Katrin Hulme1, Paul Little2, Abigail Burrows1, Anna Julia1, Rona Moss-Morris1. 1. Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. 2. Primary Care and Population Sciences, Faculty of Medicine, University of Southampton, UK.
Abstract
OBJECTIVES: Fatigue is a common symptom in primary care. Chronic fatigue research highlights the value of preventing chronicity, but little research has investigated the early, subacute stage of the fatigue trajectory (<3 months). We aimed to examine patient and general practitioner (GP) perspectives of subacute fatigue in primary care: (1) to gain a better understanding of fatigue during this stage and (2) to explore how management could be improved. DESIGN: A qualitative study design was used. In-depth, semi-structured telephone interviews were conducted with 14 patients and 14 GPs (non-dyadic), recruited from 19 primary care practices. METHODS: Interview transcripts were thematically analysed. Initially, patient and GP accounts were analysed separately, before themes were merged to identify shared and independent perspectives. RESULTS: Three main themes were identified. Within these, subthemes from patients', GPs', or shared patient/GP perspectives emerged. The main themes encompassed the following: (1) Change from normal - the impact of fatigue; (2) The challenges of managing fatigue; and (3) The consultation GPs' knowledge was often not reflected in patients' accounts, even for those reporting positive experiences, suggesting knowledge was not effectively translated. CONCLUSIONS: Some findings, such as impact, mirror those described in chronic fatigue. New insights into early-stage fatigue management also arose, including mismatches in patient and GP perceptions on negative tests and not re-presenting. These highlight the need for better communication and shared understanding. GPs should pre-emptively present a biopsychosocial model of fatigue and keep communication channels open, particularly in the light of negative physiological tests. Statement of contribution What is already known on this subject? Patients with chronic fatigue retrospectively report lack of understanding from GPs in early stage of illness. Little research has investigated the early stages of the fatigue trajectory. What does this study add? Consequences of an episode of subacute fatigue are similar to those reported for CFS. There is discordance between GPs' positive view of negative tests and patients' need for explanation of symptoms. The length of appointments is a significant barrier for creating shared understanding.
OBJECTIVES:Fatigue is a common symptom in primary care. Chronic fatigue research highlights the value of preventing chronicity, but little research has investigated the early, subacute stage of the fatigue trajectory (<3 months). We aimed to examine patient and general practitioner (GP) perspectives of subacute fatigue in primary care: (1) to gain a better understanding of fatigue during this stage and (2) to explore how management could be improved. DESIGN: A qualitative study design was used. In-depth, semi-structured telephone interviews were conducted with 14 patients and 14 GPs (non-dyadic), recruited from 19 primary care practices. METHODS: Interview transcripts were thematically analysed. Initially, patient and GP accounts were analysed separately, before themes were merged to identify shared and independent perspectives. RESULTS: Three main themes were identified. Within these, subthemes from patients', GPs', or shared patient/GP perspectives emerged. The main themes encompassed the following: (1) Change from normal - the impact of fatigue; (2) The challenges of managing fatigue; and (3) The consultation GPs' knowledge was often not reflected in patients' accounts, even for those reporting positive experiences, suggesting knowledge was not effectively translated. CONCLUSIONS: Some findings, such as impact, mirror those described in chronic fatigue. New insights into early-stage fatigue management also arose, including mismatches in patient and GP perceptions on negative tests and not re-presenting. These highlight the need for better communication and shared understanding. GPs should pre-emptively present a biopsychosocial model of fatigue and keep communication channels open, particularly in the light of negative physiological tests. Statement of contribution What is already known on this subject? Patients with chronic fatigue retrospectively report lack of understanding from GPs in early stage of illness. Little research has investigated the early stages of the fatigue trajectory. What does this study add? Consequences of an episode of subacute fatigue are similar to those reported for CFS. There is discordance between GPs' positive view of negative tests and patients' need for explanation of symptoms. The length of appointments is a significant barrier for creating shared understanding.
