Background
Domain | Items |
---|---|
1: Facial expressions
| Slight frown/sad or frightened expression |
Grimacing, wrinkled forehead, closed or tightened eyes | |
Any distorted expression | |
Rapid blinking | |
2: Verbalisations & vocalisations
| Sighing, moaning, groaning |
Grunting, chanting, calling out | |
Noisy breathing | |
Asking for help | |
Verbally abusive | |
3: Body movements
| Rigid, tense body posture, guarding |
Fidgeting | |
Increased pacing, rocking | |
Restricted movement | |
Gait or mobility changes | |
4: Changes in interpersonal interactions
| Aggressive, combative, resisting care |
Decreased social interactions | |
Socially inappropriate, disruptive | |
Withdrawn | |
5: Changes in activity patterns or routines
| Refusing food, appetite change |
Increase in rest periods | |
Sleep, rest pattern changes | |
Sudden cessation of common routines | |
Increased wandering | |
6 Mental status changes
| Crying or tears |
Increased confusion | |
Irritability or distress |
Theme | Required element |
---|---|
Process
| • Makes use of the best items from existing instruments, developing a meta-tool with a pool of useful items |
• To provide a toolkit, not a single tool, out of which instruments can be created for different contexts of application (type of cognitive impairment, setting etc.) | |
• Provide potential to create specific tools (or additional scales) for specific pain associated conditions (such as oral-facial pain, back pain, neuropathic pain) | |
• Includes a guideline-and web-based, multilingual application | |
• Instruments for use in both clinical practice and research | |
• Creation and validation of instruments follows a predefined process, following the COSMIN* criteria. | |
Quality
| • Practicable and feasible in different settings (home care, long term care, palliative care and acute hospital care) and different countries (with first the focus on the Western world) |
• Sound psychometric properties, i.e. a reliable and valid instrument | |
• Sensitive to change, i.e. identify new pain and detect changes after successful intervention, for instance with pain medication | |
• Feasible and valid in several important groups of people with cognitive impairment, such as dementias, coma/pvs and people with a mental handicap or learning disability. |
Methods
Search strategy
Inclusion of pain assessment tools
Expert panel
Review strategy
Identification of candidate pain assessment items for the PAIC tool
Results
Identification of pain assessment tools
Stolee et al. [24] | Zwakhalen et al. [26] | Herr et al. [21] | Hadjistavropoulos et al. [20] | van Herk et al. [25] | Chapman et al. [19] | Park et al. [23] | Lobbezoo et al. [15] | Herr et al. [22] | Corbett et al. [7] | Husebo et al. [13] | |
---|---|---|---|---|---|---|---|---|---|---|---|
No of scales included in reviews
| 10 | 12 | 10 | 11 | 13 | 3 | 11 | 9 | 15 | 12 | 12 |
Abbey [27] | x | x | x | x | x | x | x | X | |||
x | x | x | x |
X
|
X
| ||||||
x | x | x | x | x | x | x | x | X | |||
x |
X
| X |
X
|
X
| x | x | x | X | |||
DOLOPLUS 2 [34] | x |
X
| x |
X
| x | x | x | x | X | ||
EPCA [35] | x | x |
X
| x | x | X | |||||
X
|
X
| ||||||||||
NOPPAIN [37] | x |
X
|
X
| x | x | x | x | X | |||
PACSLAC [38] |
X
| x |
X
|
X
|
X
| x |
X
| x | X | ||
PAINAD [39] | x | x | x | x |
X
| x | x |
X
| x | X | |
PADE [40] | x | x | x |
X
| x | x | x | x | X | ||
PAINE [41] | x | x | X |
Categorisation and refinement of assessment items
Facial Expression (AGS domain 1) | Vocalization (AGS domain 2) | Body movement (AGS domain 3) |
