The International Spinal Cord Injury Pain Extended Data Set (ISCIPEDS)
The working-group consists of:
Eva Widerström-Noga, DDS PhD (Chair); Fin Biering-Sørensen, MD, PhD; Thomas N Bryce, MD;
Diana D Cardenas, MD, MHA; Nanna Brix Finnerup, MD, PhD; Mark P Jensen, PhD; J Scott
Richards, PhD; Elizabeth J Richardson, PhD, MSPH; Philip Siddall, MD, PhD
Our interdisciplinary working group consists of members with published research expertise in the area
of spinal cord injury (SCI) related pain. The members have expertise with regard to the clinical
condition of pain, pain taxonomy, psychophysics of pain, psychology, epidemiology and assessment
of pain and represent the Executive Committee of the International Spinal Cord Injury Standards and
Data Sets (ASIA/ISCoS; Biering-Sørensen) and major organizations with an interest in SCI-related
pain (i.e., the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA),
Association of Spinal Cord Injury Professionals (ASCIP), American Pain Society (APS) and
International Association for the Study of Pain (IASP)). Most of the committee members have
memberships in several of these organizations.
Pain after SCI is a significant problem for those who experience it as well as for their healthcare
providers because of its persistent nature. Pain in people with SCI is classified in broad categories as
nociceptive, neuropathic (at- or below level of injury), other or unknown (Bryce et al., 2012 a,b).
Neuropathic pain may be associated with evoked pain, such as allodynia or hyperalgesia (Eide et al.,
1996; Finnerup et al., 2001). The neuropathic pains are rarely completely eliminated by available
treatment interventions but can be meaningfully reduced in some people (Siddall et al., 2006;
Cardenas et al., 2013). Because of the persistent nature of pain associated with SCI, there is a need to
understand and assess both pain and associated psychological factors.
The clinical presentation of pain after SCI often includes multiple concomitant pain problems that are
superimposed upon various physical impairments and consequences of injury. This presents unique
challenges in the assessment of both pain and associated psychosocial factors and ultimately for
clinical management.
The overall purpose of the International Spinal Cord Injury Pain Data Sets (ISCIPDS) is to
standardize the collection and reporting of pain in the SCI population. The ISCIPDS contains a basic
(ISCIPBDS) and an extended (ISCIPEDS) data set. The ISCIPBDS contains a minimal amount of
clinically relevant information concerning pain that can be collected in the daily practice of healthcare
professionals with expertise in SCI. The first version of the International Spinal Cord Injury Pain
Basic Data Set ISCIPBDS was published in 2008 (Widerstrom-Noga et al., 2008) and a revised
version ISCIPBDS v2.0 (Widerstrom-Noga et al., 2014) in 2014. The revised version was shortened
to increase its clinical utility and to reflect the new SCI pain taxonomy (Bryce et al., 2012 a,b). It is
adopted by the National Institute of Health, National Institute of Neurological Disorders and Stroke
(NINDS), Common Data Elements (CDEs) as a supplemental/highly recommended dataset to be
collected in clinical SCI pain research
(www.commondataelements.ninds.nih.gov/SCI.aspx#tab=Data_Standards) (Jakeman et al., in press)
The ISCIPEDS is directly based on the pain problems identified in the ISCPBDS and is primarily
intended to provide guidance regarding the assessment of pain, and associated sensory function and
psychosocial factors in clinical pain studies and trials. Consistent evaluation of these factors will
facilitate research collaboration between clinical centers and thus expedite the development of
beneficial treatments. The use of comparable sets of outcome measures in research studies will
increase efficiency and facilitate collaborations, translation, interpretation, and application of results.
The ISCIPEDS is intended to be collected by researchers or healthcare professionals involved in
research studies and who are familiar with SCI. Data should be collected by interview (dependent on
the recommended mode of administration for a specific instrument) and examination.
