Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Background NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management. Methods Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset. Results Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care. Conclusion The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.


Background
Chronic Fatigue Syndrome (CFS) or Myalgic Encephalitis (ME) is a symptomatically defined condition with a principal complaint of severe, persistent, disabling fatigue which has been present for 6 months or more [1]. The symptom of fatigue must be of new or definite onset (i.e. not lifelong), and produces a substantial reduction in the patient's previous level of occupational, educational, social, or personal activities [2]. The diagnosis of CFS/ME remains controversial and debated but it is increasingly recognised as a clinical entity in primary care, although only about half of general practitioners/family physicians (GPs/FPs) feel confident with making the diagnosis [3].
A recent report produced for the UK Chief Medical Officer by the CFS/ME working group, placed UK population prevalence at least 0.2-0.4% [4], being twice as common in women as in men, and that the syndrome affects all social classes and ethnic groups to a similar extent. Wessely et al. found the point prevalence of CFS/ME to be 2.6% [5], and that rates did not vary with social class.
The Chief Medical Officer report stated that patients should be diagnosed earlier and given better access to treatment, with a mutual management approach as its key component. This approach should be patient-centred therapy delivered by a trained multi-disciplinary team. The report also emphasised the need to provide these services locally [4]. This approach is echoed in the NICE guidelines for CFS/ME [6] which advocates a prominent role for primary care and that healthcare professionals should aim to establish a supportive and collaborative relationship, working in partnership with the adult or child with CFS/ME, family, and carers to facilitate their effective management.
Practice nurses provide a substantial amount of care to patients in UK primary care. Practice nurses are registered general nurses who have varied post registration qualifications and expertise. They are employed by the GP/FP. Their role is being increased in the management of patients with long term conditions [7] but currently have little or no formal input into the care of patients with CFS/ ME. It has been proposed that nurses might have a potential role in the management of patients with CFS/ME due to their ability to provide holistic care [8], developing a relationship and validating the patient's illness experience, identifying patients' expressed needs, and providing appropriate information [8]. A potential role of nurses in the management of patients with medically unexplained symptoms (MUS) [9] has been suggested as a care co-ordinator who gets to know and support not only the patient, but also cares. Such a role could be especially useful for the more severely affected CFS/ME patients who experience barriers in accessing all forms of health care. It has been suggested that these patients could be managed by nurses with programmes structured around mobility, personal care and communication [10].
The expansion of the nursing role in the management of patients with CFS/ME is, however, not without barriers. Attitudes of practice nurses to CFS/ME are unknown, but there is evidence amongst GPs/FPs of scepticism towards CFS/ME patients [11,12] who, unsurprisingly therefore, are generally dissatisfied with the medical care they receive [13]. Many doctors perceive CFS/ME patients to have undesirable traits, and it has been argued that these attitudes towards patients often lead to problems with management [11]. The origin of these attitudes were perceived to be a lack of precise bodily location for the complaints, and the reclassification of the syndrome over time, producing conflict between doctor and patient over causation and management [14] and an apparent unwillingness of patients to disclose psychosocial components of their illness models [15]. Previous literature provides evidence of doctor-patient conflict due to disagreement over the causes and management of CFS [12], and of more positive attitudes amongst GPs/FPs who accept CFS/ME as a recognizable clinical entity [16].
Barriers have been described which might reduce the potential for involving practice nurses in the management of patients with emotional problems that are often associated with a chronic illness: there is evidence that practice nurses are not, and do not feel, fully prepared to work with patients with conditions such as depression, and may be unmotivated to acquire the necessary further skills [17]. A comparative study examining practice nurses' current experiences of caring for patients with mental health problems found 52% lacked any formal mental health training [18] but the majority were keen to expand their role and knowledge in mental health care if appropriate support and training was offered to cover the training needs they identified. There are no previous studies which explore practice nurses' attitudes to patients with CFS/ME in primary care.
The NICE guidelines encourage practice nurses to take an active role in the management of CFS/ME in primary care, and policy dictates that nurses should play a bigger role in managing patients with long term conditions, it is thus essential to explore their beliefs about CFS/ME and attitudes towards patients suffering with this condition. It is also important to understand practice nurses' views on what role they might play in management of patients with CFS/ME and identify any training needs. This was the aim of the study reported here.

