The Affected Limb Perception questionnaire (ALPQ)
We developed a structured questionnaire to assess subjective disturbance in the perception of the affected upper limb (UL) following stroke.
We developed two versions of the questionnaire: (i) a short version (the b-ALPQ, b- for ‘binary’), based on binary yes/no answers, compatible with acute patients’ vigilance, fatigability and availability in an acute stroke unit and (ii) a standard version (VAS-ALPQ), for patients seen at later stages of the disease, which aims at providing a more sensitive and quantitative assessment of the deficits by using a continuous visual analogue scales (VAS). Other authors already shown the efficacy of VAS scales to detect and investigate body disownership after a brain lesion (Ronchi et al., 2020).
The questionnaire assesses a wide spectrum of BPs related alterations, listed in Table 1: it includes frequently documented alterations (e.g. anosognosia for hemiplegia, somatoparaphrenia) as well as additional less documented ones identified from our experience with stroke patients (namely upper limb disconnection, change in physical characteristics, illusory movements). The evaluation of additional BPs deficits (anosognosia for hemiasomatognosia, over-care for the upper-limb, etc.) were initially included in the questionnaire, but removed in order to keep the time of administration of the questionnaire compatible with clinical practice. Since some studies suggest that pain could alter body perception [28], and that it is a common symptom after stroke [29, 30], the ALPQ also assesses pain as control item.
INSERT Table 1 around here
Table 1
Items included in the b-ALPQ and the VAS-ALPQ
|
b-ALPQ
|
VAS-ALPQ
|
|
yes/no
|
VAS
|
Fatigue
|
|
X
|
Sadness
|
|
X
|
Anxiety
|
|
X
|
Most-affected limb
|
1. Pain
|
X
|
X
|
2. Anosognosia for hemiplegia
|
X
|
X
|
3. Anosodiaphoria for hemiplegia
|
X
|
X
|
4. Hemiasomatognosia
|
X
|
X
|
5. Somatoparaphrenia
|
X
|
X
|
a) UL belonging to someone else
|
b) UL not being human
|
6. Personification of the affected limb
|
X
|
X
|
7. Illusion of modification of physical characteristics
|
X
|
X
|
a) Temperature
|
b) Weight
|
c) Length
|
8. Illusory movements
|
X
|
X
|
9. Supernumerary /Undernumerary limb
|
X
|
X
|
10. Upper-limb disconnection
|
X
|
X
|
11. Misoplegia
|
X
|
X
|
12. Involuntary movements (lack of agency)
|
X
|
X
|
Less-affected limb
|
1. Anosognosia for hemiplegia
|
|
X
|
2. Hemiasomatognosia
|
|
X
|
3. Somatoparaphrenia (UL belonging to someone else)
|
|
X
|
Evaluation of altitudinal neglect
|
Altitudinal neglect
|
|
X
|
The items are always presented in the same order, as listed in Table 1. In addition to the BPs alterations related items that are included in the b-ALPQ, the VAS-ALPQ includes three initial items to assess the general status of the patient at the moment of the administration: fatigue, sadness, and anxiety. Moreover, three BPs alterations related items regarding the less-affected upper-limb are administered as control items, after the evaluation of the most-affected upper-limb, as described in Table 1. Finally, altitudinal neglect (also called vertical neglect) [31–35] is evaluated at the end of the questionnaire. It is not assessed at the beginning in order to limit the risk of inducing a persistent response to the middle of the scales. A description of the altitudinal neglect assessment is available in Additional file 1.
In case of unilateral cortical lesion, the most affected upper limb is the one contralateral to the lesion, while in case of cerebellar lesion, the most affected upper limb is the ipsilesional one. In case of bilateral lesions, the limb with the highest sensorimotor deficits at T0 or T1 (or contralateral to the most affected hemisphere in the unlike case of no sensorimotor deficit) is considered as the most affected one.
In the acute phase, patients are asked to report their feelings in the present and past 24 hours. In the sub-acute and chronic phase, the questions refer to the past 7 days.
In this study, the b-ALPQ is in French language, and the VAS-ALPQ in French and in Italian. Depending on the patient’s condition and answers to the questionnaire, the b-ALPQ is administered in 5 to 10 minutes and the VAS-ALPQ in 20 to 50 minutes.