The ISCIPEDS includes several important assessment components divided in 4 sections: (1) Pain
symptom assessment including individual variables related to the temporal course, severity,
unpleasantness, tolerability of pain, as well as questionnaires related to the pain type and symptom
severity. This section is divided into: A. Overall pain (assessments are intended to provide an overall
assessment of all pain that a person may experience). B. Each pain problem (assessments are
intended to be performed for each separate pain problem identified in the ISCIPBDS); and C.
Recommended questionnaires intended to provide supplemental information as appropriate for a
specific purpose or interest. (2) Sensory assessment to detect and quantify common sensory
abnormalities, including light touch, pinprick, and cold sensation in a neuropathic pain area; (3)
Treatments used in the past 12 months and for ongoing treatments, dose (if appropriate), frequency
of treatment, any adverse effects, and a rating of global impression of change; and (4) Psychosocial
domains and comorbid conditions including outcomes, mediating factors, or comorbid conditions
(e.g., depression, anxiety, quality of life). Forms for all assessment variables except for
questionnaires can be found in the Appendix.
Pain symptoms and signs are particularly important to evaluate in populations, such as SCI, where
pain is typically heterogeneous, persistent and often severe. Symptoms and signs associated with
neuropathic pain may not only facilitate a better understanding of the clinical condition but may also
provide a foundation for subgroup analyses in clinical trials and thus facilitate future mechanismsbased treatment interventions (Baron et al., 2012; Demant et al., 2014 ). The pain symptom measures
included in the ISCIPEDS are intended to be simple, and clinically useful. They are divided into
measures that can be used to assess overall pain and measures that are more useful if asked for a
specific pain problem. There is also a section of recommended pain questionnaires that assess the
presence and severity of pain symptoms and have data supporting their utility after SCI. These
measures are intended to provide supplemental information as appropriate for a specific purpose or
interest. The sensory measures are intended to detect and quantify common sensory abnormalities,
including mechanical allodynia, mechanical hyperalgesia, and thermal allodynia commonly associated
with neuropathic pain types.
Information regarding a persons’ previous and current experience with various treatment interventions
is important both for the planning of clinical studies and facilitates screening of potential participants
of a clinical trial. The ISCIPEDS is designed to capture information regarding both past (last 12
months) and current treatments. Due to possible recall biases, the effectiveness of past treatments are
not captured in detail but only whether a person has had the treatment in the past 12 months and if it
was helpful or not, or unknown. For current, ongoing treatments, more details are captured, including
the dose (if appropriate), frequency of treatment, any adverse effects, and a rating of global
impression of change (Guy 1976).
The psychosocial domains that researchers should consider assessing in their studies of SCI pain
include outcome variables, mediating variables and comorbid conditions that would be of interest to
those seeking to develop, test, or expand biopsychosocial models of SCI-related pain. The ISCIPEDS
working group selected those domains, and identified potential measures of those domains, as a
function of (a) their relevance to individuals with SCI and chronic pain and (b) the existence of
published findings that support the validity of the measures selected in samples of individuals with
SCI, and as much as possible (c) their availability in the public domain.
There is a vast array of outcomes measures that have been recommended for use in neuropathic pain
research (Haanpӓӓ et al., 2011) and in SCI pain research specifically (Bryce et al., 2007). Reviewing
all such measures is beyond the scope of the ISCIPEDS. We recommend that researchers carefully
examine the appropriateness of any measure they might like to use with respect to utility in the SCI
chronic pain population. For example, standard measures for pain-related outcomes may have content
that is inappropriate for persons with SCI, or that can be misleading if endorsed (e.g., unusual sensory
experiences). The instruments in the ISCIPEDS were selected in part to minimize that problem. The
reader is also referred to the SCIRE (www.scireproject.com) and NINDS CDEs
(www.commondataelements.ninds.nih.gov/SCI.aspx) websites where an extensive number of
outcome measures are evaluated with respect to their applicability and psychometric properties. While
the measures reviewed in these loci are not focused only on pain per se, they offer other resources for
SCI researchers who want to use the most valid scales, particularly those which are being proposed
for adoption across studies.
Acknowledgements: We thank William Bauman, Susan Charlifue, and Vanessa Noonan for valuable
comments and suggestions.