Fatigue is a common symptom in primary care with 5–7% of people presenting with a primary complaint of fatigue (Hamilton, Watson, & Round, 2010). Acute fatigue can be associated with a wide range of triggers, including viral illness, disrupted sleep/wake cycle, and emotional stress. Fatigue is defined as subacute when ≤3 months in duration, and chronic after persisting for 4 months in the United Kingdom (NICE, 2015) or after 6 months in the United States (CDC, 2015). Only around half of people with tiredness/fatigue as a major or concurrent symptom recover within 1 year. This means around half still have chronic fatigue a year later (Nijrolder, van der Horst, & van der Windt, 2008; Nijrolder, van der Windt, & van der Horst, 2008). A small percentage will have been diagnosed with chronic fatigue syndrome (ME/CFS), which has more stringent diagnostic criteria including fatigue that is disabling in nature, has a sudden onset, and is not alleviated by rest (CDC, 2015; NICE, 2007). A review of studies from around the world suggests the average prevalence of chronic fatigue is 10% and that of chronic fatigue syndrome is 1% of the population (Son, 2012). The pervasive and fluctuating nature of chronic fatigue and the associated physical and emotional symptoms and reduction in capacity have been documented (Storkmorken, Jason, & Kirkevold, 2015), as have the difficulties of it being an unknown illness and ‘losing’ elements of life (Jelbert, Stedmon, & Stephens, 2010). This highlights the value of preventing acute fatigue becoming chronic.Current guidance in the United Kingdom for managing tiredness/fatigue suggests targeting modifiable psychological, social, and general health factors, but includes little specific information about how to best do this (NICE, 2015). One way to guide early treatment is to understand risk factors associated with moving from acute to chronic fatigue. A recent systematic review of risk factors following an acute infection (Hulme, Hudson, Rojczyk, Little, & Moss‐Morris, 2017) supported existing biopsychosocial models of chronic fatigue which suggest a complex interaction of predisposing, precipitating, and perpetuating factors in the aetiology of chronic fatigue (Deary, Chalder, & Sharpe, 2007; Surawy, Hackmann, Hawton, & Sharpe, 1995). The data suggest that pre‐existing health issues, lack of fitness, and distress/stress may predispose individuals to be vulnerable to post‐infectious fatigue. Vulnerable individuals may have a heightened immune response to infection, resulting in more severe acute symptoms. In turn, this may result in increased bed rest, sick certification, and time off work. Prolonged inactivity may result in a rebound response to rush back to previous levels of activity, only to find this ‘boom’ behaviour produces further symptoms. If these symptoms are attributed to a psychological or physical illness, rather than normalizing these in relation to pushing too hard after a time of bed rest or severe symptoms, patients may develop a negative representation of their symptoms and illness. The response may be to rest again rather than risk activity. This in turn produces more symptoms and an ongoing vicious cycle (Hulme et al., 2017).Another factor not measured in medical studies included in this review is the role of the therapeutic doctor–patient alliance in alleviating or contributing to ongoing fatigue (Deale & Wessely, 2001). The biopsychosocial model described above could help provide patients with a clearer understanding of their fatigue and help structure behavioural strategies to assist recovery, such as a careful, graded return to activity. However, there is very little work exploring doctor–patient relationships in the earlier stages of fatigue and whether these models are indeed used in practice.Qualitative studies of patients with established CFS frequently described negative patient experiences, relating to not feeling believed and having no clear ‘next step’ (Hannon et al., 2012; Hareide, Finset, & Wyller, 2011). Conversely, doctors seem to view CFS as a difficult condition to deal with, in part due to discordance with patients’ views regarding cause and management (Raine, Carter, Sensky, & Black, 2004) and the discrepancy between the ‘ideal’ doctor role of providing a cure versus the ‘reality’ of the consultation (Asbring & Narvanen, 2003). However, eliciting accurate information about early fatigue experiences is limited by the retrospective data collection.This qualitative study aimed to examine patient and general practitioner (GP) perspectives of fatigue in primary care, to gain a better understanding of fatigue during the subacute stage from both perspectives and provide insights into how subacute fatigue management in primary care specifically could be improved.
Methods
Design
Qualitative methods using semi‐structured telephone interviews were conducted with all participants.
