PAIN 155 (2014) 349355

www.elsevier.com/locate/pain

How do people understand their neuropathic pain? A Q-study

Sally Martin a, Clare Daniel b, Amanda C de C Williams c,
a

Previously, Research Department of Clinical, Educational and Health Psychology, University College London, London, UK
Pain Management Centre and Facial Pain Service, National Hospital for Neurology and Neurosurgery, Queen Square, London, UK
c
Research Department of Clinical, Educational and Health Psychology, University College London, London, UK
b

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

a r t i c l e

i n f o

Article history:
Received 1 July 2013
Received in revised form 2 October 2013
Accepted 18 October 2013

Keywords:
Lay understanding
Nerve damage
Psychological treatment

a b s t r a c t
Neuropathic pain (NP) is not easy to understand for those with the diagnosis. Even in specialist medical
services, explanation may not be given or may not be integrated with patients existing beliefs about their
conditions. We were curious about how people with NP conceptualised the problem. Web sites relevant
to NP were used to recruit 79 people with NP. They were sampled using Q-methodology, which requires
sorting according to degree of agreement or disagreement with diverse statements about NP, derived
from the widest possible range of sources. The sets of sorted statements are analysed for factors which
represent shared constructions. The four factors that we found differed in important ways: (1) identication of nerve damage as cause; (2) the necessity of identifying cause; (3) the acceptability of symptomatic treatment; (4) the existence or not of psychological inuences; and (5) the usefulness of
psychological treatment. The meaning of these factors was extended by participants free comments: certain viewpoints showed associations with their medical and treatment histories and with the interference of pain with daily life. Overall, a biopsychosocial model of pain was only weakly represented, and
no integrated model of pain emerged across the four different accounts. There was little reference to
NP having been explained when the diagnosis was made. This study highlights the need for more accessible explanations of NP within and outside medical services if people with NP are to use their understanding of NP to help them manage their pain and reduce its impact on their lives.
2013 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

1. Introduction
Given the impact of chronic pain [8,22], it is important that people with pain have a satisfactory understanding of their pain, but
there is relatively little research in the area. The common-sense
model of understanding health problems [30] describes patients
behaviours in response to their symptoms in relation to their implicit or explicit models of their illness. Use or nonuse of health care is
one of those behaviours of interest. An alternative approach starts
with subjectivity and the construction of concepts of health and illness through language, by all in a culture, not only those in health
care [62]. For those receiving health care, their experiences contribute importantly to how they construct their problem [44]. In chronic
pain, patients and professionals understandings tend to differ
[21,38,46], and although patients concepts relate to medical explanations, they do not often adopt them and may be quite critical [62].

Corresponding author. Address: Research Department of Clinical, Educational

and Health Psychology, University College London, Gower St., London WC1E 6BT,
UK. Tel.: +44 2076791608; fax: +44 2079161989.
E-mail address: amanda.williams@ucl.ac.uk (A.C.de.C. Williams).
URL: http://www.ucl.ac.uk (A.C.de.C. Williams).

In particular, the psychological components of any model may be rejected by patients who see them as threats to the legitimacy of their
pain [29,40]. This means that they are not referred to, or do not take
up, psychologically based rehabilitation programmes for which
there is good evidence of efcacy [61]. By contrast, health care staffs
concerns about pain can provide important validation.
Neuropathic pain (NP), resulting from lesions in or disease of
the central or peripheral nervous system, affects 7% to 8% of the
population, increasing with age and chronic disease [8,55]. The impact of NP on quality of life can be substantial and greater than that
of other kinds of chronic pain [50]. NP is diagnosed on the basis of
positive and negative symptom patterns and descriptions [2], and
there are several well-established scales to help with diagnosis
[3,27], but it appears to be difcult to diagnose in primary care
[51], and underdiagnosis is common [25,55]. This, in turn, leads
to under-referral to specialist services, where mechanisms of NP
are better recognised, often associated with specic diagnoses
and to a certain extent with treatment [2].
It can be hard for patients to describe and understand NP and
associated symptoms, particularly when they are not identied
by medical personnel. Without explanation, pain is frequently
misinterpreted as harm, prompting protective strategies that