1. PAIN SYMPTOM ASSESSMENT:
A. Overall pain (assessment includes all pain problems but could also be assessed for each pain
problem (previously identified by the ISCIPBDS) if appropriate).
__________________________________________________________________________________
VARIABLE NAME:
Number of days with pain in the last 7 days including today
DESCRIPTION:
This variable specifies the total number of days with pain during the last 7
days, including today.
CODES:
0 – none
1 – one day
2 – two days
3 – three days
4 – four days
5 – five days
6 – six days
7 – seven days
Unknown
“Today” is the day the individual answers the question regardless time of
day. The duration of pain during the day does not matter in answering this
question.
__________________________________________________________________________________
COMMENTS:
VARIABLE NAME:
Average pain intensity of the worst pain in the last week
DESCRIPTION:
A 0 – 10 Numerical Rating Scale (ranging from 0 = “No pain” to a maximum
of 10 = “The most intense pain imaginable”) of average pain intensity for the
worst pain problem the respondents experience). Please note that “last week”
specifically refers to the last seven days including today.
CODES:
0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10
COMMENTS:
Pain intensity is the most common pain domain assessed in research and
clinical settings. Although different rating scales have proven to be valid for
assessing pain intensity, including the Numerical Rating Scale (NRS), the
Verbal Rating Scale (VRS), and the Visual Analogue Scale (VAS), the 0 – 10
NRS has the most strengths and fewest weaknesses of available measures
(Jensen & Karoly, 2000). Moreover the 0 – 10 NRS has been recommended
by the IMMPACT consensus group for use in pain clinical trials (Dworkin et
al., 2005) and by the 2006 NIDRR SCI Pain outcome measures consensus
group (Bryce et al., 2007).
The seven day time frame was selected to balance the need to assess pain over
a long enough epoch to capture usual pain, against the need to keep the time
frame short enough to maximize recall accuracy.
The instruction and endpoints used were designed to differentiate between
pain intensity and pain unpleasantness (Dannecker et al., 2007). For example,
the intensity of pain is how strong the pain feels and the unpleasantness of
pain is how disturbing the pain is. In order to better understand the difference
between pain intensity and unpleasantness one can substitute the word
“sound” for “pain”. Pain intensity is analogous to the loudness of a sound
while unpleasantness is analogous to the aversiveness of a sound not
necessarily related to its loudness.
__________________________________________________________________________________
VARIABLE NAME:
Average pain unpleasantness in the last week
DESCRIPTION:
A 0 – 10 Numerical Rating Scale (ranging from 0 = “Not at all unpleasant” to a
maximum of 10 = “The most unpleasant pain imaginable”) of average pain
unpleasantness for (up to) three pain problems (the three worst pain problems
respondents experience). Please note that “last week” specifically refers to the
last seven days including today.
CODES:
0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10
COMMENTS:
Pain is a result of sensory, cognitive, and affective dimensions, and the
emotional dimension can be evaluated separately from intensity (Price et al.,
1987). Although different rating scales have proven to be valid for assessing
pain intensity, including the Numerical Rating Scale (NRS), the Verbal
Rating Scale (VRS), and the Visual Analogue Scale (VAS), the 0 – 10 NRS
has the most strengths and fewest weaknesses of available measures (Jensen
& Karoly, 2000).
The instruction and endpoints used were designed to differentiate between pain
intensity and pain unpleasantness (Dannecker et al., 2007). For example, the
intensity of pain is how strong the pain feels and the unpleasantness of pain is
how disturbing the pain is. In order to better understand the difference between
pain intensity and unpleasantness one can substitute the word “sound” for
“pain”. Pain intensity is analogous to the loudness of a sound while
unpleasantness is analogous to the aversiveness of a sound not necessarily
related to its loudness.
__________________________________________________________________________________
VARIABLE NAME:
Number of days with manageable/tolerable pain in the last 7 days
including today
DESCRIPTION:
This variable specifies the total number of days with pain during the last 7
days, including today.
