Translation into Brazilian Portuguese and Cross-Cultural Adaptation of the NCCPC-PV for Pain Evaluation of Patients with Intellectual Disability to Communicate^[*]

Abstract

Objective To perform the translation and cross-cultural adaptation to Brazilian Portuguese of the Non-Communicating Children's Pain Checklist - Postoperative Version (NCCPC-PV) instrument, which assesses acute pain in individuals with severe intellectual disability (ID) who present great cognitive impairment and inability to communicate (CIIC).

Method In the adaptation process, the original NCCPC-PV was translated, back-translated, its versions were discussed by a committee of experts, and the resulting tool was tested in 20 health professionals and 20 caregivers of CCIC patients regarding its semantic clarity.

Results Data from the present study and its participants were analyzed and their results were described. Thus, “Lista de Verificação de Dor em Crianças Não Comunicantes – Versão Pós-operatória” (Br-NCCPC-PV) was obtained as the final version in Brazilian Portuguese.

Conclusion After the present study, the Br-NCCPC-PV was considered adequate for use in the Brazilian population.

Keywords

pain - intellectual disability - pain measurement

Introduction

The World Health Organization (WHO) defines intellectual disability (ID) as a state of the mind that has incomplete or interrupted development of skills that contribute to the level of intelligence, such as cognitive, language and social interaction abilities.[1]

The overall prevalence of ID is of 1.03%, and it is almost twice as high in underdeveloped countries compared to high-income countries.[2] Petterson et al[3] found a prevalence of 1% of ID in the general population, but this prevalence is eight times higher in the case of children who had comorbidities at birth. Valk et al[4] revealed that the risk of comorbidities was 2.5 times higher for people with ID than for those without it. Diagnosing these concurrent diseases in patients with ID can be difficult, mainly regarding the most severe cases, due to the lack of appropriate tools and trained professionals to identify such conditions in these individuals with cognitive impairment and inability to communicate (CIIC).[5]

In addition to the comorbidities, patients with CIIC have a reduced ability to express their own health concerns, providing limited insight into their needs. It has been observed that they tend to suffer more accidents often associated with pain and discomfort; however, their pain is not always readily recognized, and, if poorly evaluated, may be administered improperly or go untreated.[6] [7] [8] The severity of this situation highlights the need to develop better clinical management strategies, thus leading to a substantial reduction in pain, improved quality of life and better long-term outcomes.[7] Identifying these risk factors for specific pain etiologies can help caregivers and professionals.[9]

These individuals with severe ID are at risk because they often have medical conditions that can cause pain, often requiring procedures, surgical or not, that can also be potentially painful. Many have idiosyncratic behaviors that can mask the expression of pain and are therefore difficult to interpret.[10]

Facing the scarcity of instruments to assess acute pain in patients with CIIC, Breau et al[11] developed and validated the Non-communicating Children's Pain Checklist–Postoperative Version (NCCPC-PV), which quantifies pain following surgical procedures, or due to other procedures, performed in other environments, that may cause acute pain.

In Brazil, a country where the prevalence of ID is of 0.8%, and where 54.8% of the cases are severe, there are no instruments developed to evaluate acute pain in patients with CIIC, not even for postoperative conditions.[12] Therefore, the present study aims to describe the translation and cross-cultural adaptation of the NCCPC-PV into Brazilian Portuguese, and, once this tool is validated, it may be safely used in various clinical settings, facilitating and optimizing the analgesic management of this specific type of patient.

Methodology

The present was an observational, cross-sectional and descriptive study. The process used ([Figure 1]) was composed of six stages that followed the guidelines for cross-cultural adaptation of health measurement instruments described by Guillemin et al[12] and modified by Beaton et al.[13]

Fig. 1 Stages of the adaptation process.

In the first stage (1), the original instrument in English was translated into Brazilian Portuguese by two independent translators without previous knowledge of the instrument. The translators were two bilingual native Brazilians: one, a physician, and the other, a professional translator, who reached a final consensus version called Translation Synthesis 1,2 (T1,2).

