Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic E

[Denise]

Apologies if this has been posted elsewhere (please delete if it has been):

Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study

• Kerin Bayliss
• Lisa Riste,
• Rebecca Band,
• Sarah Peters,
• Alison Wearden,
• Karina Lovell,
• Louise Fisher and
• Carolyn A Chew-Graham

BMC Family PracticeBMC series – open, inclusive and trusted201617:66
DOI: 10.1186/s12875-016-0453-8

© Bayliss et al. 2016

Received: 3 November 2015

Accepted: 9 May 2016

Published: 4 June 2016


Abstract
Background

Previous research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.


Methods

Semi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.


Results

When used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.


Conclusion

While barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management.


Keywords
Chronic fatigue syndrome (CFS) Myalgic Encephalomyelitis (ME) Resources Training Implementation Qualitative research Primary health care

 

[JaimeS]

Fascinating how doctors perceived ME as something super-rare that they were unlikely to encounter in practice. Very wrong idea, but then I noted that one physician stated they probably didn't diagnose it often because of the 'associations' with "CFS/ME" as they call it here.

I also liked the comment that even to those who believed it psychiatric, ME was a 'low priority' diagnosis: not as serious as someone having a schizophrenic episode!

I can't speak to the quality of the materials they handed out, but this paper is how qualitative research should be done. It reveals points of view that are new and interesting, and clearly do not originate with the authors.

-J

 

[Esther12]

This included an online training module for GPs (available on the Royal College for General Practice website) and a resource pack for patients.

This is here, but I can't access it: http://www.rcgp.org.uk/learning/onl...tigue-syndrome-myalgic-encephalomyelitis.aspx

The study presented a unique opportunity to explore the extent to which CFS/ME training and resources can be implemented in routine primary care, leading to a better understanding of the barriers and facilitators to the adoption and integration of new practices associated with medically unexplained conditions. The use of theoretical models of implementation is recommended to enable researchers to identify the conditions necessary for interventions to be successfully adopted in routine primary care [10].

Reading that made me think 'bet their outcomes were poor'. I've not been able to see anything about whether they released any data on what impact METRIC had on patient's health (which one would think is important).

I think that the transcripts of comments from GPs would have been more interesting than the paper, just because its always interesting to get a look at what GPs say about ME/CFS in private. Some quotes:

“not all doctors believe that there is Chronic Fatigue Syndrome and they just think it’s in the patient’s head.” (GPB01)

“[CFS/ME] is difficult, there are no easy answers. You know, why would you be interested in that? It doesn’t feel like there’s a big win for the doctor, I think.” (GPA05)

“It’s not attractive, I got forced in a way, going back right to the very beginning, by a belligerent husband, I had to do something, it didn’t matter what, do something… But, I do think the topic is off putting… it’s not easy going.” (GPA03)

“I think early on, doctors divide into those who feel that they can manage difficult things and those who feel that actually they are primary care physicians, so they should be doing primary work, and that things that are more difficult need somebody else to do it. And I remember a GP saying to me once, what’s the point of learning all these skills for picking up cues and eliciting people’s psychological problems, if you haven’t got a counsellor to refer them to? In other words, they didn’t see its management as their job… it is the test of stamina for the doctor, undoubtedly” (GPA05)

“I used to be very reluctant to make the diagnosis, because I thought it was quite stigmatising, and because I thought people did, kind of, act to the label; and I still think that does go on, actually (GPA05)

“it’s the confidence in being able to make a diagnosis and actually the ability to get the patient’s story accurately and, you know… So, I probably under diagnosed.” (GPC01)

“It’s constantly very busy… there are new QOF things to do, and then also there’s all the changes with commissioning et cetera, we’re to be more involved in that. I think it’s just a workload issue, and unfortunately, there are a lot of clinical areas where many of us are interested, but we just can’t get round to do.” (GPA01)