CODES:
0 – none
1 – one day
2 – two days
3 – three days
4 – four days
5 – five days
6 – six days
7 – seven days
Unknown
COMMENTS:
“Today” is the day the individual answers the question regardless time of
day. The duration of manageable/tolerable pain during the day does not
matter in answering this question.
Manageable or tolerable pain is a construct reported by Zelman et al., 2004,
and not specific to pain after SCI. Focus group methodology has suggested
that manageable or tolerable pain is pain that permits concentration on
something other than the pain, perhaps by using a treatment or self-remedy
that “takes the edge off” pain and allows performance of daily activities or
“getting something done.” Other factors associated with manageable pain are
lower levels of negative mood, feeling well enough to socialize and not
experiencing excessive adverse effects of ongoing treatments including
medication.
__________________________________________________________________________________
B. Each pain problem (to be assessed for each pain problem previously identified by the
ISCIBPDS)
__________________________________________________________________________________
VARIABLE NAME:
Pain intensity in present moment
DESCRIPTION:
A 0 – 10 Numerical Rating Scale (ranging from 0 = “No pain” to a maximum
of 10 = “The most intense pain imaginable”) of present pain intensity for (up
to) three pain problems (the three worst pain problems respondents
experience). Please note that “present” specifically refers to this moment.
CODES:
0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10
COMMENTS:
Pain intensity is the most common pain domain assessed in research and
clinical settings. Although different rating scales have proven to be valid for
assessing pain intensity, including the Numerical Rating Scale (NRS), the
Verbal Rating Scale (VRS), and the Visual Analogue Scale (VAS), the 0 – 10
NRS has the most strengths and fewest weaknesses of available measures
(Jensen & Karoly, 2000). Moreover the 0 – 10 NRS has been recommended
by the IMMPACT consensus group for use in pain clinical trials (Dworkin et
al., 2005) and by the 2006 NIDRR SCI Pain outcome measures consensus
group (Bryce et al., 2007).
__________________________________________________________________________________
VARIABLE NAME:
How long does your pain usually last?
DESCRIPTION:
This variable provides an estimate of the duration of pain. Some pain types
are very brief and may be felt several times per day. This question refers to
the duration of each separate pain event.
CODES:
One minute or less
More than one minute but less than one hour
At least one hour, but less than 24 hours
At least 24 hours but not continuous
Constant or continuous
Unknown
COMMENTS:
The duration of pain can be defined when a specific pain follows a
predictable pattern. If no predictable pattern for a specific pain exists, the
answer “unknown” is given.
VARIABLE NAME:
When during the day is the pain most intense?
DESCRIPTION:
This variable identifies the diurnal peak in pain intensity.
CODES:
Morning
Afternoon
Evening
Night
Unpredictable; pain is not consistently more intense at any one time of day
“Morning” is between 6.01 am and 12.00 am (06.01 and 12.00); “Afternoon”
is between 12.01 am and 6.00 pm (12.01 and 18.00); “Evening” is between
6.01 pm and 12.00 pm (18.01 and 24.00); “Night” is between 0.01am and
6.00 am (00.01 and 06.00)
__________________________________________________________________________________
COMMENTS:
C. Recommended questionnaires
Instruments for the assessment of pain type or pain symptom severity are listed in Table 1.
Nociceptive pain assessment
The assessment for nociceptive pain will be assessed as in non-SCI populations.
__________________________________________________________________________________
2. SENSORY ASSESSMENT
______________________________________________________________________________
VARIABLE NAME:
Dynamic light touch
DESCRIPTION:
Sensation rated as normal (compared to a control area in a non-affected skin
area), absent (no sensation felt), hypoesthesia (decreased sensation compared
to control area), hyperesthesia (increased sensation compared to control
area), allodynia (the touch provokes pain), other (changed sensation that
cannot be categorized otherwise). If allodynia is present the pain is rated on a
0 – 10 Numerical Rating Scale (ranging from 0 = “No pain” to a maximum of
10 = “Pain as bad as you can imagine”).