In the second stage (2), the back-translation into English of T1,2 was performed by two translators, who worked autonomously, independently and blinded to the original instrument. The chosen translators had English as their mother tongue, and were not physicians or from any other field in healthcare. After producing their back-translations, called RT1 and RT2, a single, synthesized version, called Back-Translation Synthesis 1,2 (RT1,2), was developed.

During the third stage (3), the original version of the instrument was evaluated, as well as the T1, T2, T1,2, RT1, RT2 and RT1,2 versions, by an expert committee (EC) that produced a prefinal version. This committee was composed of ten interdisciplinary health professionals involved in the care of patients with CIIC, a psychologist with experience in processes of cross-cultural adaptation and validation of quality of life instruments, and by the four translators involved in the previous steps. The goal was to produce the pretest version.

Therefore, in the fourth stage (4), the pretest version was evaluated regarding the clarity of the terms by a sample of the target population, that is, twenty health professionals and twenty caregivers, using a Likert scale with the same five possibilities: unclear; slightly unclear; neither clear nor unclear; clear; and very clear. The data were collected from May 2017 to September 2017. The group of health professionals included professionals who graduated in some field of health, and who had experience caring for children with CIIC, especially in the management of painful situations. The group of caregivers included caregivers of children with CIIC who are assisted at the Pediatric Orthopedics and/or Rehabilitation outpatient clinics of the institutions involved. We considered unable to participate in the sample the caregivers of patients with self-reported abilities to complain of their pain and incapacity, and the caregivers who were unable to understand all of the processes of the research. For epidemiological purposes, we used questions regarding their practice and experience with patients with CIIC.

The prefinal version was defined during the fifth stage (5). Responses from both groups were assessed separately and jointly, and their medians were calculated to identify items lacking clarity. Due to the small sample size, non-parametric statistics were used. The continuous variables were described as medians and interquartile ranges (IQRs). The categorical variables were described as absolute numbers and percentages. Health professionals and caregivers were compared regarding age, sex, education (elementary school, high school and higher) and origin to assess whether there would be differences in the ability to understand the terms to be adapted. In order to compare the continuous variables, we used the Mann-Whitney test, and the categorical variables were compared by the Fisher exact test or the Chi-squared test. All analyzes were performed using the Statistical Package for the Social Sciences (SPSS, IBM Corp., Armonk, NY, US) software, version 20.0. Values of p < 0.05 were considered statistically significant.

In the sixth stage (6), the items considered less clear were evaluated again only by the caregivers because they obtained lower medians. The six least clear items had a new guiding question: “How could this item become clearer?”. Their open answers were compiled, and the suggestions given by the caregivers were re-discussed with the EC, and the final version was obtained.

The translation was previously authorized by the author of the original NCCPC-PV. The present study was approved by the Ethics in Research Committee (CEP), and we followed every ethical principle involved in research on human subjects in Brazil according to resolution 466/2012 of the Brazilian National Health Council. Participation in the study was voluntary, and every participant signed an informed consent form.

Results

The first step was the translation into Brazilian Portuguese of the original NCCPC-PV. All terms translated (T1, T2 and T1,2 versions) in this stage are described in [Table 1].