“It’s not top of anyone’s agenda and it’s not realistic to expect it to be… I know my colleagues were disinterested in it because it was not seen… it’s one that you’ll see rarely, therefore, the amount of importance you can give it isn’t that much. It’s not interesting to [GPs] it’s not as important as somebody who’s having a heart attack or trauma or a schizophrenic breakdown or bipolar. So even in the mental health, physical crossover it’s not top of anybody’s agenda” (GPA04)

The packs provided were often incomplete and did not include the information leaflets. GPs stated that this was due to a number of reasons which included misplacing the resource pack, or forgetting what should be provided. This meant that the objective of using the resource pack as a tool to build a positive relationship with the patient within the consultation was not achieved:

“I wonder did I mail them? I might have done one or two, but I was probably too mean to spend the postage. I might have mailed one or two.” (GPA03)

“Initially I thought it was very good but, again, because it’s paperwork and, having to be honest, I’ve no idea where it is and if somebody came in now and asked for it I wouldn’t have it because it’s paperwork. (GPA04)

‘I actually forgot there was a DVD… so I didn’t give her the DVD.” (GPA02)

Bit of a relief to have GPs not take the information packs seriously tbh. Some of this stuff is pretty funny:

my pack has nothing in it.... When I went for it… I said I understand you’ve got a pack for me. Couldn’t find them… I had to go back for it. The receptionist went on the hunt for it and found it in one of the offices somewhere and gave me it, but it didn’t have any of this information. (patient 39)

As a result of not receiving this information, many patients reported disengaging from primary care as this reinforced belief that GPs do not prioritise CFS/ME:

it was very frustrating to be honest, so I gave up in the end. I was just frustrated really. (patient 11)

GPs who completed the training said that their knowledge of CFS/ME had improved and they had established a positive relationship with their patients as they felt they now had something to offer:

“It made me much more confident that there was an appropriate approach… [I have] a more clear idea in my own mind of how to manage it, as opposed to how to treat it, and to be confident that those are sensible things to do, and that they are endorsed. It has made me more willing to use the label, because then I can follow up with saying; and this is what it means, and this is what we’re going to do, and this what’s likely to happen… You have to say, right, I’ll see you again in two weeks’ time… like a lot of things, you spend time to make time; if you invest that time and people get better, then it saves time” (GPA05)

Where's the evidence that they actually were offering something of value to patients though?!

Thought this was a bit interesting:

Furthermore, some GPs said they did not want to discuss CFS/ME with patients who had not mentioned it to them for a number of years as this had the potential to increase their, already stretched workload. This issue was highlighted by the note screening process in one practice, where they excluded patients from the study who had been diagnosed with CFS/ME by another practice as they were not sure if it was an accurate diagnosis. Respondents said that CFS/ME had never been discussed with these patients:

What I don’t always endorse is people who arrive with a diagnosis that I haven’t made, because I think, I don’t know the basis on which that diagnosis was made… I wouldn’t bring it up” (GPA05)

“I think you need more backup… you say; oh, you need graded exercise, you need a bit of physio, and you think; well, where the bloody hell are you going to get it? Sort of an ME specialist nurse or an ME specialist…even one for the whole of Manchester or the North West wouldn’t be a big deal because they could be accessed by phone. So, yes… if I had a specialist nurse, like I’ve got an MS specialist nurse, if I had an ME specialist nurse and they could cover hundreds of practices because there’s not a big uptake, that you could tap into their expertise and say; look, is there a day centre where they tend to get together or could they go to the…what’s that course? Could they go to a back to work course, at the moment they’re just feeling much better and when is an appropriate point for them to go to the low activity back to work?” (GPA04)

Recommendations for practice
Barriers to the implementation of CFS/ME resources in primary care means that many patients will be left without the support they need to manage their symptoms and work towards recovery.

What evidence is there that there the implementation of these CFS/ME resources in primary care would have helped patients recover?

The GPs in this study supported the idea that patients could bring information to the consultation, as long as it was from a reliable source.

That rules out Wearden.

Our analysis demonstrated that when used correctly the information included in the resource for the diagnosis and management of CFS/ME was beneficial to both patients and GPs in the diagnosis and management of CFS/ME.