---|---|---|
1. Cognition | 1. Verbal utterances | 1. Tension |
2. Emotional state | 2. Nonverbal utterances | 2. Defensive behaviour |
3. Anatomically-based descriptions | 3. Breath | 3. Pain relieving adjustments |
4. Autonomic reactions | 4. Restlessness | |
5. Qualitative judgment of expression |
Selection of items for inclusion in the PAIC tool
Frequency of use in published tools | Item explanation derived from published tools | |
---|---|---|
FACIAL EXPRESSION
| ||
Pained expression
| 1 | Facial display of pain |
Frowning
| 7 | Lowering and drawing brows together |
Narrowing eyes
| 1 | Grimacing, narrowed eyes with tension around the eyes |
Closing eyes
| 3 | Not just blinking |
Raising upper lip
| 1 | Grimacing, upper lip raised, nose may be wrinkled |
Opened mouth
| 1 | The lips are parted, jaw is dropped |
Tightened lips
| 2 | Lips are pressed together and appear more narrow |
Clenched teeth
| 3 | Teeth are pressed together with tension |
Empty gaze
| 1 | Eyes do not reflect any emotion or thinking activity (“blank expression”) |
Seeming disinterested
| 1 | Face does not reflect any interest in the environment |
Pale face
| 1 | Pale skin colour |
Teary eyed
| 5 | Watery eyes |
Looking tense
| 3 | Facial display of strain or worry |
Looking sad
| 6 | Facial display of unhappiness, sorrow or low mood |
Looking frightened
| 6 | Facial display of fear, alarm or heightened anxiety |
BODY MOVEMENTS
| ||
Freezing
| 2 | Tense, sudden stiffening, rigid, avoiding movement, holding breath |
Curling up
| 3 | Curling up the body tightly, pulling in arms and legs |
Clenching hands
| 4 | Tensing hands, making fists, grabbing objects tightly |
Resisting care
| 5 | Resisting being moved or resisting care, being uncooperative |
Pushing
| 2 | Actively pushing somebody or something away |
Guarding
| 7 | Protecting affected area, holding body part, avoiding touch, moving away |
Rubbing
| 3 | Tugging or massaging affected area |
Limping
| 3 | Avoiding pain while walking in an uneven way |
Restlessness
| 9 | Fidgeting, agitation, rocking back and forth |
Pacing
| 2 | Wandering restlessly back and forth (might also be in a wheelchair) |
VOCALISATION
| ||
Using offensive words
| 2 | Cursing, swearing, or using foul language |
Using pain-related words
| 5 | Using pain words, like “ouch”, “ow”, or “that hurts |
Repeating words
| 2 | Repeating words or phrases again and again (not stuttering) |
Complaining
| 3 | Expressing being unhappy, sick, uncomfortable, and/or in pain |
Shouting
| 1 | Using a loud voice to express words |
Mumbling
| 3 | Uttering words and/or sounds indistinctly |
Screaming
| 4 | Using a loud and/or high-pitched voice to express sounds |
Groaning
| 10 | Moaning, making a deep, inarticulate sound |
Crying
| 10 | Whimpering, sobbing, wailing, or weeping |
Gasping
| 4 | Breathing sharply, laboriously, and/or loudly |
Sighing
| 3 | Taking in and letting out a long, loud breath |
Creation of preliminary draft of the PAIC tool for experimental and clinical testing
FACIAL EXPRESSIONS | MEANING OF ITEMS | Not at all | Slight degree | Moderate degree | Great degree | Not scored |
---|---|---|---|---|---|---|
a = Item is not clear | ||||||
b = Situation is unsuitable | ||||||
c = Physical status of person not suitable for scoring | ||||||
d = Other | ||||||
Pained expression
a
| Facial display of pain |
0
|
1
|
2
|
3
| a b c d |
Frowning
a
| Lowering and drawing brows together |
0
|
1
|
2
|
3
| a b c d |
Narrowing eyes
c
| Narrowed eyes with tension around the eyes |
0
|
1
|
2
|
3
| a b c d |
Closing eyes
c