The b-ALPQ
The b-ALPQ is administered verbally to the patient i.e., the questions are read by the practitioner and the patient answers verbally with “yes” or “no” answers.
If the patient reports an altered BR sensation (i.e. “yes” answer), he/she is invited to further describe the characteristics of her/his altered sensation (if any), through structured questions, for the following items: somatoparaphrenia, personification of the affected limb, illusion of modification of physical characteristics, illusory movements, supernumerary/undernumerary limb, upper-limb disconnection and involuntary movements.
The VAS-ALPQ
In order to allow the questionnaire to be administered to patients suffering from visual hemineglect, the VAS are presented vertically and centred on the patient’s midline, as previously described by other authors [16]. A sentence is presented at the top and at the bottom of the scale, and the patient is asked to indicate her/his response in relation to the two statements (see Fig. 2.A.). The sentence describing a BR alteration is always positioned at the top of the scale, while the opposite one (i.e. describing no BR alteration) is positioned at the bottom. The top of the scale corresponds to a score of 14, while the bottom corresponds to zero (i.e. no alteration).
We developed an ad-hoc application in order to administer the VAS-ALPQ using a tablet. To run the app, we chose a Samsung Galaxy Tab A7, which has a symmetrical frontal layout and does not contain any element that could bias the attention of the patient towards the top or bottom of the screen.
For each item of the VAS-ALPQ, the examiner reads the top and bottom sentences of the VAS, pointing at them with the stylet. Then the patient answers the VAS directly on the tablet, using the same stylet (see Fig. 2.A). If the patient’s answer on the VAS is spatially close to the bottom (i.e. zero), the examiner asks the patient to verbalise her/his answer in order to understand whether s/he was aiming to report no alterations or a mild alteration (VAS > 0 but close to zero).
For each item of the VAS-ALPQ, in case of an answer indicating a BR alteration (any time the value of the corresponding VAS is > 0), the practitioner asks verbally the patient to rate on a 3-point scale the intensity and frequency of the reported sensation. In addition, similarly to the b-ALPQ, additional structured questions are asked verbally by the practitioner to guide the patient to further describe the characteristics of the reported sensation for the following items: somatoparaphrenia, personification of the affected limb, illusion of modification of physical characteristics, illusory movements, supernumerary/undernumerary limb, upper-limb disconnection and involuntary movements. The answers to these additional questions are collected directly on the application (see Fig. 2.B) and may also allow to detect a misunderstanding of an ALPQ item (e.g. if a very high frequency and intensity is reported in complementary questions, while a very low score on the VAS scale is indicated).
Before the administration of the VAS-ALPQ, two preliminary evaluations are performed to ensure that the patient will be able to answer the VAS-ALPQ and allow her/him to familiarize with the procedure: (1) the patient’s ability to perceive the vertical line and discriminate its two extremities is evaluated by asking her/him to indicate the upper and lower extremities of a vertical line and to follow the line with the stylet; (2) the patient’s understanding of the use of a VAS is verified with two examples. These examples do not concern the body and suppose that the patient answer at the upper extremity of the scale for the first example, and between the two extremities for the second example.
Instructions
Several key rules are followed when administering the questionnaire. For example, when asking the questions related to the upper-limb, the examiner points at the arm/hand saying “this arm/this hand” but never touches it, nor uses the pronoun “your” (“your arm/your hand”). This prevents to give tactile stimulation on the affected side or to perform a confrontation with a potential feeling of disownership. In order to administer the VAS-ALPQ to all patients in the same way, an instruction booklet was created (indicating, for instance, when to accept a request from the patient to change her/his answer and how to record it).
INSERT FIGURE 2 around here
Complementary evaluations
Complementary evaluations are collected within ± 2 days to the administration of the b-ALPQ at T0, and within ± 7 days to the administration of the VAS-ALPQ at T1, T2 and T3. The following functions are assessed: a) Somatosensation, including superficial sensation, as well as static and dynamic proprioception; b) Upper limb motor function, including force, strength, spasticity; c) Upper-limb activity is assessed by patient’s therapist in a 4-point Likert scale for all patients at T0, T1 and T2, as well as, at one study site (Villa Beretta Rehabilitation Center), with accelerometer bracelets on both wrists at T1 and T2; d) Cognitive functions, including memory, personal neglect, language, executive functions and upper-limb apraxia; e) Anxiety and depression. The full set of tests are listed in Table 2.