Participants
This study was nested in the FAME (Fatigue: acute fatigue Assessment and Management in Everyday practice) NIHR development programme, an ongoing feasibility cohort study investigating risk factors of CFS/ME, based in the south of the United Kingdom. Patients are recruited either by their GP during consultation or by general practice mail‐out. Three basic clinical presentations are included: (1) glandular fever, (2) other infective precipitants, and (3) no clear infective precipitant. Patients were screened for inclusion: score 4+ on the Chalder Fatigue Scale (Chalder et al., 1993) for <3 months. Exclusion criteria were as follows: unable to give informed consent, or presenting with a clear non‐infective and short‐term cause for fatigue (e.g., pregnancy, clinical hypothyroidism, drug induced).At enrolment for FAME, patients consented to be contacted regarding this study. GPs were recruited by email via general practice research managers; if willing to participate, they were asked to contact the researcher. All participants were recruited from 19 GP practices. All were publicly funded National Health Service, primary care GP practices with practice population sizes ranging between 6,132 and 24,616 (mean = 9,939).Patients and GPs were not directly matched, and although there may have been overlap between patients and GPs, this was not explicitly ascertained so we cannot assume any dyadic relationships were included. Patient recruitment commenced in September 2015 and finished in March 2016, and GP recruitment occurred from November 2015 to May 2016.Nineteen of the 22 patients recruited to FAME during the recruitment period consented to be contacted. Of these, 16 agreed to take part, two of whom were subsequently found to be ineligible as their current fatigue exceeded 3 months. The three who declined cited ill health. Fourteen GPs expressed initial interest, all of whom completed the telephone interview (see Table 1 for participant characteristics). Patient interviews lasted approximately 45 min and GP interviews approximately 20 min.
Table 1
Participant characteristics
Patients (n = 14)
GPs (n = 14)
Gender
Female
11
9
Male
3
5
Age (years)
Mean
52
46
Range
29–70
30–55
Fatigue score
Mean
7
Range
4–11
Years qualified
Mean
21.5
Range
6–32
Participant characteristics
Materials
The patient interview schedule (Appendix A) included questions relevant to FAME in the first section, for example, ‘How did you feel about the questionnaires you completed?’ The second section included questions specific to this study, for example, ‘Can you tell me what you did when you first noticed your fatigue?’ The GP interview schedule questions were focussed specifically on fatigue presentation in primary care for this study, for example, ‘How do you tend to deal with patients with symptoms of fatigue?’ (Appendix B). Both schedules included open questions to gather in‐depth, participant‐led data, and probes were used to explore responses.
Procedure
Participants were contacted to arrange an interview after receiving further information and consenting to take part. Participants received an information sheet including aims of the study; however, they were not told personal details about their interviewer. Prior to the start of interviews, the interviewers (both students either studying or intercalating in the Health Psychology faculty) received the same in‐house training about interview and qualitative research techniques from experienced members of the academic research department. This included becoming familiar with the interview schedule, conducting practice interviews, and receiving continuous feedback, measures taken to increase consistency and reduce interviewer bias. All interviews were conducted by phone. The interviewer (A.B. for patients, A.J. for GPs) outlined the study and answered any questions before proceeding. All interviews were audio‐recorded with participants’ permission and handwritten notes were made as necessary, as a reminder for further exploration and to aid later analysis. Interviews were transcribed verbatim and thematic analysis commenced.Ethical approval was obtained from a local National Research Ethics Service (NRES) Committee.
Data analysis
Interviews were thematically analysed using principles outlined by Braun & Clark (Braun & Clarke, 2006). An inductive approach was taken, conducting the interviews and exploring the data in the absence of pre‐defined hypotheses or theoretical frameworks using data‐driven codes. The aim was to promote in‐depth interpretation of the data and to gain an understanding of the interactions and experiences of fatigue in primary care, fully grounded in participants’ accounts of their understanding of the topic. Recruitment and data collection continued until saturation was reached, at which point new themes were no longer arising in the data (Mason, 2010). Similar patterns were emerging after 10 patient and 8 GP interviews; however, the additional interviews were conducted to enrich the depth of the preliminary analysis and check that no new relevant themes were appearing.Analysis occurred in line with the steps outlined by Braun and Clarke (2006).Phase 1: data familiarization. The lead author (K.H. – DHealthPsy) listened to all interviews and read all transcripts, to maximize data familiarization and immersion, check transcription accuracy, and check interviewer consistency and biases. Transcripts were read multiple times, each time noting ideas and potential patterns of interest. Each interviewer went through the same process with their respective interviews (i.e., patient or GP). The lead author and individual interviewers continued this pattern of working throughout the remaining phases, meeting to discuss and corroborate codes and themes.Phase 2: generating initial codes. Initial ideas were compiled as provisional codes, by working through the full interviews and noting all features of interest by manually highlighting and annotating the text. A data‐driven approach was used, rather than coding data in the light of existing theoretical frameworks. After independent familiarization and coding of the first five transcripts, the interviewer and lead author met to discuss initial codes. Regular discussion enabled the corroboration of codes and ensured the data‐driven approach was upheld.Phase 3: searching for themes. Provisional codes were then systematically reviewed across the whole data set and mapped into potential themes under broader headings. Both the interviewer and lead author continued to independently analyse and code the further nine transcripts and began to map emerging themes.Phase 4: reviewing themes. Themes were reviewed in the light of the whole data set to ensure everything of relevance had been captured and the thematic maps were refined to identify distinct and coherent themes and subthemes. This occurred in research team meetings, where discussion of the emerging themes and subthemes helped the refining and defining process.Phase 5: defining and naming themes. Themes were refined and allocated an identifying title describing the essence of the data captured.Analysis occurred on two levels. Initially, data from both groups were analysed separately, identifying themes in each party's accounts. The second level of analysis involved merging the analyses, identifying shared and independent perspectives.Throughout the analysis process, triangulation occurred, whereby the interviewer, the lead author, and another member of the research team read and discussed the transcripts and codes, to ensure emerging themes were accurate and grounded in the data and to minimize risk of bias.