COMMENTS:
Can be assessed by light stroking the skin with an innocuous moving stimuli,
e.g. a cotton wisp, cotton wool tip, or a brush (e.g. Somedic standardized
brush, Sweden) of approximately 2 cm with a speed of 1-2 cm/sec. (Rolke et
al. 2006).
__________________________________________________________________________________
VARIABLE NAME:
Pinprick
DESCRIPTION:
Sensation rated as normal (compared to a control area in a non-affected skin
area), absent (no sensation felt), hypoalgesia (decreased pain sensation
compared to control area), hyperalgesia (increased pain sensation compared
to control area), other (changed sensation that cannot be categorized
otherwise). If hyperalgesia is present the pain is rated on a 0 – 10 Numerical
Rating Scale (ranging from 0 = “No pain” to a maximum of 10 = “Pain as bad
as you can imagine”).
COMMENTS:
Can be assessed using a disposable safety pin or calibrated monofilaments
(Rolke et al., 2006)
__________________________________________________________________________________
VARIABLE NAME:
Cold
DESCRIPTION:
Sensation rated as normal (compared to a control area in a non-affected skin
area), absent (no sensation felt), hypoesthesia (decreased sensation compared
to control area), hyperesthesia (increased sensation compared to control area),
allodynia (the cold provokes pain), other (changed sensation that cannot be
categorized otherwise). If allodynia is present the pain is rated on a 0 – 10
Numerical Rating Scale (ranging from 0 = “No pain” to a maximum of 10 =
“Pain as bad as you can imagine”).
COMMENTS:
Can be assessed using a cold thermoroll (Somedic Sweden) of 20 or 25C, a
piece of cold metal, an ice cube or an acetone droplet. For determination of
cold detection and cold pain thresholds, thermal tests can be performed using
thermo testers (TSA, Medoc, Israel or MSA, Somedic, Sweden) (Rolke et al.
2006).
__________________________________________________________________________________
3. TREATMENTS
__________________________________________________________________________________
VARIABLE NAME:
Past treatment
DESCRIPTION:
This variable specifies treatments for pain received in the past and treatment
response.
Person to indicate (“Check”) each treatment that they have received in the
past for their pain. Where possible, the person also indicates whether it was
helpful (“Yes”) or not helpful (“No”). If the person, cannot remember or is
uncertain about effectiveness they indicate “Uncertain”. The section can be
completed to indicate treatments and response for all types of pain overall or
multiple forms for specific pain types. Due to the fact that the management of
pain in SCI is challenging with a wide range of treatments being tried,
including pain medications, such as opioids, non-steroidal anti-inflammatory
drugs, acetaminophen, tricyclic antidepressants and anticonvulsants, as well
as physical therapy and alternative treatment approaches, such as massage,
marijuana, acupuncture and hypnosis (Cardenas and Jensen 2006, Murphy
and Reid 2001, Norrbrink Budh and Lundeberg 2004), self-management
(Umlauf 1992), as well as relaxation and psychotherapy, procedural and
surgical interventions the list provided is very long to cover most
possibilities.
__________________________________________________________________________________
COMMENTS:
VARIABLE NAME:
Current treatment
DESCRIPTION:
This variable specifies the current treatments for pain, timing of treatment,
response and side effects.
COMMENTS:
Person to indicate current treatments for pain, including dose (“Dose”) (if
medication) and frequency (“How often”). Effectiveness is assessed using the
Patient Global Impression of Change (“PGIC”); (Guy, 1976, Bryce et al.,
2007). Any side effects or adverse events (“Side effects/adverse events”)
related to the treatment are also to be noted. The section can be completed to
indicate treatments and response for all types of pain overall or multiple
forms for specific pain types.
__________________________________________________________________________________
4. PSYCHSOCIAL AND COMORBID CONDITIONS
A number of psychometric instruments are available for assessing pain relevant domains and these are
listed in Table 2.