When applicable, the less-affected limb is always assessed before the most-affected limb.
The procedure for the administration of each complementary evaluations as well as the outcome measures are further described in Additional file 1.
INSERT Table 2 around here
Table 2
List of complementary evaluations collected at each timepoint
|
STROKE PATIENTS
|
CONTROL SUBJECTS
|
|
Acute
|
Sub-Acute
|
Chronic
|
|
T0
|
T1
|
T2
|
T3
|
Affected Limb Perception Questionnaire
|
|
|
|
|
|
b-ALPQ
|
X
|
|
|
|
|
VAS-ALPQ
|
|
X
|
(X)
|
(X)
|
X
|
Somatosensory functions of the UL
|
|
|
|
|
|
Superficial
|
|
|
|
|
|
Tactile Detection (Em-NSA) [36]
|
|
X
|
(X)
|
(X)
|
|
Sharp/Blunt discrimination (Em-NSA) [36]
|
|
X
|
(X)
|
(X)
|
|
2-point discrimination test
|
|
Subgroup
|
Subgroup
|
Subgroup
|
X
|
Proprioception
|
|
|
|
|
|
Dynamic (RASP) [37, 38]
|
X (finger only)
|
X
|
(X)
|
(X)
|
|
Static (Thumb Localizing Test) [39]
|
|
X
|
(X)
|
(X)
|
|
Motor function of the UL
|
|
|
|
|
|
Grip strength* [40]
|
|
X
|
X
|
X
|
X
|
Fugl-Meyer UL [41]
|
|
VB
|
VB
|
VB
|
|
Short Fugl-Meyer UL [42]
|
X
|
X
|
X
|
X
|
|
Ataxia (item from the Fugl-Meyer UL)* [41]
|
X
|
X
|
X
|
X
|
|
Modified Ashworth Scale [43]
|
|
X
|
X
|
X
|
|
Motricity Index [44, 45]
|
|
VB
|
VB
|
VB
|
|
ARAT [46]
|
|
VB
|
VB
|
VB
|
|
Box and blocks [47]
|
|
VB
|
VB
|
VB
|
|
9-hole peg test [48]
|
|
VB
|
VB
|
VB
|
|
Physiotherapist's feedback
|
X
|
X
|
X
|
Subgroup
|
|
Upper-limb activity
|
|
|
|
|
|
Physio/Occupational therapist's feedback
|
X
|
X
|
X
|
Subgroup
|
|
Spontaneous arm use (ARYS™ pro accelerometer bracelets)
|
|
VB
|
VB
|
|
|
Body Representations
|
|
|
|
|
|
FLUFF [49]
|
|
X
|
(X)
|
(X)
|
|
Personal Neglect (BEN) [50]
|
X
|
X
|
(X)
|
(X)
|
|
Bilateral Extinctions (BEN) [50]
|
X
|
X
|
(X)
|
(X)
|
|
Neuropsychological evaluations
|
|
|
|
|
|
MoCA [51]
|
|
X
|
Subgroup
|
Subgroup
|
X
|
Apples [52, 53]
|
|
X
|
(X)
|
(X)
|
|
HADS [54]
|
|
X
|
X
|
X
|
|
TICSf-12 (for French speaking sites) [55]
|
|
X
|
Subgroup
|
Subgroup
|
|
AAT (for Italian speaking site) [56]
|
|
X
|
Subgroup
|
Subgroup
|
|
Trail Making Test [57] /Color Trail Test [58]
|
|
X
|
X
|
Subgroup
|
X
|
RBMT faces or objects [59]
|
|
X
|
(X)
|
(X)
|
|
Digit Span Forward and Backward [60–63]
|
|
X
|
Subgroup
|
Subgroup
|
X
|
Mahieux-Laurent’s test for apraxia [64]
|
|
X
|
(X)
|
(X)
|
|
Neuropsychologist/Speech therapist's feedback
|
|
X
|
X
|
Subgroup
|
|
T0, T1, T2, T3 = timepoint of evaluation of stroke patients
|
* when feasible by the patient
|
X = for all patients/subjects
|
(X) = only for patients who did not have the maximum score at the previous timepoint
|
VB = Performed only at one rehabilitation site (Villa Beretta Rehabilitation Center)
|
Subgroup = Data collected only if evaluation is performed in routine practice or if time allows
|