Results
As illustrated in Figure 1, three core themes were identified: (1) Change from normal – the impact of fatigue; (2) The challenges of managing fatigue; and (3) The consultation. Within each theme, perspectives from patients and GPs formed subthemes, some independently and some shared. Additional quotes can be found in Appendix C.
Figure 1
Themes identified across accounts and subthemes, some related to patients, some to GPs, and some shared. Subthemes are bolded, with extra information to provide context.
Themes identified across accounts and subthemes, some related to patients, some to GPs, and some shared. Subthemes are bolded, with extra information to provide context.
1. Change from normal – the impact of fatigue
Patient
Patients described the significant impact of fatigue on them and their daily lives. This impact spanned multiple domains and often seemed similar to that previously documented for chronic fatigue. The impact was particularly marked when comparisons were made to what patients deemed ‘normal’ or how they used to be.
Cognitive impact
Patients described concentration difficulties, worsened memory, and organization problems, labelling it as ‘brain fog’ and ‘cloudy head’. This impact had a knock‐on effect for daily activities requiring these skills, for example, reading, working, and driving.It feels like your head is just really cloudy; you can't really think straight, because all you can think about is – I'm so tired.
Physical impact
Others experienced a more physical manifestation of fatigue, described as ‘insides have gone to jelly’ (P0065). Typically, people described symptoms such as having no energy, feeling tired all the time, aching, and a feeling of heaviness.
Emotional impact
Emotional consequences arose not only as a direct result of fatigue, that is, the fatigue making them feel low or less positive, but also as a secondary consequence; the fatigue prevented them doing the things they wanted or felt they should be able to, triggering feelings of irritation and frustration.It's quite frustrating and upsetting … Yeah I try and have a little pep talk with myself and just go “you used to be able to do it, you can go and do it”… but it doesn't work.
Changed self
As the statement ‘I was never, ever like that’ (P0052) demonstrates, the fatigue affected individuals by altering their core concepts of ‘self’. Patients frequently compared themselves to how they had been, stating that ‘it wasn't like them’ or that they ‘used to do [an activity] all the time’, which also affected them emotionally.
Re‐occurring impact
When discussing fatigue onset, it became apparent that many patients had experienced fatigue previously or had experienced an underlying fatigue for longer than 3 months. Within the subacute time frame, the fatigue may then have worsened or become problematic. It seemed that patients were possibly vulnerable to fatigue:… it was like fatigue on top of fatigue… I was probably working on about 50% energy the 6 months prior to the flu, and then when the flu came along it was just like I went right down to about 5%.
Shared
Sphere of impact
As well as affecting the person at a purely individual level, the fatigue affected the wider sphere of work and social life. People described adjustments made to accommodate fatigue, for example, considering working part‐time, Internet shopping, and reducing social activities. They prioritized what had to be done, in an effort to uphold responsibilities such as job commitments and caring for others.I'm kind of finding bits of my life that I can kind of just not do whilst I'm just feeling tired’. ‘I'm sort of hibernating.GPs were aware of other consequences patients experienced, but their accounts predominantly described the consequences in the context of the sphere of impact as the main driver of presentation, that is, the wider picture:They don't like being fatigued and not coping with day to day living… it's generally family commitments, commitments to partners that they are not being able to fulfil because they're feeling tired.As this overlapped with patient accounts of the sphere of impact and was a shared perspective, no subthemes specifically relating to GP accounts emerged.