0304-3959/$36.00 2013 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.
http://dx.doi.org/10.1016/j.pain.2013.10.021

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S. Martin et al. / PAIN 155 (2014) 349355

exacerbate disability [6]. Early explanations that make sense of

pain can mitigate its impact [37,41]. The aim of enabling people
with chronic pain to become effective in self-management may require more consistent investment in explaining pain. Pain that is a
mystery to the person with pain generates worry, which early in
the pain history may be functional [32], but in chronic pain is usually part of a closed cycle of pain, disability and distress [15,20].
It is therefore helpful to study lay understanding of NP. The current study uses Q-methodology, which is well suited to the study
of subjectivity because it generates a distribution of participants
subjective viewpoints, opinions and attitudes about a given subject
matter [10].

2. Methods
Ethical approval was given by the relevant university committee. The study recruited online, with permission from the relevant
Web site administrators, via 10 Web sites used by people with
neuropathic pain: for NP, for multiple chronic pain conditions,
and for HIV, multiple sclerosis and diabetes. The Web sites were
found using 4 search engines: Google, Yahoo UK & Ireland, MSN/
Bing, and Ask, in October 2011, using the terms neuropathic pain,
neuropathy, diabetes, HIV, shingles, chronic pain, persistent pain, forum, message board, and online support. An advertisement requesting volunteers with NP to share how they understood it, and
providing a hyperlink, was distributed to these Web sites.
Free software (Q-assessor Beta [43]) was used to create necessary Web pages and a programme for the Q-sorting to be carried
out online. The hyperlink posted on the Web sites led to the studys
Web pages, which explained the purpose, requested consent to
proceed, and then presented the Q sort study and instructions.
Recruitment of adult participants with NP aimed for a sample size
of at least 50 to achieve stability in the factor structures derived
from analysis [34]. Two comparisons of computer-based and paper
Q-sorts [45] found no difference in the reliability or validity between the methods.
2.1. Q-methodology
Q-methodology uses a factor analytic paradigm but with the
important difference that instead of using relationships among
item scores as raw data, the factor analysis correlates relationships
among statements within respondents [9]. Q-methodology is not,
however, concerned with the population but with subjectivity
and shared viewpoints within that population [47].
Statements provided to respondents were drawn from a concourse that aimed to represent as wide as possible a range of ways
in which neuropathic pain is understood [53]. The sampling method
is not important provided that the nal Q set can justiably claim to
be broadly representative of the relevant opinion domain ([59] p.
75); it can never claim to be comprehensive. The concourse consisted of (1) the content of discussion with 5 professionals (a clinical
psychologist working in chronic pain, 2 experienced medical pain
specialists, and 2 primary care doctors); (2) content from several
UK Web sites for people with NP (eg, www.patient.co.uk; www.brainandspine.org.uk); (3) social networking sites used by people with
NP (such as Facebook groups); (4) textbook chapters and research
papers on NP. We gathered 130 statements, satisfying the recommendation that 3 times the intended nal number of statements
be obtained [52]; after removing repetition, overly complex propositions and ambiguous statements, 45 items remained, adequate for
the recommended 40 to 80 statements for the nal Q-sort [59].
Q-methodology involves the presentation of these statements
(the Q-set) to a sample of participants (the P-set). In the rst phase
of the sorting process, participants arranged the statements from

