Patients with medically unexplained physical symptoms experience of receiving treatment in a primary

[Dolphin]

six participants with chronic pain, two with CFS, three with fibromyalgia

Patients with medically unexplained physical symptoms experience of receiving treatment in a primary-care psychological therapies service: a qualitative study

The Cognitive Behaviour Therapist(2015), vol. 8, e12, page 1 of 17
doi:10.1017/S1352465815000235
ORIGINAL RESEARCH

Chloe Gerskowitch1∗
Ian Norman 2
and Katharine A. Rimes 3

1 King’s College London and South London and Maudsley NHS Trust, London, UK
2 King’s College London, Florence Nightingale School of Nursing & Midwifery, London, UK
3 King’s College London, Institute of Psychiatry, Psychology and Neuroscience, London, UK

Received 16 October 2014; Accepted 9 May 2015

Abstract

As a pilot site under the primary-care Increasing Access to Psychological Therapies (IAPT) Long Term Condition/Medically Unexplained Physical Symptoms (MUPS) project, patients with MUPS were offered cognitive behaviour therapy (CBT)-based treatments or attendance at a mindfulness-based stress reduction (MBSR) programme.

This study aimed to gain an understanding of the views and experiences of MUPS patients that received CBT-based therapy or MBSR within an IAPT service and to investigate the relationship between their experiences and health outcomes measured on self-report questionnaires.

Thematic analysis was used to analyse data gathered via semi-structured interviews with 11 patients.

Data collected from three selfreport measures were considered in relation to key features of participants’ reported experiences and patterns identified.

Four main themes emerged: (1) something needs to change; (2) making connections between physical symptoms and mood, thoughts or activities; (3) sharing experiences and feeling understood; and (4) reflections on treatment experience.

Participants generally reported a positive experience of treatment and felt better able to cope with their symptoms, although treatment did not necessarily result in reliable change in symptoms as measured by the Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder Scale (GAD-7) and Work and Social Adjustment Scale (WSAS).

This novel model of treatment appears to be acceptable for this patient group although evaluation of the pilot should consider the ability of routinely used measures to capture the value of treatment to patients, including improved coping with symptoms.

Key words:
CBT, primary care, MBSR, medically unexplained physical symptoms (MUPS), qualitative

 

[Dolphin]

Treatments examined

As part of this pilot, patients with MUPS in Southwark were offered, using a stepped-care model, low-intensity guided self-help (GSH), participation in a mindfulness-based stress reduction (MBSR) group or 1:1 high-intensity cognitive behavioural therapy (HI-CBT).

Participants had received a range of treatments at the service; three had received MBSR, three GSH only, two HI-CBT only and the remaining three more than one of the interventions. The median number of sessions attended was 17 (range 4–25).

The results were pretty poor but they have been buried somewhat:

There was a mix in terms of reported changes in physical and psychological symptoms, with all participants reporting either some improvement or no change in symptoms of anxiety or depression, but only four participants reported improvement in physical symptoms with seven reporting a worsening in physical symptoms.

They used various questionnaires

Each participant had completed self-report measures as part of therapy. These measures comprised the Patient Health Questionnaire (PHQ-9; Kroenkeet al.2001), a measure of depression severity, the Generalized Anxiety Disorder Scale (GAD-7; Spitzeret al.2006), a tool which facilitates screening for GAD and assessment of its severity, and the Work and Social Adjustment Scale (WSAS; Mundtet al.2002) which measures impairment in functioning across a number of domains.

but generally bury results in the text. There are no statistical tests done nor means or medians given for before and after.

 

[Dolphin]

(Not that exciting)

Based on 2008/2009 prices, it is estimated that the costs of consultations and care of people with physical problems that are caused by psychological distress in the UK are £3 billion per year (DoH,2011a)

The preceeding paragraph was about medically unexplained symptoms and focused on CFS, IBS and Fibromyalgia so the impression is that's the sort of thing that in mind with this statement.