How did it do that?

 

[Esther12]

Is something odd going on with the open peer review for this paper?

@Tom Kindlon pointed to this peer review:

http://www.biomedcentral.com/imedia/1855199272201208_comment.pdf

Reviewer’s report
Title: Implementing resources to support the diagnosis and management of Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care. A qualitative study.
Version: 0 Date: 28 Dec 2015
Reviewer: Muhammad Alotaibi
Reviewer’s report:
Are the methods appropriate and well described?
If not, please specify what is required in your comments to the authors.
No
Does the work include the necessary controls?
If not, please specify which controls are required in your comments to the authors.
No
Are the conclusions drawn adequately supported by the data shown?
If not, please explain in your comments to the authors.
No
Are you able to assess any statistics in the manuscript or would you recommend an
additional statistical review?
If an additional statistical review is recommended, please specify what aspects require further
assessment in your comments to the editors.
I am able to assess the statistics
Quality of written English
Please indicate the quality of language in the manuscript:
Acceptable
Declaration of competing interests
Please complete a declaration of competing interests, considering the following questions:
1. Have you in the past five years received reimbursements, fees, funding, or salary from an organisation that may in any way gain or lose financially from the publication of this manuscript, either now or in the future?
2. Do you hold any stocks or shares in an organisation that may in any way gain or lose financially from the publication of this manuscript, either now or in the future?
3. Do you hold or are you currently applying for any patents relating to the content of the manuscript?
4. Have you received reimbursements, fees, funding, or salary from an organization that holds or has applied for patents relating to the content of the manuscript?
5. Do you have any other financial competing interests?
6. Do you have any non-financial competing interests in relation to this paper?
If you can answer no to all of the above, write 'I declare that I have no competing interests' below. If your reply is yes to any, please give details below.
I declare that I have no competing interests
I agree to the open peer review policy of the journal. I understand that my name will be included on my report to the authors and, if the manuscript is accepted for publication, my named report including any attachments I upload will be posted on the website along with the authors' responses. I agree for my report to be made available under an Open Access Creative Commons CC-BY license (http://creativecommons.org/licenses/by/4.0/). I understand that any comments which I do not wish to be included in my named report can be included as confidential comments to the editors, which will not be published.
I agree to the open peer review policy of the journal

That's the only peer review available [edit: there's also another peer review report which only shows up half the time], and it doesn't really match up with the responses (or sound like a recommendation for the paper to be published).

Reviewer's Report Reviewer 1 report
28 Dec 2015
Resubmission - Version 2
Author's comment 03 Feb 2016
Resubmission - Version 3
Author's comment 30 Mar 2016
Editorial acceptance

06 May 2016
Published

04 Jun 2016

http://www.biomedcentral.com/1471-2296/17/66/prepub

Got to agree with

Are the conclusions drawn adequately supported by the data shown?
If not, please explain in your comments to the authors.
No

 

[Dolphin]

Is something odd going on with the open peer review for this paper?

@Tom Kindlon pointed to this peer review:

http://www.biomedcentral.com/imedia/1855199272201208_comment.pdf


That's the only peer review available, and it doesn't really match up with the responses (or sound like a recommendation for the paper to be published).


http://www.biomedcentral.com/1471-2296/17/66/prepub

Got to agree with

There is also this review: http://www.biomedcentral.com/imedia/5544304912012088_comment.pdf

Yes I agree that the review from Muhammad Alotaibi is very weird.

 

[Esther12]

!

I thought I saw that second review yesterday, but today it was not there:

Oh well. It's back again now.

Strange that there was not more discussion about whether the conclusions drawn are adequately supported by the data shown imo. Seems like we're missing pieces of the review process.

 

[Dolphin]

I hear that the METRIC course on CFS on the Royal College of General Practitioners' website can now be accessed for free by people in the UK (a patient told me earlier):
http://www.rcgp.org.uk/learning/online-learning/ole/chronic-fatigue-syndrome-myalgic-encephalomyelitis.aspx

It would be interesting to know what it says.