those with which they strongly disagreed, through those about

which they felt neutral, to those with which they strongly agreed,
by clicking on the designated button. Participants could amend the
selection at any time. In the second phase, the participants were
presented with the statements that they had agreed with in phase
1, then those they had disagreed with, and then those they had
been uncertain about. Using a drag-and-drop procedure, they
sorted each statement into a quasinormal distribution on a grid
provided, putting 1 statement into each box. The horizontal grid
provided a distribution from strong disagreement to strong agreement, and the format was chosen after a pilot study showed a clear
preference (5 of 6 respondents) for more rather than fewer options
at the extremes. At the extremes were 5 boxes vertically: strongly
agree (+3) through strongly disagree (3); adjacent to each were 6
boxes vertically for agree and disagree; between these were 7
boxes vertically for possibly agree and possibly disagree; and, centrally, 9 boxes vertically for uncertain.
Additionally, several open-ended questions requested participants comments about the statements that they strongly agreed
or disagreed with or that stood out for some other reason. They
were also asked to list the treatments they had tried for their pain
and to state what might have triggered their pain. The open-ended
questions used an unstructured response format in which participants provided their responses in text boxes without word limits.
Lastly, participants were asked to provide their e-mail addresses
if they wished to check factor interpretation following analysis
[59].
After completing their sorts, the participants completed the
Brief Pain Inventory (BPI; Short Form [12]), which assesses pain
and pain interference in people with chronic pain [54]. Using a
010 numeric rating scale, from no pain to pain a bad as you
can imagine, this inventory asks respondents to rate their worst,
least and average pain over the past 24 hours and their current
pain; the severity score is the mean of these 4 items. Interference
is measured by 7 items with responses from 0, does not interfere,
to 10, completely interferes, providing an overall mean of interference. The items are general activity, mood, walking ability,
work, relationships with others, sleep, and enjoyment of life. In a
study of people with NP, the BPI was reported to have a Cronbach
alpha of 0.94 for both scales [64].
2.2. Data analysis
The distribution of participants subjective viewpoints [10]
were subjected to factor analysis. Signicant factors represent
shared viewpoints within the group [45] or clusters of subjectivity
[10,58]. The Q-assessor online programme (q-assessor.com), modelled on the PCQ Method programme [1], uses the centroid method
of factor analysis, rst grouping Q-sorts by similar item rankings
[10,59] and then producing distinct factors by varimax rotation.
Factors with an Eigenvalue greater than 1 and with at least 1 participant loading on it are assumed to be interpretable [53]. For a
factor loading to be signicant at the P < .01 level, the p
cutoff
was

given by 2.58 SE), where standard error (SE) was 1= N , and N

was the number of statements in the concourse [9]. For the current
study, with 45 statements, this formula identied factor loadings
>0.39 as signicant at P < .01.
Interpretation of factors, that is, of the statements and their
loadings within each factor, used the method recommended by
Watts and Stenner [59]. Q-assessor provided rank statement totals
for each factor, indicating ranking of statements within factors and
signicant differences among factors in ranking of particular statements, described as distinguishing statements, whose normalised
score differs from those of all other factors. Participants feedback
and other information (in this study, BPI scores and treatment histories of participants) enrich this interpretation [19].