Table 1

	Original scale	T1 translation	T2 translation	T1,2 translation
1	Moaning, whining, whimpering (fairly soft)	Gemendo, choramingando, soluçando (levemente)	Gemendo, choramingando, soluçando (levemente)	Gemendo, choramingando, soluçando (levemente)
2	Crying (moderately loud)	Chorando (moderadamente alto)	Chorando (moderadamente alto)	Chorando (moderadamente alto)
4	A specific sound or word for pain (e.g., a word, cry or type of laugh)	Um som ou palavra específica para a dor (p. ex., choro ou tipo de risada)	Um som ou palavra especifica para dor (p. ex., uma palavra, grito ou tipo de sorriso)	Um som ou palavra específica para a dor (p. ex., choro ou tipo de risada)
5	Not cooperating, cranky, irritable, unhappy	Não cooperativa, mal-humorada, irritadiça, triste	Não cooperativa, irritadiça, triste	Não cooperativa, mal-humorada, irritadiça, triste
6	Less interaction with others, withdrawn	Menos interativa com os outros, retraída	Menos interativo com outras pessoas, retraído	Menos interativa com os outros, retraída
7	Seeking comfort or physical closeness	Buscando conforto ou proximidade física	Procurando por conforto ou aproximação física	Buscando conforto ou proximidade física
8	Being difficult to distract, not able to satisfy or pacify	Difícil de distrair, incapaz de ser satisfeita ou acalmada	Difícil de distrair, incapaz de ser satisfeita ou acalmada	Difícil de distrair, incapaz de ser satisfeita ou acalmada
9	A furrowed brow	Testa franzida	Sobrancelha enrugada	Testa franzida
10	A change in eyes, including: squinting of eyes, eyes opened wide, eyes frowning	Uma alteração nos olhos, incluindo: olhos estrábicos, olhos arregalados, olhos franzidos	Uma alteração dos olhos, incluindo olhos estrábicos, olhos arregalados, olhos carrancudos	Uma alteração nos olhos, incluindo: olhos estrábicos (apertados), olhos arregalados, olhos franzidos (semiabertos)
11	Turning down of mouth, not smiling	Virando a boca para baixo, sem sorrir	Boca direcionada para baixo, sem sorrir	Virando a boca para baixo, sem sorrir
12	Lips puckering up, tight, pouting, or quivering	Lábios cerrados, apertados, fazendo biquinho ou tremendo	Lábios franzidos, cerrados, amuados ou tremendo	Lábios cerrados, apertados, fazendo biquinho ou tremendo
13	Clenching or grinding teeth, chewing or thrusting tongue out	Dentes cerrados ou rangendo, mordendo ou pondo a língua para fora	Dentes cerrados ou rangendo, mordendo a língua ou empurrando-a para fora	Dentes cerrados ou rangendo, mordendo ou pondo a língua para fora
14	Not moving, less active, quiet	Sem se movimentar, menos ativa, quieta	Sem movimentar-se, menos ativa, quieta	Sem se movimentar, menos ativa, quieta
15	Jumping around, agitated, fidgety	Debatendo-se, agitada, inquieta	Debatendo-se, agitada, inquieta	Debatendo-se, agitada, inquieta
16	Floppy	Flácido	Flácido	Flácido
17	Stiff, spastic, tense, rigid	Teso, espástico, tenso, rígido	Espástico, tenso, rígido	Teso, espástico, tenso, rígido
18	Gesturing to or touching part of the body that hurts	Gesticulando na direção de ou tocando a parte do corpo que dói	Tocando ou gesticulando em direção ao membro que dói	Gesticulando na direção de ou tocando a parte do corpo que dói
19	Protecting, favoring or guarding part of the body that hurts	Protegendo, favorecendo ou defendendo a parte do corpo que dói	Protegendo, favorecendo ou defendendo a parte do corpo que dói	Protegendo, favorecendo ou defendendo a parte do corpo que dói
20	Flinching or moving the body part away, being sensitive to touch	Retraindo ou afastando a parte do corpo, sendo sensível ao toque	Encolhendo ou recolhendo a parte do corpo que se encontra sensível ao toque	Retraindo ou afastando a parte do corpo, sendo sensível ao toque.
21	Moving the body in a specific way to show pain (e.g., head back, arms down, curls up, etc.)	Movendo o corpo de maneira específica para demostrar dor (p. ex.: cabeça para trás, braços para baixo, em posição fetal, etc.)	Mexendo o corpo de uma maneira específica para demonstrar dor (p. ex., cabeça para trás, braços para baixo, encurvar-se, etc.)	Movendo o corpo de maneira específica para demostrar dor (p. ex.: cabeça para trás, braços para baixo, em posição fetal, encolhido, etc.)
22	Shivering	Tremor	Tremendo	Tremor
23	Change in color, pallor	Alteração na cor, palidez	Alteração de cor, palidez	Alteração na cor, palidez
24	Sweating, perspiring	Sudorese, transpiração	Suando, transpirando	Sudorese, transpiração
25	Tears	Lágrimas	Lágrimas	Lágrimas
26	Sharp intake of breath, gasping	Inspiração brusca, suspiro	Inspiração forçada, suspirando	Inspiração brusca, suspiro
27	Breath holding	Prendendo a respiração	Apneia, prendendo a respiração	Prendendo a respiração

In the second stage, two individual versions of the back translation into English of T1,2 were produced, and then a joint version (RT1,2) was created. [Table 2] shows all of the independently translated terms, as well as the RT1,2 version.

