigate the full spectrum of patient experiences with long-lasting LD-associated symptoms, self-identification was used as inclusion criterion; potential participants were not in- or excluded based on whether their medical histories contained a confirmed LD diagnosis or positive Borrelia serology. We use CLD in this context to indicate all chronic symptoms attributed to LD, irrespective of whether a relationship with a Borrelia infection would be considered likely in medical terms..
..Theme 1: symptoms and their impact
Participants spontaneously described having experienced 25 types of symptoms that they attribute to CLD, covering various domains and varying in their specifics per participant. Participants mentioned symptoms which could be grouped together as fatigue (n = 13/15, e.g., ‘so tired’, ‘completely exhausted’, ‘very little energy’); cognitive problems (n = 8/15, e.g., ‘you get confused’, ‘your attention span, it’s just gone’, ‘I forget everything completely’); myalgia & arthralgia (n = 7/15, e.g., ‘stiff joints’, ‘painful muscles’); impaired motor coordination (n = 5/15, e.g., ‘I’ll just fall over’, ‘walking was very tough’); visual and/or auditory impairments (n = 5/15, e.g., ‘foggy vision’, ‘so hazy’, ‘just couldn’t hear’); and the sensation of an abnormal body temperature (n = 5/15, e.g., ‘felt so feverish’, ‘[felt so] cold’, ‘flu-like complaints’).
Participants indicated the unpredictable nature of their illness, experiencing alternating periods of feeling better and feeling worse. They also described their experience that CLD manifests itself in very different and unique ways from person to person, for example with respect to symptoms, modes of treatment that work or do not work, or the course of the illness. Many participants mentioned the invisibility of their symptoms, either as inherent (i.e. that they cannot be readily seen on the outside), or resulting from efforts to make them invisible (i.e. to prevent subjecting themselves to perceived ridicule or unhelpful attitudes)..
..Theme 2: situations, events and interactions - healthcare providers
Participants would highlight their initial visit to a regular medical professional with respect to CLD as significant. Because of the organization of the Dutch healthcare system, patients’ quest for relief from their illness commonly starts at their general practitioner (GP), who may either diagnose and treat a patient, or may refer to specialist care in hospital. Various participants had negative experiences with their GP, with some saying they completely avoided their GP or stuck to a purely business-like relationship. However, feelings of disappointment and frustration were far from unique to general practice. Virtually all participants had some negative experience with medical practitioners.
P9: If the GP had asked something, then I would have remembered. If he had asked: “Have you been in the woods, have you had a tick bite?”, then I would have [said]: “Yeah, I did have a tick bite.” And then maybe, well, then you hope that it had been treated at that time. But that didn’t happen and he didn’t ask.
P2: You go to a doctor with the anticipation that they are going to make an effort for you, but along the way you notice that they have their own interests and ideas, and if you don’t fit into their frame of reference then you can go. Yeah, the doctor is only insulting.
Participants discussed what they missed or had wanted to see in the care from their GP or other treating physician. Though some acknowledged that GPs cannot possibly know all there is to know about every disease, many participants did note a lack of knowledge on the part of their doctor about the intricacies of Lyme disease. At the same time, they wished for a doctor who took a more holistic approach and looked beyond their own expertise. Some participants expressed regret that their doctor did not believe that certain symptoms were caused by LD, while –conversely– others expressed regret that their doctor attributed all their symptoms to LD out of a perceived ‘convenience’ to do so, rather than look further what potential other causes may underlie them.
P1: They only look at that one thing, […] but all that time no-one looked at the entire picture.
P18: What I think is a pity, is… you go through a lot in a short while, all sort of things happen, and, uhm, there’s a doctor in front of you who doesn’t want to hear it. Look, when you try to describe a symptom, you experience that for the first time, you also don’t know what the medical term is. You try to describe something, but you just notice that the other side of the table is completely disinterested.
Several participants said they had been referred to psychologists, either when their doctors could not find an organic cause to their symptoms, or concurrent with further somatic work-up. Some viewed this in a positive way, others negatively, specifically when they suspected the referral stemmed from an apparent inability to diagnose their case.
P1: Well, they can’t find anything so it must be ‘between the ears’.
Participants also mentioned seeking healthcare options outside the context of regular medical practice. They indicated that they sought out these complementary or alternative medical (CAM) practices in part because it gave them some control over their situation after being disappointed by regular medical professionals.
P11: [My strict diet] gives a feeling that you have a bit of a grip. If that’s true or not, doesn’t interest me in the slightest. It just like…
P8: That at least you’re doing something about it.
P11: Exactly, and that feels good.
P8: It gives you power.
P11: It gives you a bit of control too..
..Theme 3: situations, events and interactions - peers
..Participants also relayed their interactions with other CLD patients. These sometimes took place in person, but more often were conducted online. Some also took place within the context of the patient organization. Participants indicated that they would also read or hear about other CLD patients’ experiences. Participants appreciated the mutual support and recognition between CLD patients, while some also reported being emotionally affected or even frightened by the seriousness of others CLD patients’ condition.