S. Martin et al. / PAIN 155 (2014) 349355

3. Results
We received 84 Q-sorts, but 5 respondents did not complete the
additional questions, leaving 79 complete responses. The study
was downloaded 416 times, but it is not possible to tell how many
of these were repeated attempts. The minimum response rate is,
therefore, 20% but is likely to be somewhat higher. Of the 79 participants, 49 (62%) were male; 23% were between 50 and 80 years
of age; 38% were between 40 and 50 years of age; 28% were between 30 and 40 years of age; and 11% were younger than 30 years
of age.
Some items were effectively redundant: all respondents disagreed that NP could be caused by personality or attention seeking
or that diet affected pain level; all agreed that NP could be felt elsewhere than at the injury site and that sleep problems exacerbated
it.
3.1. Factor interpretation
Q-assessor analysed 79 Q-sorts and produced 4 factors with an
Eigenvalue >1 and clear exemplars (participants) loading on them.
There were 56 exemplars who loaded signicantly on 1 of 4 factors
and 23 who did not load on a single factor but on diverse combinations, with none of the combinations favoured over others. We
therefore considered all viewpoints in the 79 Q-sorts to be adequately represented by the factors below [19,59]. Factors were distinguished from one another by a focus on cause, on nerve damage
as cause, and on rejection or acceptance of psychological inuence
or treatment. Factors are described in order of decreasing number
of exemplars, showing item rankings in brackets: rankings of +3
and 3 represent strong agreement and strong disagreement,
respectively (Table 1).
3.1.1. Factor 1
NP is a nervous system problem; psychology inuences pain
experience and acceptance; NP is open to psychological treatments.
This viewpoint was endorsed by about one third of the group. It
had 2 related themes and many distinguishing statements (significant at P < 0.05) characteristic of factors which represent a substantial proportion of the sample. It identied NP as a physical
problem but accepted that psychological methods could help its
management (Appendix A). One theme concerned the multifactorial causes of NP and its maintenance, with a predominant model
of altered processing of pain signals by the nervous system. Psychological inuences on pain were admitted, but a psychosomatic
model was clearly rejected.
 3 Neuropathic pain signals that there is something seriously
wrong with the part of the body where the pain is felt.
 2 The most important treatments for neuropathic pain are
provided by doctors.
 +2 Neuropathic pain can be caused by changes in the spinal cord
and/or the brain.
 +2 Neuropathic pain can be made worse by stress, anxiety and
depression.
 2 Neuropathic pain is sometimes not pain but expression of
emotion.
The second theme described acceptance of pain (as opposed to
seeking a cure) and learning to live with pain as the goal, towards
which psychological methods could provide an additional (rather
than an alternative) resource.
 +3 Psychological therapy such as cognitive behavioural therapy
can change a persons experience of neuropathic pain such as
pain intensity.

351

 +3 It is important that people learn to live with neuropathic

pain.
 +3 More support is needed for people who are willing to
move away from focusing solely on medical treatment for
their pain.
 +2 People who cope better with neuropathic pain have accepted
the situation.
 3 Psychologists and psychological therapies are not useful for
people with neuropathic pain.
The open-ended comments showed that participants thought
that mood and stress affect pain, that accepting NP was helpful,
and that they endorsed or were open-minded about psychological
treatment:
I think psychological therapies have an important role to play in pain management and helping improve ones mood.
Self-help literature can provide more relief than medication at times!
How people behave and think affects their pain. I have completed a mindfulness course and this has helped a huge amount with controlling my reaction
to pain.

Six participants who loaded on factor 1 had used cognitive

behavioural treatment for pain, whereas none of the participants
loading on the other factors listed this specically. Nine participants loading on factor 1 also made reference to having tried other
nonmedical treatments, such as yoga and meditation, and there
were several comments expressing dissatisfaction with medical
provision.
It is interesting that in neutral positions were statements concerning the direct inuence of psychological processes on pain. It
may be that acceptance of the place of psychology arose more from
trying treatments in open-minded ways or in the face of no further
biomedical options, rather than from subscribing to an integrated
biopsychosocial model of neuropathic pain. There were also comments seeking to distinguish these psychological models from psychosomatic accounts. With reference to the statement that if the
pain/illness/injury was not visible, then the pain must all be in
the patients head, one respondent wrote, Unfortunately this is
the outlook of a lot, if not the majority, of people that if they cannot see a visible wound then how can relatively normal-looking
legs cause a person so much pain with no exterior signs? Another
commented, It is really important to be reassured that it is not in
our heads. It is hard to accept that it cannot be cured, but it does
help if the doctors are honest.
Treatments tried in this group (24 of the 26 answered) were, in
descending order of numbers of patients using them, and in various combinations: anticonvulsants; opioids; antidepressants;
mainstream psychological treatments such as cognitive behavioural therapy; nonsteroidal anti-inammatory drugs (NSAIDs);
physiotherapy and other physical therapies; meditation/mindfulness or yoga; acupuncture; and one each for lidocaine patches,
nerve blocks and facet joint injections. Only 3 were using no drugs.
3.1.2. Factor 2
NP is nerve damage; psychology is irrelevant in pain experience; neutral about psychological treatments.
This factor was exemplied by 15 participants and had a single
coherent theme: that of a neurophysiological model of neuropathic
pain, with explicit rejection of psychological inuence of any sort.
Cause was important, and symptomatic treatment was strongly
rejected.
 +3 Neuropathic pain is caused by damaged nerves sending distorted signals to the brain.
 +3 Modern medicine cant identify all the causes of NP, so test
results can come back negative.