Table 2

	T1,2 version	RT1 back-translation	RT2 back-translation	RT1,2 back-translation
1	Moaning, whining, whimpering (fairly soft)	Gemendo, choramingando, soluçando (levemente).	Gemendo, choramingando, soluçando (levemente)	Gemendo, choramingando, soluçando (levemente).
2	Crying (moderately loud)	Chorando (moderadamente alto).	Chorando (moderadamente alto).	Chorando (moderadamente alto).
3	Screaming/yelling (very loud)	Chorando/berrando (muito alto).	Gritando/ Berrando (muito alto).	Chorando/berrando (muito alto).
4	A specific sound or word for pain (e.g., a word, cry or type of laugh)	Um som ou palavra específica para a dor (p. ex., choro ou tipo de risada).	Um som ou palavra especifica para dor(p. ex., uma palavra, grito ou tipo de sorriso).	Um som ou palavra específica para a dor (p. ex., choro ou tipo de risada).
5	Not cooperating, cranky, irritable, unhappy	Não cooperativa, mal-humorada, irritadiça, triste.	Não cooperativa, irritadiça, triste.	Não cooperativa, mal-humorada, irritadiça, triste.
6	Less interaction with others, withdrawn	Menos interativa com os outros, retraída.	Menos interativo com outras pessoas, retraído.	Menos interativa com os outros, retraída.
7	Seeking comfort or physical closeness	Buscando conforto ou proximidade física.	Procurando por conforto ou aproximação física.	Buscando conforto ou proximidade física.
8	Being difficult to distract, not able to satisfy or pacify	Difícil de distrair, incapaz de ser satisfeito ou acalmado	Difícil de distrair, incapaz de ser satisfeito ou acalmado.	Difícil de distrair, incapaz de ser satisfeito ou acalmado.
9	A furrowed brow	Testa franzida	Sobrancelha enrugada.	Testa franzida.
10	A change in eyes, including: squinching of eyes, eyes opened wide, eyes frowning	Uma alteração nos olhos, incluindo: olhos estrábicos, olhos arregalados, olhos franzidos	Uma alteração dos olhos, incluindo olhos estrábicos, olhos arregalados, olhos carrancudos.	Uma alteração nos olhos, incluindo: olhos estrábicos, olhos arregalados, olhos franzidos.
11	Turning down of mouth, not smiling	Virando a boca para baixo, sem sorrir	Boca direcionada para baixo, sem sorrir.	Virando a boca para baixo, sem sorrir.
12	Lips puckering up, tight, pouting, or quivering	Lábios cerrados, apertados, fazendo biquinho ou tremendo.	Lábios franzidos, cerrados, amuados ou tremendo.	Lábios cerrados, apertados, fazendo biquinho ou tremendo.
13	Clenching or grinding teeth, chewing or thrusting tongue out	Dentes cerrados ou rangendo, mordendo ou pondo a língua para fora.	Dentes cerrados ou rangendo, mordendo a língua ou empurrando-a para fora.	Dentes cerrados ou rangendo, mordendo ou pondo a língua para fora.
14	Not moving, less active, quiet	Sem se movimentar, menos ativa, quieta.	Sem movimentar-se, menos ativa, quieta.	Sem se movimentar, menos ativa, quieta.
15	Jumping around, agitated, fidgety	Debatendo-se, agitada, inquieta	Debatendo-se, agitada, inquieta.	Debatendo-se, agitada, inquieta.
16	Floppy	Flácido	Flácido.	Flácido.
17	Stiff, spastic, tense, rigid	Teso, espástico, tenso, rígido.	Espástico, tenso, rígido.	Teso, espástico, tenso, rígido.
18	Gesturing to or touching part of the body that hurts	Gesticulando na direção de ou tocando a parte do corpo que dói.	Tocando ou gesticulando em direção ao membro que dói.	Gesticulando na direção de ou tocando a parte do corpo que dói.
19	Protecting, favoring or guarding part of the body that hurts	Protegendo, favorecendo ou defendendo a parte do corpo que dói.	Protegendo, favorecendo ou defendendo a parte do corpo que dói	Protegendo, favorecendo ou defendendo a parte do corpo que dói.
20	Flinching or moving the body part away, being sensitive to touch	Retraindo ou afastando a parte do corpo, sendo sensível ao toque.	Encolhendo ou recolhendo a parte do corpo que encontra- se sensível ao toque.	Retraindo ou afastando a parte do corpo, sendo sensível ao toque.
21	Moving the body in a specific way to show pain (e.g. head back, arms down, curls up, etc.)	Movendo o corpo de maneira específica para demostrar dor (p. ex.: cabeça para trás, braços para baixo, em posição fetal, etc.)	Mexendo o corpo de uma maneira específica para demonstrar dor ( p. ex., cabeça para trás , braços para baixo, encurvar-se, etc.	Movendo o corpo de maneira específica para demostrar dor (p. ex.: cabeça para trás, braços para baixo, em posição fetal, encolhido, etc.)
22	Shivering	Tremor	Tremendo	Tremor
23	Change in color, pallor	Alteração na cor, palidez	Alteração de cor, palidez.	Alteração na cor, palidez.
24	Sweating, perspiring	Sudorese, transpiração.	Suando, transpirando.	Sudorese, transpiração.
25	Tears	Lágrimas	Lágrimas	Lágrimas.
26	Sharp intake of breath, gasping	Inspiração brusca, suspiro.	Inspiração forçada , suspiro.	Inspiração brusca, suspiro.
27	Breath holding	Prendendo a respiração.	Apneia , prendendo a respiração.	Prendendo a respiração.