2. The challenges of managing fatigue
For both parties, the difficulty of classifying and managing such a complex and heterogeneous symptom was apparent: ‘it just doesn't seem like something with edges’ (P0001). They described different challenges which culminated in the overarching, shared perspective that there is no quick fix.
Patients’ understanding
It became clear that patients strived to find a cause, but that attributed triggers varied greatly. Considerations ranged from biological (e.g., medication, thyroid problems) and emotional (e.g., relationship stress, family death) to external lifestyle factors (e.g., ‘rush rush society’ (P0100)).
Patients’ management strategies
The lack of a clear understanding posed challenges for subsequent management. Patients could not identify what was wrong in order to make the changes necessary to minimize the impact.… could it be down to work, could it be down to possibly social life the evening before or could it be done to what I'm eating or something – and I just can't pinpoint what actually triggers it off.This is not to say that patients did not utilize management strategies. They described trying numerous things to lessen fatigue, both before the appointment and afterwards, with varying degrees of success. Helpful strategies included improving diet, getting people to come round to talk things through, resting/taking a nap, and exercising.Resting was one of the more common strategies: ‘…keep topping up the battery, so you've got to keep resting’ (P0065), with the concept of pacing occasionally arising in conversation, both explicitly described and inexplicitly implied. A few patients described positive effects of engaging in increased physical activity, which seemed to be unexpected initially.I don't feel as bad after sport. When I do more sport I actually feel better.Unhelpful management strategies centred around not accommodating the fatigue.I suppose I was fighting it, I was resisting it and trying to sort of, produce some energy from somewhere…A commonality across these management strategies was that individuals seemed to have learnt or deduced for themselves what worked for them and what did not:I've discovered over time that if you over do it, it makes things worse, so just to pace it.
GP
Exploring fatigue in limited time
For GPs, the challenge was the complexity of fatigue in the context of appointment times. Although common, GPs described a number of medical conditions and problems fatigue can be associated with. On the one hand, possible physical causes needed to be explored at initial presentation:that's why it's tricky, because you almost have to cover with the first “I feel tired” conversation all of the organs in the body to work out if any of them are defective or causing the problem.On the other hand, psychological causes also need to be considered:It can point to all sorts of problems – may be emotional, may be depression, may be family problems, financial problems…GPs described the extensive process of trying to get an answer. From a ‘physical’ point of view, techniques consisted of blood tests and asking about secondary symptoms. Psychological or ‘psychosomatic’ factors were usually considered a more common alternative, elicited through questioning about life circumstances:The way I think that most of us do it is if the bloods come back normal the first time around, then they've got no other kind of symptoms to go along with anything, then you probably go down the psychological root of tiredness.Whether fatigue was attributed to psychological, physical, or a combination of factors depended on the patient's presentation and also the GP's stance towards the symptom and experience/intuition. Often, the conclusion was that fatigue is multifactorial. As such, ascertaining all the relevant information required was extremely difficult to do.
No quick fix
Across both parties’ accounts, the ultimate issue was that there was no quick fix; immediate resolution and relief was not possible.I suppose if they can give you a tablet to take and it would take it away, that's the only thing I think that would make it – but there isn't anything.It's always easy when you have a medical problem which you can treat, you can prescribe a medication … you've only got 10 min and often with those sort of people, those are the people you actually need to spend longer with, to sort of get down to the nitty‐gritty of what needs to change.
3. The consultation – the good, the bad, and the misunderstood
Both parties had clear views about what constituted a ‘good’ consultation and, conversely, what was unhelpful. Shared understanding was demonstrated, but often discordance between accounts arose, suggesting mismatches in perspectives.
The good
Patient
For patients, it was clear that a positive relationship with their doctor (e.g., perceived as supportive and approachable) was key for a positive experience during consultation.I've got a lovely doctor and he's actually talking it through, you know, he's listening to me and he's taking it seriously, he's not just kind of brushing it off and saying, oh go and get some more sleep, because that's not the issue.
