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https://www.uea.ac.uk/documents/246046/11919343/LTCMUS Pathfinder Evaluation Phase 1.pdf/bccbe428-ba4d-44ff-b2f8-09cb43cdb62b
IAPT LTC/MUS Pathfinder Evaluation Project
Phase 1
Final report
University of Surrey
November 2013
(Revised April 2014)
University of Surrey Evaluation Team
All views expressed in this report are those of the Surrey Evaluation Team, not those of the Department of
Health.
Backgrounds to the evaluation
People with a diagnosis of a long-term condition (LTC) such as type 2 diabetes mellitus (T2DM), coronary
heart disease, asthma and chronic obstructive pulmonary disease, or who have medically unexplained
symptoms (MUS) are more frequent users of the health care system than those without these health
problems. The reduction of the use of unscheduled care in the NHS is a national priority. Recent health
policy initiatives aim to provide the same or better services through optimal use of resources. One of these
initiatives is the expansion of the Improving Access to Psychological Therapies (IAPT) programme to extend
the benefits of psychological therapies to a wider range of people including those with LTC and/or MUS.
In December 2011, an invitation was extended to providers of psychological therapies to apply to become
an IAPT LTC/MUS Pathfinder Site. Fifteen therapy teams were selected to become IAPT LTC/MUS
Pathfinders in February 2012. The Pathfinder teams were tasked with:
for the implementation of the pathfinder projects such as project planning, engagement of stakeholders,
recruitment and training of staff etc., many projects did not start until between August and October of
2012. In October 2012, the University of Surrey Evaluation Team was commissioned to conduct an
independent evaluation of the implementation of Phase 1 of the programme, which included an evaluation
of the clinical and economic outcomes of the programme using data routinely collected as part of clinical
practice, a qualitative enquiry into models of intervention and workforce development, and a patient
experience survey etc
(...)
Page 10
‘Medically-unexplained symptoms’ is a broad category of syndromes and symptoms that have no current
known physical pathological cause, including fibromyalgia, irritable bowel syndrome and chronic fatigue
syndrome (IAPT 2008; 2013). People with MUS make heavy demand on healthcare, often using multiple
services without a satisfactory outcome. There is likely to be much overlap of people with LTC and MUS.
Tyrer and colleagues (2011) found health anxiety in an average of 19.8% of patients at cardiology,
respiratory, neurology, endocrine and gastro-intestinal clinics in general hospitals. However, developing an
appropriate treatment model for MUS is difficult, due to controversy about the validity of diagnosis and
treatment. A survey by Hossenbaccus and White (2013) showed that 89% of patients’ organisations believe
that chronic fatigue syndrome has a physical basis, compared to only 24% of medical authorities. Qualitative research has emphasised that people with MUS resist psychological framing of their problems
(Chew-Graham et al, 2011). To improve engagement of people with MUS, psychological practitioners
should pursue a shared understanding with the patient. Deary, Chalder and Sharpe (2007) urged a shift
from a purely psychological to a complex, multifactorial model that can explain the generation and
maintenance of physical symptoms in the absence of a pathological cause.
Although prognosis in MUS conditions is poor, systematic reviews have shown clinically significant effect
sizes for CBT (Deary et al, 2007). Randomised controlled trials have demonstrated efficacy of CBT in chronic
fatigue (Chalder et al, 1997) and irritable bowel syndrome (Moss-Morris et al, 2010). The PACE trial (White
et al, 2011) evaluated pacing, graded exercise therapy, CBT and specialist medical care for CFS. A modest
effect size was found for all interventions, with CBT being most effective, although two-thirds of patients
did not derive any benefit from the trial. Schröder and colleagues (2012), who formulated a unitary
diagnosis of bodily distress syndrome, conducted a randomised trial of their CBT-based model of treatment
for this condition, with better outcomes compared to a control group receiving usual care. The CHAMP trial
(Tyrer et al, 2013) tested a CBT group intervention for health anxiety, based on the Salkovskis-Warwick
model (1986), versus usual care. A total of 444 patients were recruited from cardiology, gastro-intestinal,
endocrine and respiratory clinics in five general hospitals. The results suggested that this form of CBT for
health anxiety led to a sustained symptomatic benefit over 2 years, with no significant effect on total costs.
Alongside conventional CBT, there are other embellishments to the IAPT therapeutic repertoire of potential
benefit to people with LTC and MUS. Originating in Buddhist meditative practice, mindfulness was adapted
as a structured therapy by Jon Kabat-Zinn (1982) at the University of Massachusetts Medical Center.