Methods
This qualitative study had been reviewed and approved by the Eastern MREC (reference 03/5/62) and had PCT (Primary Care Trust) R&D approval. Semi-structured interviews were carried out with practice nurses in North West England working in practices that had been previously approached to participate in the FINE trial [19]. Sampling for this qualitative study was purposive and sought to achieve maximum variation in relation to nurses': age, practice location and size of practice and length of time as a practice nurse. This was not a representative sample of practice nurses, rather a purposive sample in order to access a range of views. Seventy practice nurses in participating practice were invited by letter with an accompanying information sheet and contacted subsequently by telephone to discuss the study and ask them to participate in an interview. Of these, 29 agreed to be interviewed. Many of those who declined stated when contacted by telephone that they would not be interviewed because they knew very little about CFS/ME. Semi-structured interviews were conducted (by RD, JS and NS) between June 2006 and February 2008. Interviews lasted between 12 and 45 minutes. All participants were female and were registered general nurses, but with a variety of additional qualifications. The mean length of time as a practice nurse was 9.3 years (range 1-23). Further participant details are presented in Table 1.
An interview guide provided a flexible framework for questioning and explored a number of areas: the cause of CFS/ME, previous experience of patients with CFS/ME, potential role and anticipated training needs, and experience of the psychological management of patients with long term conditions. The interviewer combined open questions to elicit free responses with focused questions for probing and prompting. Interviews were digitally recorded and transcribed verbatim.
Analysis proceeded in parallel with the interviews and was inductive, taking an interpretative stance [20,21]. Transcripts were read and discussed by researchers from different professional backgrounds (primary care, psychology and nursing) so increasing the trustworthiness of the analysis [22]. Coding was iterative and was informed by the accumulating data and continuing thematic analysis. Thematic categories were identified in initial interviews which were then tested or explored in subsequent interviews where disconfirmatory evidence was sought [20]. Interpretation and coding of data was undertaken by CCG, SP, KL, RD, JS and NS individually and the themes were agreed through discussion. The importance of reflexivity [20] was discussed within the research team, with medical researchers (CCG, JS and RD) particularly reflecting on how their clinical perspective impacted on collection, analysis and interpretation of the data. In reporting the final analysis the data are presented to illustrate the range and commonality of meaning of each category.

Results
Data are presented verbatim and the practice nurse identifier is displayed in brackets. Data are organised into six themes: i) Developing the knowledge; ii) Understanding the condition; iii) Understanding the patient; iv) Labelling and diagnostic uncertainty; v) Using existing skills; vi) Developing another role.

i) Developing the knowledge
Without exception, practice nurses reported having limited experience of working with patients with CFS/ME and no (or extremely limited) training and training opportunities. Indeed several practice nurses approached to take the part in the study were initially reluctant stating they didn't feel they had anything to offer on the subject: 'I mean we all sort of know it's there but, but no, well I, I personally think I've never, had any formal training and never, heard of any, particularly.' (PN11) As a consequence, they were uncertain about how the condition presented:

ii) Understanding the condition
Given the limited formal education and training, it was unsurprising that practice nurses held a wide range of illness models of CFS/ME. These informed their views about how the condition should be managed. Whilst some viewed CFS/ME as having its origins in a physical disease process (usually a viral infection or compromised immunity system) most considered it as a multifaceted condition and described CFS/ME patients using a biopsychosocial model: As well as describing themselves as having good listening skills and experience in facilitating patients' disclosure, they also described other ways in which they currently worked psychologically with patients with long term conditions. Primarily they described this in terms of education and motivation around lifestyle issues:

'A lot of motivation and encouragement and just sort of reinforcement of information they already know.' (PN25)
'