GP
From GPs’ perspectives, there was a clear consensus about the importance of ‘getting it right’. This involved validating symptoms, presenting a clear picture of fatigue, and not overmedicalizing it; the overall aim being patients take advice on‐board and self‐manage.… if you've got the first consultation right and you've taken them seriously, you've communicated clearly, not too many come back… I wasn't always very good… It was just – oh, get out of my surgery really, because there's clearly nothing wrong with you that a doctor can do. And so under those circumstances people just bounced back, progressively more pissed off because doctors weren't taking them seriously.Some GPs described pre‐emptively preparing patients to set up successful consultations. For example, clear blood tests were proactively broached in an effort to avoid later disagreement and psychological factors were discussed together with physical ones early in the consultation. Analogies, such as car batteries, were deemed useful (i.e., ‘topping up’ by managing energy through planned periods of activity and rest, rather than completely draining the battery and then needing to ‘recharge’).But also introduce at that stage and say “look – if this blood test comes back as normal, it doesn't mean that I don't believe you're tired, it just means that there's not a biochemical reason for that; we can then explore that next time” – which then sets you up next time for when they come back.
The bad
Other patients did not report such positive experiences, for example, not seeing the same doctor consistently, perceived disinterest, or no adequate explanation (especially if a mental health issue was indicated). These encounters contributed to the difficulty of making sense of an already complex symptom.Yeah I mean it may have not been half‐hearted, he may have been honest, we might not find it but it didn't feel like there was much interest I suppose … I wouldn't say he was particularly bad or off or anything, it just felt like “oh it's all a bit vague”.For GPs, consultations were described as more difficult when patients were unwilling to accept the involvement of non‐physiological components, for example, lifestyle, diet, work patterns, and stress, mainly when the GP suspected the involvement of factors labelled as more ‘psychological’, ‘emotional’, or ‘psychosomatic’, particularly if not broached sensitively.…whereas if you kind of jump in with – do you think you're depressed, it will put people's backs up.Reassuring patients was often spoken about in terms of ‘persuasion’, indicating a certain unwillingness of patients to accept that ‘nothing is wrong’.
Shared
Patients and GPs were in agreement about the driver of initial presentation. Patients rarely presented to GPs in the very first weeks of fatigue if this was their primary health complaint. Both groups described a sentiment of ‘normalness’. Only once fatigue persisted for a month or two, did concern arise, or the impact on daily living became unmanageable.…just constantly thinking ‘God, I'm tired’, until it got to a point where I thought this is ridiculous.…4–8 weeks, I think people probably put up with fatigue for a matter of weeks, but once it goes into anything beyond that, then it gets to a stage where they feel happy to come and highlight it and see if there's anything that can be done or anything underlying.… it's come to the realisation that their degree of tiredness is actually more than their partner's, their mum, you know, the people around them.Both parties also shared a need for more resources. Patient suggestions included group workshops, leaflets, posters, forums, and video, for extra support, information, and possibility of reducing the fatigue.I don't wat to sit around going, ‘oh, I'm so tired’ – but I'm really interesting in sharing information and finding out what has worked for people…GPs also reacted positively to the suggestion of fatigue resources. Few GPs were aware of recent guidelines [2], and most did not allude to a care pathway strategy, rather employing a ‘watch‐and‐wait’ approach or expecting multiple follow‐up appointments. All but one GP were very much in favour of extra resources: (1) to address topics they did not have time to cover in the consultation, (2) to provide a platform for discussions in consultations, and/or (3) to give patients something to take away and help self‐management. The most dominant topic was simply the need for more time.…giving them something in their hand which they can actually go away and read and look at … because it's difficult to explain and get everything you want to in the time that you have.
The misunderstood
If no underlying physiological cause was identified, GPs tried to equip patients with helpful information, for example, pacing, CBT, meditation, and lifestyle changes. Non‐return was seen as indicative of fatigue reduction.I'm assuming it must be working because they're not – they're not coming back to me. If it wasn't working I'm assuming they would come back to me…However, non‐return did not necessarily signal a resolution of the problem. On the contrary, patients’ fatigue was still present, but they thought that doctors cannot do anything. This was not a reflection on the doctors, but rather patients’ difficulty in understanding their fatigue and lack of distinct cause.… If they check your bloods and there's nothing there – there's nothing more they can do – is there?Another discordant topic was that of blood tests. GPs used blood tests to exclude various health conditions and ensure they were not missing something, despite possibly having suspicions of non‐physiological factor involvement. Clear blood tests were interpreted as positive and reassuring and led to psychosocial factors becoming the focus of conversation.Well often you have a suspicion that it is psychological and there's nothing really wrong, but you end up doing the tests anyway because you need to exclude them for, you know, your own peace of mind and also patient reassurance.However, clear tests often seemed to add to the confusion for patients and did not necessarily reassure them:they look at my results and say, wow, this is good for a 70 year old, you've got nothing to worry about… So then when you start feeling tired and all the rest of it, you think – oh my word – what is this?