 

[Dolphin]

I didn't know about the underlined bit:

Improving Access to Psychological Therapies (IAPT) is an NHS programme rolling out services in England, initially offering interventions, using a stepped care model, approved by the National Institute for Clinical Excellence (NICE) for people with depression and anxiety disorders. One of the priorities identified by the ‘Talking Therapies: A Four-Year Plan of Action’ document which accompanied the 2011 Government Publication of ‘No Health Without Mental Health’, was the expansion of the IAPT programme to include people with MUPS. A number of pilot sites were identified (including Southwark/Bexley) and the project rolled out in April 2012. As part of this pilot, patients with MUPS in Southwark were offered, using a stepped-care model, low-intensity guided self-help (GSH), participation in a mindfulness-based stress reduction (MBSR) group or 1:1 high-intensity cognitive behavioural therapy (HI-CBT).

 

[Dolphin]

Not the ideal situation for such research as the interviewer was a CBT therapist herself:

The interviewer (C.G.) was mindful that as a CBT clinician with experience of delivering these interventions, researcher expectations could influence and bias data collection, analysis and study findings. To minimize this, a ‘bracketing interview’ (Thomas & Pollo, 2002)was undertaken to elicit the interviewer’s expectations, the first transcript was analysed for leading questions and training provided by the other researchers (K.R. and I.J.N.) to ensure even questioning and prompts to unearth evidence contrary to expectations were used in subsequent interviews.

 

[Dolphin]

Frustrating journey

Patients described having experienced a frustrating process of assessment prior to referral to IAPT and an on-going search for answers regarding their symptoms, which often led to frustration and despondency.

What I am down about if I am to be totally honest is the fact that they are not getting to the bottom of what’s wrong. (11)

I would say: they're not going to find that out on such a course.

 

[Dolphin]

Willing to try anything

Participants shared a sense of desperation and a willingness to try anything to improve their health. One participant described it as follows:

I was in a hole just getting deeper and deeper . . . I knew something had to change but I didn’t know what . . . I’d tried everything. (5)

Shows they are vulnerable.

 

[Dolphin]

Looking for answers For some participants the search for answers continued as patients reported hoping to gain specialist knowledge and information regarding their condition from the service.

I was mainly looking for answers . . . to see someone who knew what they were talking about. (1)

Shows they could be misled by somebody who is seen as an expert.

 

[Dolphin]

Choice and information

Most participants reported having received very little information regarding our service from their referrer. One participant reported that she did not believe that her GP even realized it was a psychological therapy service. As a result, when these patients came to the service and learnt its remit, they were a little taken-aback.

That was really hard . . . I couldn’t see the point in doing something therapy-based when I wanted a solution for the fact my body really hurt. (1)[/QUOTE]

Thought this was interesting in terms of how patients end up getting such therapies.

 

[Dolphin]

One fibromyalgia patient explained that the MBSR course had not been helpful because of the practical limits and consequences of her condition.

The idea of it is great but it didn’t work for me unfortunately . . . you’re sitting there for half an hour . . . relaxing different parts of your body. And that’s very hard to do when you are in a lot of pain, because I can’t sit still for long. (10)

 

[Dolphin]

Validation

Participants reported feeling understood and validated by their therapist as a result of the knowledge the therapist held about their condition.

So just meeting someone that had some knowledge, knew there was something funny going on with pain signals, which isn’t just someone who is a bit depressed . . . that helped. (2)

Feeling understood by other group members with similar problems helped validate participants’ experiences.

I wonder would they have felt as validated if they had known the therapists real views about their condition.

 

[Dolphin]

As mentioned above, the quantitative data is presented in a very unsatisfactory way.

Key findings from quantitative data

For the majority of participants, therapy did not result in clinical improvement in terms of depression, anxiety or day-to-day functioning levels, as measured by reliable change in PHQ-9, GAD-7 and WSAS. Of the 11 participants, three participants met criteria for reliable improvement in PHQ-9 score, one for reliable improvement in GAD-7 score and none for reliable improvement in WSAS score.