vi) Developing (yet) another role
For the most part, practice nurses suggested that management of CFS/ME patients was best placed in primary care: 'In primary care we look more at the whole patient rather than just one thing.' (PN23) 'I think to come to your normal surgery and be able to access that type of care would be very positive for patients.' They suggested that management should involve a dual approach -to identify or exclude any physical problems and to work psychologically with patients.
'I think a sympathetic GP is definitely of primary importance and then erm assess any underlying problems making sure they are physically, er, any other physical abnormalities or problems are excluded erm and counselling, appropriate counselling, with a counsellor who understands the illness and knows about it.' (PN24) Most practice nurses expressed an interest in developing their role in the management of patients with CFS/ME, however a minority did not. This was principally amongst those who did not think CFS/ME was a disease and therefore that this was not a legitimate activity for the practice nurse: A further barrier to working with CFS/ME patients was job satisfaction. Some participants described this coming from seeing patients' condition improve. Where participants considered CFS/ME to have a poor prognosis, it was felt there was little intrinsic reward in managing these patients and hence not a good use of their skills: Nurses identified a number of ways which would facilitate the development of their role in this way. Since all had disclosed that their knowledge about CFS/ME was limited, they felt that training was needed that covered basic knowledge such as symptoms and presentation and diagnosis. Moreover practice nurses wanted an explicit protocol to follow: Some believed this could make management relatively straightforward: 'really I think that once a diagnosis has been made and the support framework has been set up then I think it is a case of just following the guidelines really.' (PN5) In addition to knowledge and guidelines, respondents also wanted further training in psychological manage-ment, feeling unhappy about using psychological approaches for fear of causing harm: 'You can't have anyone give psychological support to people, ah, because it's quite a dangerous area really.' (PN23) Participants believed their training needs were substantial and were sceptical about whether these would be adequately met by within current arrangements: 'It's like everything else they'd give us a two-day course and expect us to do it...it's silly, it's like giving you a two day course in diabetes and say "go and see the diabetic patients".' (PN26) Practice nurses also indicated that even if they were to undergo adequate training about CFS/ME and take a greater role in management, they would still require support, both during the training process and subsequent supervision, to support them in their work:

Summary of main findings
Although practice nurses were aware of CFS/ME as a clinical condition, they had limited knowledge and experience of the clinical features of the illness, its aetiology and appropriate management strategies. They were aware that there is no definitive diagnostic test available making diagnosis difficult, and understood that CFS/ME is viewed as a contentious illness with the diagnosis itself held with some scepticism. Most practice nurses viewed CFS/ME in biopsychosocial terms, though others had less holistic or coherent illness models.
Practice nurses reported receiving little formal training about CFS/ME with the majority of their knowledge of CFS/ME being gained by personal research or experience, and they explained how encounters with people with CFS/ME outside of work generated acceptance, sympathy and interest in the condition; and encounters involving close personal friends particularly effective at forming strong opinions on the causative factors (and lack of blame) of CFS/ME.
Many nurses were keen to expand their current knowledge and gain more experience in the care of patients with CFS/ ME, and felt that such a role embraced their present strengths of organization and motivation in chronic disease management, and the commonly held view that nurses are more approachable and sympathetic than other health care professionals and have skills in educational and motivational intervention. However, nurses were apprehensive about the prospect of taking on a new role without sufficient training and that they expressed doubts about whether their GP/FP employers' would be happy for them to expand their role in this area, given the demands of the Quality and Outcomes Framework of the GP Contract [23]. They recognised that their knowledge about CFS/ME was limited, and therefore any training which was provided would have to include basic knowledge about the condition and an explicit protocol and training in psychological interventions. They also described how they would need on-going support, both during the training process and when taking on the proposed role, through formal supervision, particularly from those with psychological expertise.

Strengths and Limitations
This is the first study to report on the attitudes of practice nurses towards CFS/ME and their views highlight the potential barriers to the development of this role with this patient group. Data are presented from interviews with practice nurses over a wide geographical area and drawn from suburban, rural and inner city areas. This purposive sampling enabled us to access a range of views. Using authors from different professional and academic backgrounds is a recognised technique for increasing the trustworthiness of the analysis [21].
A limitation was the low response rate, with many invited nurses declining to participate stating that this was because they perceived they had a lack of knowledge about CFS/ME. The opinions expressed in the interviews may not be similar to all nurses in all practices, particularly those working in practices not participating in the FINE trial, who may be even less well informed than those who agreed to be interviewed. It is important to emphasize that practice staff, including nurses, in practices participating in the FINE trial [19], had little involvement in the actual study which simply involved referral to the trial by family physicians.