Discussion
Summary
To our knowledge, this qualitative study is the first to combine patient and GP perspectives of subacute fatigue in primary care. Three main overarching themes were identified across both parties’ accounts describing the impact of fatigue, the challenges of managing fatigue, and characteristics of the consultation. Patients and GPs shared the viewpoint that the heterogeneous nature of fatigue was problematic; exploring the aetiology of the fatigue, and doing so in the limited appointment time available, was difficult, as was the fact that the symptom could not be ‘fixed’ quickly. Discordance in perspectives arose when trying to understand the factors involved. GPs often shifted to psychological explanations, especially once clear physiological test results were received. Patients described ongoing confusion about what was causing the fatigue though, suggesting that GPs’ knowledge was not necessarily transferred. Patients not re‐presenting was seen as indicative of the resolution of the issue. However, non‐return tended to be because patients thought the doctors could not do anything for them.
Comparison with existing literature
Interestingly, subacute fatigue appears phenomenologically similar to chronic fatigue, with similar consequences described to those reported in CFS, for example, ‘brain fog’, exhaustion, and the transformation of identity (Asbring & Narvanen, 2003; Jelbert et al., 2010; NICE, 2007; Ocon, 2013). Although patients stated at entry to this study they were experiencing subacute fatigue (<3 months), many described fatigue as a long‐standing problem, experienced around periods of illness, for example. This is not surprising as pre‐morbid fatigue has been shown to be a significant risk factor of post‐infectious fatigue (Petersen, Thomas, Hamilton, & White, 2006; Wessely et al., 1995). Thus, findings from this study should potentially be interpreted in relation to a ‘subacute episode’ of fatigue. Patients also commonly normalized fatigue, resulting in delayed help seeking. Patients’ fatigue history should be discussed during consultation, which may help identify individuals vulnerable to prolonged fatigue.On the whole, GPs were aware of various biopsychosocial factors involved in fatigue and potential management strategies. However, patients seldom reported receiving clear explanations for their fatigue, even for those reporting positive experiences. As Kirmayer et al. (2004) describe, sense‐making is a process occurring between a patient, publically occurring illness narratives, and the health care professional. However, patients’ consideration of lots different causes, difficulty managing the symptom, desire for extra resources, and, in some cases, not returning to the doctor, suggests this two‐way sense‐making process was not occurring. Such discordance is common in multifactorial conditions where explanations may be deemed insufficient by patients (Salmon, Peters, & Stanley, 1999) and perceived patient resistance may mean an understanding acceptable to both parties is not reached (Raine et al., 2004). Differences in how negative tests and non‐return were perceived exemplify this mismatch. GPs viewed clear blood tests as reassuring and interpreted non‐return as fatigue having resolved, but clear blood tests were confusing for patients and not returning was a product of the belief that doctors could not provide a resolution. This mirrors conclusions drawn from a systematic review and meta‐analysis (Rolfe & Burton, 2013); diagnostic tests as exclusion tools for a range of symptoms do little to reassure patients or reduce their anxiety or symptoms and may reduce subsequent GP visits.Burton, Lucassen, Aamland, and Hartman (2015) and Dowrick, Ring, Humphris, and Salmon (2004) advocate a rational and effective explanation for ‘unexplained’ symptoms. Physical and psychological factors should be linked by combining patients’ lived experience with clinical knowledge, a practice which requires a shared understanding between the two parties. This is in line with the move away from the traditional biomedical model of health care in which the GP holds a relatively paternalistic role, towards a more individualistic approach (Fong Ha & Longnecker, 2010). This seems particularly important after a negative medical test. However, findings from this current study suggest doctors seemed to shift focus to purely psychosocial factors after negative tests, as opposed to including other non‐pathological biological factors (such as the stress response or circadian rhythms) in a truly biopsychosocial model of fatigue.Additionally, patients are also likely to have tried some management techniques before presenting; eliciting this is an important part of listening to the patient and creating a coherent narrative (Burton et al., 2015). However, the time required for the shared understanding and patient‐centred approach may be in stark contrast to allotted consultation time, which in the United Kingdom is typically around 10 min for routine appointments (Oxtoby, 2010). Hannon et al. (2012) reported the same issue in CFS, with GPs describing that 10‐min consultations meant getting an understanding of varied and potentially complex symptoms was a challenge. It should be noted that Hannon et al. (2012) study was also conducted in England. Therefore, it is worth considering that in countries where appointment times are longer, for example, Sweden and the United States where average primary care consultation time is over 20 min (Irving et al., 2017), it may be easier to move towards a shared and individually relevant understanding.Hannon et al. (2012) subsequently suggest providing leaflets which outline management options and the opportunity to return to discuss information in more detail. These suggestions provide a potential avenue for early intervention following this study, namely to prevent the possible perpetuation of subacute fatigue to longer lasting fatigue. As described in the cognitive behavioural model of fatigue (Deary et al., 2007), addressing factors such as excessive rest, unhelpful illness attributions, and sensitization in patient information materials may help support the sense‐making process and disrupt perpetuating cycles (if they exist), within the consultation time constraints.