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S. Martin et al. / PAIN 155 (2014) 349355

 +3 Doctors need to treat the cause of NP, not the symptoms.

 +3 Neuropathic pain seems to have a will of its own.
 3 Areas in the brain that are responsible for neuropathic pain
are also connected to emotion. Therefore, neuropathic pain is in
part an emotional experience.
 3 Negative thoughts can increase neuropathic pain.
This factor is dominated by biomedical formulations of NP and
by nerve damage as the cause of NP; brain processes are described
in neurological but not psychological terms, with strong rejection
of an association with psychosocial processes, such as cognitions,
emotion and personality. This group was the only one to reject
strongly the statement that negative thoughts can increase neuropathic pain, making it a distinguishing statement (factors 1 and 4
scored this neutrally). Additional comments further repudiated
any place for psychological inuence:
I disagreed mostly with statements suggesting emotional causes. Thats just
nonsense. Assertion that neuropathic pain is psychological is a ridiculous
assumption and could lead to a medical professional determining that pain does
not exist when it does.

Despite the clear rejection of psychological processes in neuropathic pain, psychological treatment methods were not rejected
but ranked neutrally; none of the participants listed any formal
psychological interventions among the treatments tried, and most
treatments were by conventional medicine. In descending order of
numbers using them, and in various combinations: unspecied
analgesics, anticonvulsants, antidepressants, physiotherapy and
physical methods, opioids, and one each of NSAIDs, acupuncture,
botox, occipital nerve stimulation, and surgery.
3.1.3. Factor 3
NP is (irreparable) nerve damage, for which symptom management is needed; psychological inuences play a part in pain perception, but psychological treatments have no role.
Eleven participants loaded on this factor, which shared much of
the biomedical model endorsement of factor 2 but not its preoccupation with cause. Participants found symptomatic treatment
acceptable. Several had NP associated with incurable conditions
(cancer, HIV, multiple sclerosis), so symptomatic treatment was
their best option. There was more tolerance for psychological factors as contributors to the pain experience but not as a route for
intervention.
 +3 Neuropathic pain is caused by damaged nerves sending distorted signals to the brain.
 +2 Modern medicine cant identify all the causes of NP, so test
results can come back negative.
 +3 Neuropathic pain seems to have a will of its own.
 +2 Neuropathic pain can be made worse by stress, anxiety and
depression.
 3 Doctors need to treat the cause of neuropathic pain not the
symptoms.
 2 Accepting neuropathic pain can reduce distress.
Several comments emphasised the uncontrollability and
unpredictability of NP: Neuropathic pain seems to have a will
of its own stood out to me. There is often no specic event that
causes it to act up. Often it is in the middle of the night. And
Am I going mad? Is it all in my head? That question stood out
as thats how I feel most of the time. I dont think the cause
can be treated: its irreversible.
A few comments associated this characteristic with the acceptability of symptomatic treatment: The expectation that doctors
need to understand or x the cause is unrealistic at this
time. . .treating the symptoms is important. Treatments tried