 

[SOC]

Participants generally reported a positive experience of treatment and felt better able to cope with their symptoms, although treatment did not necessarily result in reliable change in symptoms as measured by the Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder Scale (GAD-7) and Work and Social Adjustment Scale (WSAS).

Reminds me of an old saying: The operation was a success, but the patient died.

Beautiful example of CYA denial of reality in the medical (in this case psychiatric) world.

 

[Sean]

Participants generally reported a positive experience of treatment and felt better able to cope with their symptoms, although treatment did not necessarily result in reliable change in symptoms...

Complicated way of saying it didn't work.

 

[worldbackwards]

But never forget, it's the ME community that harms patients.

I blame PR.

 

[Simon]

Thanks for doing the hard work, @Dolphin

The results were pretty poor but they have been buried somewhat:4

There was a mix in terms of reported changes in physical and psychological symptoms, with all participants reporting either some improvement or no change in symptoms of anxiety or depression, but only four participants reported improvement in physical symptoms with seven reporting a worsening in physical symptoms.

"What I am down about if I am to be totally honest is the fact that they are not getting to the bottom of what’s wrong. (11)"
Fair point.

Also they didn't have a no-treatment control group. But more people reporting worsening than improving does suggest they need a different approach. So presumably they'll rip it up and start again?

 

[alex3619]

This is pretty much what we suspect about the PACE trial. Not much improvement, some harm, but some patients report they feel better about things.

 

[Bob]

So presumably they'll rip it up and start again??

I was thinking exactly the same! Very likely, I'm sure! (But I don't think I'll put any money on it!)

But to give them their credit where it's due, the authors have been fairly honest in the abstract: "Participants generally reported a positive experience of treatment and felt better able to cope with their symptoms, although treatment did not necessarily result in reliable change in symptoms..."

If the PACE authors spoke in that language (i.e. that patients "felt better able to cope with their symptoms") and were that honest (i.e. "treatment did not necessarily result in reliable change in symptoms"), then I wouldn't have much of a problem with them.

Or am I giving too much credit to these authors?

 

[Dolphin]

Thanks for doing the hard work, @Dolphin

The results were pretty poor but they have been buried somewhat:4

There was a mix in terms of reported changes in physical and psychological symptoms, with all participants reporting either some improvement or no change in symptoms of anxiety or depression, but only four participants reported improvement in physical symptoms with seven reporting a worsening in physical symptoms.

"What I am down about if I am to be totally honest is the fact that they are not getting to the bottom of what’s wrong. (11)"
Fair point.

Also they didn't have a no-treatment control group. But more people reporting worsening than improving does suggest they need a different approach. So presumably they'll rip it up and start again??

You won't be surprised to hear that that wasn't their conclusion.

 

[SilverbladeTE]

We are much better off playing relaxing computer games, cuddling/playing with our pets, listening to uplifting music than all this idiot SH*T!
Had to deal with pain and fear all my life, it's important for people to "flow" naturally into things that revive the spirit, that aren't stressful but uplift. Psychological melancholia can happen to anyone, we've all got limits and variations in what we can and cannot take.
Lot of "survivors" have already figured such stuff out without the need for a psychologist
alas a great many others have not, and "self medicate" using alcohol, other drugs, violence, self harm or self destruction.

We live in societies that have been deliberately turned in on themselves, to promote selfish hate war, violence, inhumanity, greedy etc, this has greatly worsened things
living in poverty, slums etc has hellish effects, but so does a desolation of the soul.
Crazy at it may seems, to me, the way CBT etc has been pushed is more utter perversion and destruction of Humanity, on all sides
not listening to patients, warping potentially useful services to fill a DEMAND for control
denigration into uber/untermensch

and a push from the top to deny acceptance of the COLOSSAL damage to Human health our mad world has become
ever seen "DUNE"?
Earth = Giddi Prime, we've taken everything to extremes, polluted hell out of it, and our selves and denied the "spiritual" (and I don't mean that in the simple, crass religious sense that it has been abused for centuries, but in far broader one).

So, of course we have gross physical and mental health problems running rampant in our messed up cultures.