Strengths and limitations
A strength of this study is its novel focus on the early stages of fatigue. Findings suggest mismatches in GP and patient perspectives may arise at initial presentation, as opposed to in the latter stages. Appointments at this early stage may, therefore, be important in determining the trajectory of fatigue. However, GPs and patients were not directly matched; some GPs may not have treated any of the patients included and, conversely, some patients may have visited a GP who did not participate. Thus, only general conclusions can be drawn, rather than drawing direct comparisons. Also, GPs worked at surgeries which were part of the larger FAME study, leading to potential bias due to increased levels of understanding around fatigue. Additionally, this study was conducted in primary care practices in the United Kingdom which, as Oxtoby (2010) points out, are under strain when it comes to appointment time allocation. Therefore, findings should be interpreted with caution in the context of other health care settings and other countries’ health care systems.
Implications for research and practice
Future research could compare perspectives from matched GPs and patients in other primary care sites, to further these findings and investigate what consultation components underlie the knowledge transfer gap (e.g., lack of time, expectation mismatch, communication style).It is important to note that GPs seemed well‐informed but are likely to be time‐constrained in imparting information to patients. In the absence of lengthening consultations, data suggest a number of useful considerations, summarized in Table 2. For example, our findings suggest that addressing fatigue in a multifactorial and personally relevant manner (e.g., taking patient experience into account and proactively providing an overview of the interlinking and biopsychosocial nature of fatigue) may increase the knowledge transfer occurring between the two parties, in essence providing coherent ‘symptom stories’ that can lead to practical, individual management advice (Burton et al., 2015). Importantly, although in line with literature and previous findings, these recommendations should be interpreted cautiously, due to the small nature of the current study.
Table 2
Considerations from current research and existing literature findings for subacute fatigue management in primary care
Consideration
1. Ascertain patient's fatigue history, potential risk for chronicity, and previous management techniques (Fong Ha & Longnecker, 2010)
2. Pre‐emptively discuss the meaning of negative physiological tests, being careful not to exclude all biological factors from further conversations (Burton et al., 2015)
3. Address fatigue in a flexible and multifactorial manner as early as possible, highlighting interlinking physiological and psychological mechanisms relevant to the patient
4. Check patient understanding (Kirmayer et al., 2004)
5. Double or follow‐up appointments may be necessary (Hannon et al., 2012)
6. Actively inviting patients back to discuss and monitor self‐management could be considered
7. Pre‐existing CFS management interventions could be valuable preventative tools
Considerations from current research and existing literature findings for subacute fatigue management in primary careIn conclusion, fatigue is a complex and potentially re‐occurring problem. Even as a symptom in the early stages or experienced in shorter episodes, patients experienced negative impact. GPs’ understanding of fatigue and non‐physiological management strategies did not seem to transfer to patients, which may contribute to unresolved and ongoing fatigue. Pre‐emptive biopsychosocial explanations and encouraging re‐presentation could help patients during this early stage.
Funding
This work was supported by the National Institute of Health Research (Grant Number RP‐DG‐1213‐10001).
Ethical approval
Ethical approval was obtained from NRES Committee South Central – Hampshire A.