__________________________________________________________________________________
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Rolke R, Baron R, Maier C, Tölle TR, Treede RD, Beyer A, Binder A, Birbaumer N, Birklein F,
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Siddall PJ, Cousins MJ, Otte A, Griesing T, Chambers R, Murphy TK. (2006). Pregabalin in central
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Spitzer RL, Kroenke K, Williams JB. (1999). Validation and utility of a self-report version of
PRIME-MD: the PHQ primary care study. Primary Care Evaluation of Mental Disorders. Patient
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Spitzer RL, Kroenke K, Williams JB, Löwe B. (2006). A brief measure for assessing generalized
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Umlauf RL. (1992). Psychological interventions for chronic pain following spinal cord injury. Clin J
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Table 1. Instruments for determining pain type and/or pain symptom severity.
Domain
Instrument
Pain Type
(screening onlynot for
individual
assessment)
Douleur
Neuropathique 4
questions (DN4)
Pain Quality
Construct
Measured
Neuropathic pain
type
Intended
Population
General
Mode of
Length
administration
Self or
7 items for
Examiner
Self; 10 items
for Examiner
References
Spinal Cord
Injury Pain
Instrument
(SCIPI)
Pain Quality
Assessment Scale
(PQAS)
Neuropathic pain
type
SCI
Self or
Examiner
4 or 7 items
Bryce et al.,
2014
Pain symptom
severity
General
Self
20 items
Jensen et al.
(2006)
Short form
McGill Pain
Questionnaire 2
(SF-MPQ-2)
Pain symptom
severity
General
Self
22 items
Dworkin et al.
(2009)
Neuropathic Pain
Symptom
Inventory (NPSI)
Pain symptom
severity
Neuropathic
pain
Self
12 items
Bouhassira et
al. (2004)
Bouhassira, et
al. (2005);
Hallstrom, et
al. (2011).
Availability
Free for non-funded
academic users . Visit
www.proqolid.org/instrum
ents/neuropathic_pain_4_q
uestions_dn4
Free for use.
Can be accessed in the
appendix of article by
Bryce et al., 2014.
Free for non-funded
academic users . Visit
www.proqolid.org/instrum
ents/pain_quality_assessm
ent_scale_and_revised_pai
n_quality_assessment_scal
e_pqas_and_pqas_r
Free for academic users if
used in studies not funded
by commercial companies.
Visit
www.proqolid.org/instrum
ents/short_form_mcgill_pa
in_questionnaire_sf_mpq_
2?fromSearch=yes&text=y
es.
Copyright. Free for nonfunded academic users.
Visit
www.proqolid.org/instrum
ents/neuropathic_pain_sym
ptom_inventory_npsi
Neuropathic Pain
Questionnaire
(NPQ)
Pain symptom
severity
Neuropathic
pain
Self
12 items
Krause and
Backonja
(2003)
PainDETECT
(PD-Q)
Pain symptom
severity
Neuropathic
pain
Self
10 items
Freynhagen et
al. (2006)
Free for use. Can be
accessed in the appendix of
article by Krause and
Backonja, 2003.
Copyright. Free. See
www.pfizerpatientreported
outcomes.com/therapeuticareas/pain/neuropathicpain
Table 2. Psychosocial instruments available for assessing pain relevant domains.
Domain
Depression
Anxiety
Instrument
Patient Health
Questionnaire-9
(PHQ-9)
Construct
Measured
Depression
symptoms
Intended
Population
Primary care;
core measure
in SCI model
system
General
Mode of
Length
administration
Self
9 items; 8-item
and 2-item
versions
available
Self
8 items
References
Availability
Spitzer et al.,
1999; Kroenke et
al., 2003.
Free via Pfizer
www.phqscreeners.c
om/
Amtmann et al.,
2011; Amtmann
et al., 2014.
Free via Assessment
Center. Visit
www.assessmentcent
er.net
to complete a request
for online pdf
versions of available
instruments.
Free via Pfizer
www.phqscreeners.c
om/
PROMIS
Depression Short Form
Depression;
minimizes
somatic
confounds
Generalized
Anxiety
Disorder-7
(GAD-7)
PROMIS
Anxiety - Short
Form
Anxiety
symptoms
Primary care
Self
7 items
Spitzer et al.,
2006.