| Not just blinking |
0
|
1
|
2
|
3
| a b c d |
Raising upper lip
c
| Upper lip raised, nose may be wrinkled |
0
|
1
|
2
|
3
| a b c d |
Opened mouth
c
| The lips are parted, jaw is dropped |
0
|
1
|
2
|
3
| a b c d |
Tightened lips
c
| Lips are pressed together and appear more narrow |
0
|
1
|
2
|
3
| a b c d |
Clenched teeth
c
| Teeth are pressed together with tension in the jaw |
0
|
1
|
2
|
3
| a b c d |
Empty gaze
b
| Eyes do not reflect any emotion or active thought (“blank expression”) |
0
|
1
|
2
|
3
| a b c d |
Seeming disinterested
b
| Face does not reflect any interest in the environment |
0
|
1
|
2
|
3
| a b c d |
Pale face
d
| Pale skin colour |
0
|
1
|
2
|
3
| a b c d |
Teary eyed
d
| Watery eyes |
0
|
1
|
2
|
3
| a b c d |
Looking tense
e
| Facial display of strain or worry |
0
|
1
|
2
|
3
| a b c d |
Looking sad
e
| Facial display of unhappiness, sorrow or low mood |
0
|
1
|
2
|
3
| a b c d |
Looking frightened
e
| Facial display of fear, alarm or heightened anxiety |
0
|
1
|
2
|
3
| a b c d |
BODY MOVEMENTS | MEANING OF ITEMS | Not at all | Slight degree | Moderate degree | Great degree | Not scored |
---|---|---|---|---|---|---|
a = Item is not clear | ||||||
b = Situation is unsuitable | ||||||
c = Physical status of person not suitable for scoring | ||||||
d = Other | ||||||
Freezing
a
| Sudden stiffening, avoiding movement, holding breath | 0 | 1 | 2 | 3 | a b c d |
Curling up
a
| Curling up the body tightly, pulling in arms and legs | 0 | 1 | 2 | 3 | a b c d |
Clenching hands
a
| Tensing hands, making fists, grabbing objects tightly | 0 | 1 | 2 | 3 | a b c d |
Resisting care
b
| Resisting being moved or resisting care, being uncooperative | 0 | 1 | 2 | 3 | a b c d |
Pushing
b
| Actively pushing somebody or something away | 0 | 1 | 2 | 3 | a b c d |
Guarding
b
| Protecting affected area, holding body part, avoiding touch, moving away | 0 | 1 | 2 | 3 | a b c d |
Rubbing
c
| Tugging or massaging affected area | 0 | 1 | 2 | 3 | a b c d |
Limping
c
| Avoiding pain while walking in an uneven way | 0 | 1 | 2 | 3 | a b c d |
Restlessness
d
| Fidgeting, wringing hands, rocking back and forth | 0 | 1 | 2 | 3 | a b c d |
Pacing
d
| Wandering restlessly back and forth (might also be in a wheelchair) | 0 | 1 | 2 | 3 | a b c d |
VOCALIZATION | MEANING OF ITEMS | Not at all | Slight degree | Moderate degree | Great degree | Not scored |
---|---|---|---|---|---|---|
a = Item is not clear | ||||||
b = Situation is unsuitable | ||||||
c = Physical status of person not suitable for scoring | ||||||
d = Other | ||||||
Using offensive words
a
| Cursing, swearing, or using foul language | 0 | 1 | 2 | 3 | a b c d |
Using pain-related words
a
| Using pain words, like “ouch”, “ow”, or “that hurts” | 0 | 1 | 2 | 3 | a b c d |
Repeating words
a
| Repeating words or phrases again and again (not stuttering) | 0 | 1 | 2 | 3 | a b c d |
Complaining
a
| Expressing being unhappy, sick, uncomfortable, and/or in pain | 0 | 1 | 2 | 3 | a b c d |
Shouting
a
| Using a loud voice to express words | 0 | 1 | 2 | 3 | a b c d |
Mumbling
a
| Uttering words and/or sounds indistinctly | 0 | 1 | 2 | 3 | a b c d |
Screaming
b
| Using a loud and/or high-pitched voice to express sounds | 0 | 1 | 2 | 3 | a b c d |
Groaning
b
| Making a deep, inarticulate sound | 0 | 1 | 2 | 3 | a b c d |
Crying
b
| Whimpering, sobbing, wailing, or weeping | 0 | 1 | 2 | 3 | a b c d |
Gasping
c
| Breathing sharply, laboriously, and/or loudly | 0 | 1 | 2 | 3 | a b c d |
Sighing
c
| Taking in and letting out a long, loud breath | 0 | 1 | 2 | 3 | a b c d |