Observing that many patients with chronic symptoms were neglected by the medical system, Kabat-Zinn
developed a course of mindfulness-based stress reduction (MBSR), which has proved effective in a wide
range of conditions (Grossman et al, 2004). Other cognitive and behavioural methods include mindfulnessbased
cognitive therapy (MBCT; Teasdale et al, 2002), acceptance and commitment therapy (ACT; Hayes et
al, 1999) behavioural activation therapy (Jacobson et al, 2001), and compassionate mind training (Gilbert,
2005). For conditions such as CFS, psychological interventions may be supplemented by graded exercise
therapy, which entails brief stretching exercises followed by periods of rest. Pacing is a daily regime to
manage energy and reduce susceptibility to fatigue, thus boosting self-control and confidence. Empirical
testing of such interventions in LTC and MUS remains at an early stage of development.
Table 3.1: IAPT stepped-care model
A major element of the Pathfinder evaluation was to develop evidence for the organisation, training and
supervision of the workforce. When the IAPT programme began in 2007, there was a shortage of CBT
therapists. A pragmatic decision was made to provide CBT-based interventions at two levels. Hundreds of
low-intensity workers, later renamed ‘psychological wellbeing practitioners’ (PWP), were deployed for
manualised psycho-education and guided self-help interventions. PWPs receive around 25 days of IAPT
training during their first year. High-intensity workers normally have a professional qualification and receive
two days of CBT-based training per week during their first year. As working with patients with LTC and MUS
is likely to be particularly challenging, the evaluation examined the needs and provision for specific training
and supervision.
(...)
Page 15 3.4.2 Interventions
The diversity of projects included innovative adaptations of standard IAPT interventions for anxiety and
depression (see Table 3.2). In all but two Pathfinders therapeutic interventions were delivered directly by
IAPT workers. While an aim of Phase 1 was to develop stepped-care pathways, there was a focus on Step 2,
which mostly entailed groups facilitated by PWPs. Manuals and protocols were produced for structured
low-intensity work, either newly designed or as modifications of existing CBT manuals.
Some Pathfinders interventions were disease-specific, but others took a generic approach to LTCs, partly
due to resource constraints, but also because similar therapeutic principles apply. In Bexley & Southwark
PWPs followed detailed protocols in facilitating groups for people with T2DM, COPD, irritable bowel
syndrome and chronic fatigue. Berkshire West Pathfinder conducted a randomised trial of a standard and
T2DM-specific wellbeing course, with groups running simultaneously for six sessions. In East London the
CBT-based Taking Charge programme for patients with LTCs comprised eight two-hour sessions over a
period of two months.
‘The focus is not on the condition but on the interface of the mood and the condition, so we’re
focusing on coping; how poor coping affects all sorts of domains: mood, sleep, capacity to cope with
pain, ability to manage social and family relationships, and the impact of the long-term condition on
people’s hopes and dreams for the future and how the adjustment process has been for them in
coming to terms with this thing called heart disease or diabetes.’
(...)
Page 17
(...)
Pathfinder workers could trawl GP lists to pursue patients with fibromyalgia, IBS and chronic fatigue, and
this active case-finding was more successful. For the Berkshire West T2DM trial, successful recruitment was
achieved by sending letters to all T2DM patients on GP lists, inviting them to telephone assessment for a
wellbeing course.
‘What seemed to work was getting support from GPs, agreeing that we could send out this letter to
all type 2 diabetes patients, so 600-800. It seemed to be just a matter of numbers; we were getting
up to 6% response rate. We didn’t have a problem once we got that process up and running. Going
to nurses, going to meetings with Diabetes UK, advertising that way – all seemed positive, but we
weren’t going to get the numbers that we did get with the letters going directly from the GP
surgery.’
(...)
Page 18
However, as explained by Buckinghamshire project leaders, while anxiety may be factor in breathlessness, it is not the only target for intervention. Therefore, a mental health focus was avoided not only due to negative connotations, but because the aim of treatment was broader. The term ‘medically unexplained symptoms’ was disliked by patients, due to an implication that symptoms are not genuine; among other terms used were ‘persistent physical symptoms’ (Camden & Islington) and ‘illness distress’ (Haringey, Enfield & Barnet).
(...)
Page 19
As a component of some Pathfinder projects, training was provided for GPs and physical health clinicians.