Anxiety
symptoms
General
Self
8 items
Amtmann et al.,
2011.
Tampa Scale of
Kinesiophobia
(TSK)
Fear of
pain/re-injury
Developed
for low back
pain; used
across
chronic pain
populations
Self
17 items
Miller et al.,
1991; Vlaeyen et
al., 1995.
Free via Assessment
Center. Visit
www.assessmentcent
er.net
to complete a request
for online pdf
versions of available
instruments.
Items can be found
in the article by
Vlaeyen et al.
Quality of Life/
Satisfaction with
Life
PTSD Checklist
– Civilian
Version (PCL-C)
PTSD
symptoms
General
Self
20 items
Weathers et al.,
2013.
To obtain this scale,
visit the VA National
Center for PTSD
website to complete
the online request
form:www.ptsd.va.g
ov/professional/asses
sment/adult-sr/ptsdchecklist.asp
Short-Form-36
(SF-36)
Perceived
functional
health and
well-being
Healthrelated
quality of life
General
medical
Self or
Examiner
36 items; 8
sub-scales
Ware et al., 1993.
To obtain licensing,
visit:
www.sf-36.org
General
medical
Self
5 items
EuroQol Group,
1990.
Satisfaction
and quality of
life
Spinal cord
injury
Self or
Examiner
37 items
May & Warren,
2001; May &
Warren 2002.
General
quality of
life;
satisfaction
with physical
and mental
health
Psychologica
l resilience
Spinal cord
injury
Self
3
Charlifue et al.,
2012.
To register study and
submit licensing fees
(if applicable):
www.euroqol.org
For direct access:
www.uic.edu/orgs/ql
i/questionaires/questi
onnairehome.htm
Items can be found
in the Charlifue et al.
article.
General
Self
25 items; 10item, 2-item
versions
available
Connor &
Davidson, 2003.
EuroQoL-5
Dimension
Questionnaire
(EQ-5D)
Quality of Life
Index (QLI) SCI version
International SCI
Basic Data Set QoL items
Resilience
Connor Davidson
Resilience Scale
(CD-RISC)
To obtain any
version of the scale,
a request form can be
found at: www.cdrisc.com/
Mood
Positive and
Negative Affect
Schedule
(PANAS)7
positive and
negative
affect
General
Self
20 items
Watson et al.,
1998.
Can be accessed in
the appendix of the
original article by
Watson et al.
Participation
Craig Handicap
Assessment and
Reporting
Technique
(CHART) – SF
Community
integration
and
independence
Variety of
physical
rehabilitation
populations
Self or
Examiner
19 items for
CHART-SF
Whiteneck et al.,
1992.
Available via Craig
Hospital website:
www.craighospital.o
rg/repository/docume
nts/Research%20Inst
ruments/CHART%2
0Manual.pdf
Appendix
1. PAIN SYMPTOM ASSESSMENT
A. Overall pain
Number of days with pain in the last 7 days including today:
 none;  1;  2;  3;  4;  5;  6;  7;  unknown
Average pain intensity of the worst pain last week:
0 = no pain; 10 = the most intense pain imaginable:
 0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Average pain unpleasantness in the last week
0 = not at all unpleasant; 10 = the most unpleasant pain imaginable
 0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Number of days with manageable/tolerable pain in the last 7 days including today
 none;  1;  2;  3;  4;  5;  6;  7;  unknown
B. Each pain problem
Pain intensity in present moment
0 = no pain; 10 = the most intense pain imaginable:
 0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
How long does your pain usually last?
 ≤ 1 min;  > 1 min but < 1 hr;  ≥ 1 hr but < 24 hrs;  ≥ 24 hrs;  constant or continuous;  unknown
When during the day is the pain most intense?