were, in descending order of numbers using them, and in various

combinations, were: unspecied analgesics, antidepressants, anticonvulsants, opioids, physiotherapy, and 1 each of NSAIDs, topical
lidocaine, medical marijuana, vitamins, diet, and deep breathing
and positive thoughts.
3.1.4. Factor 4
NP (of recent onset) cause should be identied; psychological
inuences play a role; treatment may be medical and/or psychological. A distinct factor emerged from 4 participants Q-sorts,
resembling factor 2 in the focus on cause, yet neutral about statements endorsed in factor 2, which described neurophysiological
mechanisms. It was also neutral about symptomatic treatment
and accepting of psychological inuence and of psychological
treatment. These participants had pain for a notably shorter time
than those exemplifying the other 3 factors, caused by chemotherapy, HIV, surgery, and an unknown event.
 +3 It is essential for the cause of neuropathic pain to be found
to be able to treat it.
 +3 Because biological, psychological and social factors all inuence perception of neuropathic pain, treatment should therefore include psychosocial interventions as well as medical ones.
 +2 There is a clear relationship between underlying causes of
pain, the physical signs and the neuropathic pain that is felt.
 2 It is important that people learn to live with neuropathic
pain.
 3 Medication is the best way to manage symptoms of neuropathic pain.
Those scoring on this factor were relatively neutral about some
biological explanations, and there was some expression of disappointment or disillusionment with orthodox medicine in the free
text comments: Doctors have few tricks in their book to manage
the pain. This is perhaps surprising given the relatively short
duration of pain and therefore of attempts at treatment. Pain interference was scored higher than in the other 3 factors, suggesting a
group of people unable to nd a satisfactory way to live with the
pain; they were relatively neutral about the statements on adjustment and acceptance.
No treatment was mentioned by more than 1 respondent, except surgery by 2, but the following were used in various combinations and in addition to surgery: unspecied analgesics,
physiotherapy and physical methods, opioids, anticonvulsants,
meditation and yoga, and alternative methods.
3.2. Participants responses to the factors
An effort was made to engage the participants via e-mail to
check that their views had been accurately represented by the
interpretation of the factor on which they loaded. The 45 participants with e-mail addresses who loaded on any factor were sent
a summary of that factor. Of those, 13, including at least 1 representative of each factor, replied: all agreed with the interpretation
of their factor and stated that their views and attitudes about neuropathic pain had been accurately represented.
4. Discussion
We found that 4 main distinct accounts of neuropathic pain
emerged, summarised in terms of the key concepts shared or differing. We focus particularly on the psychological content, because
in contrast with the musculoskeletal literature, in which psychological models are becoming integrated in assessment and treatment, the NP literature recognises the distress experienced by

S. Martin et al. / PAIN 155 (2014) 349355

people with NP, but there is little work on how people understand
and attribute meaning to their pain.
Factor 2 (F2) represents the extreme of commitment to cause
that is expressed in biological-mechanical terms, with complete
rejection of psychological inuence, as if any admission of psychological inuence undermined the authenticity of NP [21,46]. Even
so, those represented by F2 were agnostic about the possible benets of psychologically-based treatments. F2 was the only factor to
be distinguished from others by its rejection of particular
statements.
Factor 1 (F1) was less concerned with cause, although the
nerve-damage model was clearly held. This is unsurprising, given
the respondents diagnoses (Table 1), but it is also common for
people with NP to be provided with explanations which emphasise
nerve damage [17]. An even clearer contrast between F1 and F2 lay
in the agreement with statements concerning the role of psychology in adjustment and in treatment. Nearly half of those represented by F1 had tried or were considering cognitive behavioural
therapy; none of those represented by other factors mentioned it.
Factor 3 (F3) and Factor 4 (F4) seemed to be in part determined
by particular features of NP. For F3, NP arose mainly from incurable
conditions, so that questions of cause were less important than
those of adjustment, inuenced by psychological factors, and of
symptom management by medical or psychological means,
whereas for F4, NP was of relatively recent onset and those represented by it were not yet satised with diagnostic attempts, so
questions of cause were paramount. This may have represented
not only hopes of resolving the cause, abolishing pain and restoring
health or, if not, of validating the complaint of pain and legitimating associated disability [46,47]. It may also reect the predominant focus on treatment of life-threatening disease at the
expense of pain, as noted in cancer [7], or possibly clarication
by health care staff that treatment options had been exhausted,
fostering disillusionment with medical interventions, which was
evident in some statements.
It is interesting that agreement with psychological inuence
was specic to adjustment, rather than to incorporating a more
integrated model of pain experience [56]. It was hard to nd any
sophisticated statements of such an integrated pain model in literature accessible to the public; instead, there were plenty of implicit
and explicit statements of a psychosomatic version of pain, however incompatible with the science of NP [5,14,31,63]. Patients
with chronic pain conditions are sensitive to constructions of pain
as being controllable, evoking a tendency to blame or hold responsible the affected individual [60], so they distance themselves from
psychosomatic attributions of pain [21], a common, albeit inaccurate, attribution when investigations are negative [49]. Across all
accounts, participants comments indicated that they had received
psychosomatic explanations of their pain and had been distressed
and offended, consistent with other studies which use open-ended
methods to sample patients experiences [11,21].
Limited access to evidence-based and accessible information
about neuropathic pain, except perhaps within pain clinics, means
that people with NP are often exposed only to biomedical models
[17] not written for the lay public [eg, [26,42,57]] and which make
little or no mention of descending pathways in the spinal cord and
brain. NP mechanisms are complex and only partly understood
[57], so it is unsurprising that clinicians struggle to convey an accurate and integrated model of NP comprehensible to the layperson.
Further, where there is a denitive diagnosis, such as diabetic neuropathy or cancer, it is easier to regard pain as an inevitable part of
that disease rather than to enquire further about how pain is generated [4]. It is, however, of some concern that the information
available to patients outside written material produced by clinics
is likely unwittingly to exacerbate suspicion of psychology in pain
rather than to correct these misapprehensions.