The projects began during organisational upheaval in primary care, as general practices were preparing for
the clinical commissioning groups introduced by the Health & Social Care Act 2012. Only twelve from over
30 general practices approached by Devon Pathfinder responded to the offer of training for practitioners in
detecting and referring people with MUS. In Berkshire twenty GPs were trained in managing MUS in
primary care by Per Fink ; in Sheffield two-hour training workshops on managing MUS were run for GPs and
other primary care staff; the Bexley & Southwark project included training for a 10-minute CBT intervention
to help GPs and physical health practitioners to think psychologically about a patient’s issues during
consultation. In Durham & Darlington practice nurses were trained to integrate a psychological theme in
their ongoing work with patients; after initial doubts, they found that this training enabled a more holistic
approach.
(...)
Page 21
MUS patients were seen as highly sensitive to professional scepticism about
the physical basis of their symptoms and psychiatric labelling. Many project leaders asserted that while
stress and mood disorder may be clearly evident in LTC and MUS, therapeutic engagement should relate to
broader functioning and wellbeing. For a CBT model to work, it must be acceptable to patients. According
to project leaders, patients with LTC or MUS tended to appreciate reformulation of their problems in a
cognitive behaviour model. Although it has highly-skilled application for complex problems, CBT may be
presented as strikingly simple: understanding its purpose and process requires little emotional literacy or
intellectual insight. Irrespective of the pathology of symptoms, if the behavioural response is dysfunctional,
this can be changed for the better. However, focusing on practical management of symptoms could have
unintended consequences of encouraging dualism and validating somatisation, which could perpetuate
stigma towards mental health problems. Self-referral is promoted in IAPT, but while empowerment is
desirable for people with LTC and MUS, clinical expertise may be necessary in defining a patient’s problem,
due to limited insight, denial, somatisation or avoidance. A proactive approach may be necessary for
people who lack awareness of the treatable psychological aspect to their condition.
(...)
Page 25
(...)
Some pathfinders were unable to provide us with the specific LTC/MUS that the patients had, although
their data did indicate that the patient had at least one condition. For this situation, the evaluation team
created a new category entitled “Unknown”, where it was known that the patient had an LTC/MUS
condition, but it was not clear which condition it was. At the end of the process, every patient had at least
one condition code etc
Full report:
https://www.uea.ac.uk/documents/246046/11919343/LTCMUS Pathfinder Evaluation Phase 1.pdf/bccbe428-ba4d-44ff-b2f8-09cb43cdb62b
There are 61 pages in all.
IAPT LTC/MUS Pathfinder Evaluation Project
Phase 1
Final report
University of Surrey
November 2013
(Revised April 2014)
University of Surrey Evaluation Team
All views expressed in this report are those of the Surrey Evaluation Team, not those of the Department of
Health.
Backgrounds to the evaluation
People with a diagnosis of a long-term condition (LTC) such as type 2 diabetes mellitus (T2DM), coronary
heart disease, asthma and chronic obstructive pulmonary disease, or who have medically unexplained
symptoms (MUS) are more frequent users of the health care system than those without these health
problems. The reduction of the use of unscheduled care in the NHS is a national priority. Recent health
policy initiatives aim to provide the same or better services through optimal use of resources. One of these
initiatives is the expansion of the Improving Access to Psychological Therapies (IAPT) programme to extend
the benefits of psychological therapies to a wider range of people including those with LTC and/or MUS.
In December 2011, an invitation was extended to providers of psychological therapies to apply to become
an IAPT LTC/MUS Pathfinder Site. Fifteen therapy teams were selected to become IAPT LTC/MUS
Pathfinders in February 2012. The Pathfinder teams were tasked with:
- Identifying a potential optimal stepped care pathway for people with LTC/MUS.
- Identifying the core therapy competencies, experience and training required to deliver talking therapies to people presenting with LTC/MUS, and anxiety or depression.
- Identifying potential improvement in economic factors and health utilisation across primary and secondary car
- Identifying potential clinical effectiveness and improvement in condition and status, by providing talking therapies to people presenting with LTC/MUS.
for the implementation of the pathfinder projects such as project planning, engagement of stakeholders,
recruitment and training of staff etc., many projects did not start until between August and October of
2012. In October 2012, the University of Surrey Evaluation Team was commissioned to conduct an
independent evaluation of the implementation of Phase 1 of the programme, which included an evaluation
of the clinical and economic outcomes of the programme using data routinely collected as part of clinical
practice, a qualitative enquiry into models of intervention and workforce development, and a patient
experience survey etc
(...)
Page 10
‘Medically-unexplained symptoms’ is a broad category of syndromes and symptoms that have no current
known physical pathological cause, including fibromyalgia, irritable bowel syndrome and chronic fatigue
syndrome (IAPT 2008; 2013). People with MUS make heavy demand on healthcare, often using multiple
services without a satisfactory outcome. There is likely to be much overlap of people with LTC and MUS.