Comparison with existing literature
CFS/ME is seen as a contentious illness by many of the practice nurses in this study. Some respondents viewed the diagnosis of CFS/ME with scepticism, similar to descriptions of the views of GPs/FPs in previous studies [11,12], where GPs/FPs did not consider CFS/ME to be a genuine illness, nor feel confident in neither its diagnosis nor management [3]. The issue is different for nurses who, unlike GPs/FPs, do not have the responsibility for making the diagnosis, but who still need to believe in the condi-tion to manage the patient empathetically. Practice nurses described how the diagnosis of CFS/ME is not the endpoint for the professional or the patient [24]. Nurses in this study gained information about CFS/ME from personal friends and their own experience which was powerful in influencing their views on the condition. This resonates with the sources of evidence that GPs/FPs report using to inform their knowledge base about CFS/ME [14].
The NICE guidelines suggest that healthcare professionals should aim to establish a supportive and collaborative relationship with patients with CFS/ME to facilitate their effective management [6]; other guidelines stress that where possible CFS/ME should be managed locally [4], and practice nurses interviewed concurred with these suggestions. The NICE guidelines allude to a role for practice nurses as care coordinators and suggest that graded exercise and CBT (Cognitive Behavioural Therapy) approaches should be used in the management of patients with CFS/ME.
Respondents suggest that the holistic approach attributed to nurses [17] would be effective in the management of patients with CFS/ME; they were unclear, however, about what the current evidence-base for management of CFS/ ME is. Whilst they could describe a range of psychological approaches they already used in their current role, they tended to be limited to supportive listening and counselling, and they perceived that more formal training in psychological approaches would be necessary for working with patients with CFS/ME. This is consistent with previous findings [18] that demonstrated that practice nurses lack confidence in managing psychological problems in patients with mental health problems. This is not, however, peculiar to nurses: GPs/FPs also often lack confidence in taking a psychological approach with patients with CFS/ME [25] and commonly devalue their skills in psychological management of patients with unexplained symptoms [26].

Implications for future research and clinical practice
If nurse-led therapeutic interventions are to be implemented in clinical practice, the training needs identified within this paper must be addressed. Practice nurses identified these to be across the entire spectrum including the requirement for knowledge about the epidemiology, aetiology, clinical features, diagnosis, and management of CFS/ME. CFS/ME as a condition needs to be demystified. In addition, they highlighted their own insecurities and lack of knowledge of the evidence-base about the different management approaches of patients with CFS/ME. Findings suggest that evidence-based diagnosis and management pathways would be vital for the effective delivery of any intervention in primary care for patients with CFS/ME and that nurses may have a role within a multidisciplinary approach. The relative rarity of CFS/ME in any one practice population (especially compared with, say, asthma or diabetes), would make it inefficient and difficult for practice nurses to develop and sustain expertise, and this is recognized by the practice nurses in this study. This is a critical issue for the management of CFS in primary care which would suggest that a multidisciplinary service based in a PCT (Primary Care Trust) rather than in individual practices may be more appropriate. The practice nurse role would then be limited to identification of patients with CFS/ME and referral to such a team, and offering support to patients (a role suggested by some nurse in this study) rather than developing skills in the active management of such patients.
The scepticism displayed by some of the practice nurses interviewed, reflecting that seen in other members of the medical profession, must be challenged when producing future training strategies. If practice nurses are to have a role in the management of patients with CFS/ME in primary care, the attitudes of this group and their beliefs about CFS/ME and its management will need to be addressed. It is vital that negative attitudes expressed by some respondents in this study are challenged as these attitudes and lack of knowledge will make it difficult to implement current policy and guidelines [6] in UK primary care. Education and training, at least initially incorporating these beliefs but later challenging them, will be needed.
Practice nurses also expressed the need for protocols to support them in the management of CFS/ME and they could usefully be directed to the emerging "Map of Medicine" guidelines [27]. Knowledge acquisition around the current evidence-base for treatment alone will be insufficient. Practice nurses need training to develop appropriate skills such as the competent use of a CBT approach which is evidence-based for patients for CFS/ME, unlike the counselling approach which practice nurses in this study suggested might be the appropriate intervention. In addition, the nurses in our study expressed a need for supervision if they are to take on a role in the management of patients with CFS/ME. This has implications for the cost of providing such a service either at practice or PCT level.

Conclusion
Practice Nurses in this study demonstrate limited understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.