-12.00);
-
-
06.00)
(pain is not consistently more intense at any one time of day)
-
2. SENSORY ASSESSMENT
A. Dynamic light touch
At level of injury
 Normal
 Absent
 Hypoesthesia
 Hyperesthesia
 Allodynia
 Other _________
If allodynia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Below level of injury
 Normal
 Absent
 Hypoesthesia
 Hyperesthesia
 Allodynia
 Other _________
If allodynia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Notes: Left or right side can be noted here
B. Pinprick
At level of injury
 Normal
 Absent
 Hypoalgesia
 Hyperalgesia
 Other _________
If hyperalgesia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Below level of injury
 Normal
 Absent
 Hypoalgesia
 Hyperalgesia
 Other _________
If hyperalgesia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Notes: Left or right side can be noted here
C. Cold (Thermoroller, Acetone, Termotester)
At level of injury
 Normal
 Absent
 Hypoesthesia
 Hyperesthesia
 Allodynia
 Other _________
If allodynia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Below level of injury
 Normal
 Absent
 Hypoesthesia
 Hyperesthesia
 Allodynia
 Other _________
If allodynia, rate the intensity:  0;  1;  2;  3;  4;  5;  6;  7;  8;  9;  10
Notes: Left or right side can be noted here
3. TREATMENTS
A. Past treatments
This section can either be filled out for overall pain or for each separate pain component.
Please indicate previous treatments (over the last 12 months) and whether the treatment was helpful.
Please indicate all treatments you have had (over the last 12 months)
Was the treatment
helpful?
Check
Yes
Physiotherapy
Aerobic exercise (low to moderate intensity)
Passive exercise (non-weight bearing or against resistance, e.g.,
stretching)
Resistance exercise (strength building, e.g., weight training)
Position adjustment (in wheelchair, bed, etc.)
Joint mobilisation/manipulation (incl. chiropractic, osteopathic)
Other, specify
Passive and stimulation therapy
Massage
Acupressure
Transcutaneous electrical nerve stimulation (TES, TNS, TENS)
Ultrasound
Laser
Heat therapy (incl. heat-packs, shortwave)
Other, specify
Relaxation and Psychotherapy
Bio-feedback/relaxation training
Relaxation (relaxation techniques, e.g., muscle relaxation or deep
breathing)
Meditation (meditation techniques, e.g., concentrative, religious)
Mindfulness meditation (meditation using mindfulness technique)
Hypnosis
Cognitive/Behavioural therapy
Other psychotherapy
Other, specify
Oral and topical medication
Antidepressants (e.g., amitriptyline, nortriptyline, duloxetine)
Antiepileptics (e.g., pregabalin, gabapentin, carbamazepine)
Tramadol
Opioids (e.g., morphine, oxycodone, buprenorphine, fentanyl)
Cannabinoids (e.g., marijuana)
Acetaminophen/paracetamol
NSAIDs/aspirin e.g., ibuprofen, naproxen, celecoxib, meloxicam
Benzodiazepines e.g., diazepam
No
Uncertain/
Unknown
Antispasticity drugs e.g., baclofen, tizantidine
Topical anaesthetics e.g., lidocaine/lignocaine
Topical capsaicin
Other, specify
Procedural interventions
Trigger point injection/Dry needling
Acupuncture
Peripheral nerve/motor point block (incl. alcohol, phenol, steroid,
anaesthetic blocks, botulinum toxin injection)
Joint injections (incl. shoulder, knee, facet joint, ilio-sacral)
Intravenous lidocaine
Intravenous ketamine
Epidural block
Intrathecal pumps (incl. morphine, ziconotide, clonidine, baclofen)
Spinal cord stimulator
Transcranial brain stimulation (tDCS or rTMS)
Other, specify
Surgical interventions
Dorsal root entry zone lesion
Spinal surgery (incl. stabilization, rod removal, untethering the cord,
shunt)
Deep brain stimulation (implanted brain electrodes)
Other, specify
Other treatments
Specify
B. Current treatments For examples of treatments please see previous scetion (A. Past treatments)
Treatment
Dose
How often
PGIC*
Side effects/adverse
events
*PGIC - Patient Global Impression of Change Indicate the effect of the treatment on your global
wellbeing using one of the following descriptors:
Very much improved (1) – Much improved (2) – Minimally improved (3) – No change (4) –
Minimally worse (5) – Much worse (6) – Very much worse (7)