Tyrer and colleagues (2011) found health anxiety in an average of 19.8% of patients at cardiology,
respiratory, neurology, endocrine and gastro-intestinal clinics in general hospitals. However, developing an
appropriate treatment model for MUS is difficult, due to controversy about the validity of diagnosis and
treatment. A survey by Hossenbaccus and White (2013) showed that 89% of patients’ organisations believe
that chronic fatigue syndrome has a physical basis, compared to only 24% of medical authorities. Qualitative research has emphasised that people with MUS resist psychological framing of their problems
(Chew-Graham et al, 2011). To improve engagement of people with MUS, psychological practitioners
should pursue a shared understanding with the patient. Deary, Chalder and Sharpe (2007) urged a shift
from a purely psychological to a complex, multifactorial model that can explain the generation and
maintenance of physical symptoms in the absence of a pathological cause.
Although prognosis in MUS conditions is poor, systematic reviews have shown clinically significant effect
sizes for CBT (Deary et al, 2007). Randomised controlled trials have demonstrated efficacy of CBT in chronic
fatigue (Chalder et al, 1997) and irritable bowel syndrome (Moss-Morris et al, 2010). The PACE trial (White
et al, 2011) evaluated pacing, graded exercise therapy, CBT and specialist medical care for CFS. A modest
effect size was found for all interventions, with CBT being most effective, although two-thirds of patients
did not derive any benefit from the trial. Schröder and colleagues (2012), who formulated a unitary
diagnosis of bodily distress syndrome, conducted a randomised trial of their CBT-based model of treatment
for this condition, with better outcomes compared to a control group receiving usual care. The CHAMP trial
(Tyrer et al, 2013) tested a CBT group intervention for health anxiety, based on the Salkovskis-Warwick
model (1986), versus usual care. A total of 444 patients were recruited from cardiology, gastro-intestinal,
endocrine and respiratory clinics in five general hospitals. The results suggested that this form of CBT for
health anxiety led to a sustained symptomatic benefit over 2 years, with no significant effect on total costs.
Alongside conventional CBT, there are other embellishments to the IAPT therapeutic repertoire of potential
benefit to people with LTC and MUS. Originating in Buddhist meditative practice, mindfulness was adapted
as a structured therapy by Jon Kabat-Zinn (1982) at the University of Massachusetts Medical Center.
Observing that many patients with chronic symptoms were neglected by the medical system, Kabat-Zinn
developed a course of mindfulness-based stress reduction (MBSR), which has proved effective in a wide
range of conditions (Grossman et al, 2004). Other cognitive and behavioural methods include mindfulnessbased
cognitive therapy (MBCT; Teasdale et al, 2002), acceptance and commitment therapy (ACT; Hayes et
al, 1999) behavioural activation therapy (Jacobson et al, 2001), and compassionate mind training (Gilbert,
2005). For conditions such as CFS, psychological interventions may be supplemented by graded exercise
therapy, which entails brief stretching exercises followed by periods of rest. Pacing is a daily regime to
manage energy and reduce susceptibility to fatigue, thus boosting self-control and confidence. Empirical
testing of such interventions in LTC and MUS remains at an early stage of development.
Table 3.1: IAPT stepped-care model
A major element of the Pathfinder evaluation was to develop evidence for the organisation, training and
supervision of the workforce. When the IAPT programme began in 2007, there was a shortage of CBT
therapists. A pragmatic decision was made to provide CBT-based interventions at two levels. Hundreds of
low-intensity workers, later renamed ‘psychological wellbeing practitioners’ (PWP), were deployed for
manualised psycho-education and guided self-help interventions. PWPs receive around 25 days of IAPT
training during their first year. High-intensity workers normally have a professional qualification and receive
two days of CBT-based training per week during their first year. As working with patients with LTC and MUS
is likely to be particularly challenging, the evaluation examined the needs and provision for specific training
and supervision.
(...)
Page 15 3.4.2 Interventions
The diversity of projects included innovative adaptations of standard IAPT interventions for anxiety and
depression (see Table 3.2). In all but two Pathfinders therapeutic interventions were delivered directly by
IAPT workers. While an aim of Phase 1 was to develop stepped-care pathways, there was a focus on Step 2,
which mostly entailed groups facilitated by PWPs. Manuals and protocols were produced for structured
low-intensity work, either newly designed or as modifications of existing CBT manuals.