P11: I saw something on TV once, some clips of someone who was in bed, completely passed out, and this and that, and I thought: ‘This isn’t me, this is not what I want to be’, so I shut it off.
P16: The [patient organization], I telephoned them. And that shocked me terribly. I called them, and I think I spoke to a very young person, and I talked about some mild complaints, not at all extremely serious, and in her second sentence she advised me to start taking antibiotics just on my own. So yeah, that shocked me a lot..
..Other presuppositions
Essentially, impersonal “you” presupposes so-called common ground, but it is not the only language tool for participants to do so [41]. In general, presupposition implicitly assumes that one aspect of what is said is generally true or valid. Apart from impersonal “you”, we also observed definite description as presupposing signal [42], for instance when participants talk about ‘that feeling of…..’ or ‘that idea of…’. This implies that the speaker’s feeling or idea is not unique to them, but rather generally true and shared by others. In other words, it’s not just a feeling that ‘I’ have, it’s that common feeling that others have as well. Another example entails presenting personal experiences as generally accepted facts or certainties, which are taken for granted by the speaker and, by presupposition, also by others in the communication [41, 42].
P8: When I noticed again that I was getting ill, it did make me emotional. […]
P2: Yeah, that feeling of ‘here we go again’.
P10: And of course, the bite mark disappears.
P1: Yeah.
P10: It disappears and you never see it again.
P3: Short-term memory is really, uhm, very annoying. So, you come up with tricks for that.
Here, P10 describes her own experience with a fading tick bite mark but phrases it as to imply that this happens to everyone, and follows up this statement with an impersonal second singular. P3 similarly describes her own memory difficulties but phrases it suggesting that her problem is a problem shared by CLD patients in general..
..Affirmative elaboration
A final observed means of creating common ground was frequent affirmation of what previous speakers have said. In a focus group, participants are neutrally invited to react on what others in the group say. A striking finding in our data is that participants –even those with divergent illness severities and durations– almost invariably actively confirmed the experiences which other participants narrated. We counted the speaking turns from the first four (exploratory) focus groups in which a participant agreed with another participant as a proportion of the total number of speaking turns by participants. While we must be careful in drawing conclusions without robust data on the ‘natural’ occurrence of agreement versus disagreement in group conversations, we think it is important to point out that as much as 256 speaking turns were found containing explicit agreement with another speaker and 369 speaking turns containing implicit agreement (e.g., expanding, nuancing or clarifying the point of another speaker). This translates to 12.7% (256/2016) and 18.3% (369/2016) of total speaking turns, respectively.
However, if we only look at the 733 speaking turns that entail an actual interaction between participants and/or the moderator, we find that over 85% of those interactions are explicitly or implicitly affirmative (explicit: 256/733, 34.9%; implicit: 369/733, 50.3%). Conversely, only 3.8% (28/733) of interactions entailed an explicit disagreement with another speaker, while the remaining (80/733, 10.9%) were other types of interactions such as questions or discourse markers. These frequencies were consistent between the four exploratory focus groups. This may be explained by the tendency of participants in a conversation to take their turn at a point where they can agree and, as they generally have a preference for agreements and acceptance and to avoid disagreeing with another [43]. This type of conversational pattern is known as the collaborative achievement of agreement, aimed at keeping each other’s ‘face’ in a positive way [44].
Interestingly, though several participants believed that CLD is a very heterogeneous illness (implying that experiences are not shared), they actively created and found common ground within the heterogeneity of their experiences.
P10: You’ve had it for so long [..] that you know very well..
P3: Yes
P10: ..what’s the matter with you.
Mod: Okay, that..
P10: Like, I know this, this is Lyme.
P3: Yes.
P4: Yeah, exactly.
In the excerpt below, all three phenomena of common ground construction come together. In this particular fragment, participants discuss a journalistic article about suicide among CLD patients (emphasis added in bold):
P14: Long before you get into the suicidal state, there should already be help, at least psychological help.
P12: And recognition..
P14: Because I think it really comes out of desperation.
P12: Yeah, not being heard.
P14: Yes, and feeling all alone and no perspective..
..Conclusions
In summary, we find that CLD patients experience significant symptoms, for which they only rarely find adequate relief from regular medical practitioners. They explicitly and implicitly seek validation of their symptoms by healthcare providers, peers and other CLD patients. We put forward the hypothesis that CLD patients may benefit from a specific approach, including appropriate (diagnostic) interventions early in the course of the illness, as these may yield long-term benefits. Finally, it is important that medical professionals are aware of their own attitudes and behaviours towards CLD and the potential effect on the patient, so that any unhelpful approaches to this medical problem – irrespective of its precise aetiology – are avoided. This advice is quite universal to all of medicine, and will not be news to most practitioners. Yet, our findings do underscore the urgency for this approach specifically with respect to an illness as complicated as CLD. While our findings relate to CLD, we identified many similar themes in research on other diseases or contested illness. Our research therefore also provides potentially important lessons for healthcare providers who see patients with such illness, including –most prominently at this time– patients suffering from persistent complains after COVID-19..