353

None of the 4 factors completely rejected the possibility of psychological treatment of pain or related problems, although free
text comments, in particular, suggested that trying them was more
in the spirit of trying anything or of disappointment with orthodox
treatment approaches than out of conviction that psychology was
of particular value. It is also possible that people with NP who
are hostile to psychologys involvement in pain treatment and
who saw the invitation might have decided not to respond to an
invitation from a psychologist. Only F1 endorsed the notion of
acceptance [33] or learning to live with pain. F3 and F4 strongly rejected the idea, citing the unpredictability of pain and its constant
interruption and interference [16,17,35]. (Note that we use participants language: acceptance was a term provided in statements
and which respondents understood in their own ways and used
in free text. We are not asserting that what they understood by it
is what Risdon and colleagues [47] and others have described.)
All respondents appeared to have consulted mainstream medical services, although we do not have details. The term doctor appears to stand for an oversimplied and somewhat demonised
clinician whose help is sought but who, for various reasons, often
disappoints and becomes a gure of blame [21,41]. Medications
of all types were listed by participants, except those in F4, who appeared to view medication use as impeding the search for the
cause of pain [47]. This is in sharp contrast with guidelines (eg,
[39]) which recommend neuroleptic and antidepressant drugs as
rst-line NP treatment, although limited by restricted efcacy
[24] and adverse effects [13]. There may also have been a selfselection process by which people obtaining good relief from NP
medication had little interest in taking part in the study and may
even have been less likely to participate in the patient forums
through which many were recruited.
4.1. Strengths and limitations
As described above, sampling could be neither representative
nor purposive and therefore cannot claim to describe the full range
of viewpoints concerning NP. However, it is likely that the factors
provide a snapshot of shared viewpoints and understandings that
are constructed by people with NP, as intended by the method
[19]. We sampled beyond clinical populations because only a small
minority with persistent pain reach pain clinics. However, people
who complete online research tend to be better educated, younger
and middle class [23], so we may have seriously undersampled
older people among whom some NP conditions such as postherpetic neuralgia are more prevalent than in younger people. Additionally, the sorting process was time-consuming, and 3
participants e-mailed to say that they gave up because of this;
we do not doubt that many more did so but did not inform us. Despite our efforts to reduce demand, it remains a concern and a
barrier.
4.2. Implications and future research
There is no evidence from this study of a shared integrated biopsychosocial model of neuropathic pain, but at least an outline of
one, used by clinicians and patients, would be helpful. Participants
tended to emphasise biological aspects of pain and were ambivalent about or rejected the role of psychological factors. All 4 factors
took a position on cause, usually with physical and psychological
causes clearly segregated [29]. There is material here for more detailed investigation of lay understanding of the causes of NP, but
this probably requires visual and dynamic materials, rather than
words alone. Further, it is unknown what explanations of pain, if
any, are given to patients with NP as part of their health care, or
how they are incorporated or not into their existing framework
of understanding. In general, people with chronic pain value a