Some Pathfinders interventions were disease-specific, but others took a generic approach to LTCs, partly
due to resource constraints, but also because similar therapeutic principles apply. In Bexley & Southwark
PWPs followed detailed protocols in facilitating groups for people with T2DM, COPD, irritable bowel
syndrome and chronic fatigue. Berkshire West Pathfinder conducted a randomised trial of a standard and
T2DM-specific wellbeing course, with groups running simultaneously for six sessions. In East London the
CBT-based Taking Charge programme for patients with LTCs comprised eight two-hour sessions over a
period of two months.
‘The focus is not on the condition but on the interface of the mood and the condition, so we’re
focusing on coping; how poor coping affects all sorts of domains: mood, sleep, capacity to cope with
pain, ability to manage social and family relationships, and the impact of the long-term condition on
people’s hopes and dreams for the future and how the adjustment process has been for them in
coming to terms with this thing called heart disease or diabetes.’
Page 17
(...)
Pathfinder workers could trawl GP lists to pursue patients with fibromyalgia, IBS and chronic fatigue, and
this active case-finding was more successful. For the Berkshire West T2DM trial, successful recruitment was
achieved by sending letters to all T2DM patients on GP lists, inviting them to telephone assessment for a
wellbeing course.
‘What seemed to work was getting support from GPs, agreeing that we could send out this letter to
all type 2 diabetes patients, so 600-800. It seemed to be just a matter of numbers; we were getting
up to 6% response rate. We didn’t have a problem once we got that process up and running. Going
to nurses, going to meetings with Diabetes UK, advertising that way – all seemed positive, but we
weren’t going to get the numbers that we did get with the letters going directly from the GP
surgery.’
(...)
Page 18
However, as explained by Buckinghamshire project leaders, while anxiety may be factor in breathlessness, it is not the only target for intervention. Therefore, a mental health focus was avoided not only due to negative connotations, but because the aim of treatment was broader. The term ‘medically unexplained symptoms’ was disliked by patients, due to an implication that symptoms are not genuine; among other terms used were ‘persistent physical symptoms’ (Camden & Islington) and ‘illness distress’ (Haringey, Enfield & Barnet).
(...)
Page 19
As a component of some Pathfinder projects, training was provided for GPs and physical health clinicians.
The projects began during organisational upheaval in primary care, as general practices were preparing for
the clinical commissioning groups introduced by the Health & Social Care Act 2012. Only twelve from over
30 general practices approached by Devon Pathfinder responded to the offer of training for practitioners in
detecting and referring people with MUS. In Berkshire twenty GPs were trained in managing MUS in
primary care by Per Fink ; in Sheffield two-hour training workshops on managing MUS were run for GPs and
other primary care staff; the Bexley & Southwark project included training for a 10-minute CBT intervention
to help GPs and physical health practitioners to think psychologically about a patient’s issues during
consultation. In Durham & Darlington practice nurses were trained to integrate a psychological theme in
their ongoing work with patients; after initial doubts, they found that this training enabled a more holistic
approach.
(...)
Page 21
MUS patients were seen as highly sensitive to professional scepticism about
the physical basis of their symptoms and psychiatric labelling. Many project leaders asserted that while
stress and mood disorder may be clearly evident in LTC and MUS, therapeutic engagement should relate to
broader functioning and wellbeing. For a CBT model to work, it must be acceptable to patients. According
to project leaders, patients with LTC or MUS tended to appreciate reformulation of their problems in a
cognitive behaviour model. Although it has highly-skilled application for complex problems, CBT may be
presented as strikingly simple: understanding its purpose and process requires little emotional literacy or
intellectual insight. Irrespective of the pathology of symptoms, if the behavioural response is dysfunctional,
this can be changed for the better. However, focusing on practical management of symptoms could have
unintended consequences of encouraging dualism and validating somatisation, which could perpetuate
stigma towards mental health problems. Self-referral is promoted in IAPT, but while empowerment is
desirable for people with LTC and MUS, clinical expertise may be necessary in defining a patient’s problem,
due to limited insight, denial, somatisation or avoidance. A proactive approach may be necessary for
people who lack awareness of the treatable psychological aspect to their condition.
(...)
Page 25
(...)
Some pathfinders were unable to provide us with the specific LTC/MUS that the patients had, although
their data did indicate that the patient had at least one condition. For this situation, the evaluation team
created a new category entitled “Unknown”, where it was known that the patient had an LTC/MUS
condition, but it was not clear which condition it was. At the end of the process, every patient had at least
one condition code etc
Full report:
https://www.uea.ac.uk/documents/246046/11919343/LTCMUS Pathfinder Evaluation Phase 1.pdf/bccbe428-ba4d-44ff-b2f8-09cb43cdb62b
There are 61 pages in all.