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S. Martin et al. / PAIN 155 (2014) 349355

Table 1
Factor themes and participant details for each .
Factor number and description

Diagnoses/causes of pain
Treatments tried

N
Median duration of pain
BPI scores: mean (SD)

Factor 1: NP is a nervous system problem;

psychology inuences pain experience and
acceptance; open to psychological
treatments
Factor 2: NP is nerve damage; psychology is
irrelevant in pain experience; neutral about
psychological treatments

Diagnoses/causes: MS, trauma, surgery, PHN.

Treatments: medication, physical methods, cognitive
behavioural and other psychological treatments

n = 26
Duration median 67 y
Pain 5.5 (1.8)
Interference 5.8 (2.4)
n = 15
Duration median 6y
Pain 5.6 (2.2)
Interference 6.0 (1.6)
n = 11
Duration median 10 y
Pain 4.3 (2.0)
Interference 5.1 (2.7)

Diagnoses/causes: disease-related (cancer, HIV,

diabetes); traumatic (injury), hereditary, mechanical
(nerve entrapment), environmental (toxins).
Treatment: medication, surgery, physical methods.
Diagnoses/causes: traumatic (surgery, injury), diseaserelated (MS, arthritis, shingles), hereditary,
chemotherapy.
Treatments: medications, physical treatments, breathing
and positive thoughts.
Diagnoses/causes: surgery, HIV, chemotherapy,
unknown
Treatments: medication, physical methods, yoga and
meditation, complementary therapies

Factor 3: NP is (irreparable) nerve damage, for

which symptom management is needed;
psychological inuences play a part in pain
perception but psychological treatments
have no role
Factor 4: NP (of recent onset) cause should be
identied; psychological inuences play a
role; treatment may be medical and/or
psychological

n=4
Duration median 12 y
Pain 5.4 (2.0)
Interference 7.3 (2.8)

BPI, Brief Pain Inventory; MS, multiple sclerosis; NSAIDs, nonsteroidal anti-inammatories; PHN, post-herpetic neuralgia.

coherent explanation for their pain [36] and it may resolve worry
and enable them to tackle pain differently [20]. Patients look
mainly to their doctors for explanation of symptoms [48], but doctors and other health care professionals may nd it hard to articulate an integrated model of pain, may apply it only when there is
no identied disease, or may apply it only to certain symptoms;
many have poor understandings of chronic pain [18]. Results also
suggest a wide-ranging approach to treatment modalities by people with NP and a willingness to consider psychological treatments, but availability of the latter is restricted [18,28], and
there are no trials of the predominant treatment, cognitive behavioural therapy, specic to NP [61].
4.3. Conclusion
The current study found, in a self-selected group of people with
NP, constructions of their pain with some similarities but distinct
and interesting differences, some of which may be associated with
particular features of the pain and the individuals medical histories.
It was clear, however, that no viewpoint integrated physical and
psychological factors to make sense of the conditions. Participants
described receiving little explanation in health care, and this is likely
to inuence both the content and the complexity of their models.
This is an important area for investigation and improvement.
Conict of interest statement
None of the authors have any conicts of interest with respect
to this work.
Appendix A
Example of Q-sort distribution for Factor 1.
Appendix A. Supplementary data
Supplementary data associated with this article can be found, in
the online version, at http://dx.doi.org/10.1016/j.pain.2013.10.021.
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