During the third stage, after the evaluation of all versions by the EC, the pretest version was produced, which was evaluated during the fourth stage by 40 individuals. They analyzed the clarity of the 27 items using the pretest version to evaluate 20 reference patients.

Regarding demographic data, the children were on average 3.09 (IQR = 30–41 months) years old, and cerebral palsy (CP) due to cerebral anoxia was the most common diagnosis among them, with 9 (45%) cases. Microcephaly and Down syndrome also had a higher number of cases: 4 (20%) for each condition. [Table 3] illustrates the epidemiological characteristics of the reference patients.

Table 3

Characteristics		n	%
Age	3.09 years* 30–41#
Diagnosis	Cerebral palsy Down syndrome Microcephaly Pigmentar Incontinence (Bloch-Sulzberger) Cornelia Lange Myelomeningocele	9 4 4 1 1 1	45 20 20 5 5 5
Current treatment	Physiotherapy Speech therapy Occupational therapy Hydrotherapy Equine-Assisted Therapy	20 20 20 1 1	100 100 100 5 5
Previous admissions	0.0*
Previous surgeries	0.0*
Reasons	Whitout surgery Inguinal hernia Cardiac Surgery Heart desease Cleft lip Gastrostomy Cerebralspinal fluid cyst Cryptorchidism Ventriculoperitoneal shunt (VPS) valve change 3th ventricule hiperpressure Hyperpressure	12 3 2 1 1 1 1 1 1 1	60 15 5 5 5 5 5 5 5 5

All health professionals involved had more than 10 years of training; 14 (70%) had more than 10 years of experience with CIIC patients, and 14 (70%) worked in public hospitals. The data are described in [Table 4].

Table 4

Characteristics		n	%
Profession	Orthopedic doctor Pediatrician Clinical pain physician Resident doctor Nurse Nursing technician/assistant Occupational therapist Physiotherapist	3 3 2 0 3 2 3 4	15 15 10 0 15 10 15 20
Place where they come in contact with patients with cognitive impairment and inability to communicate	Public hospital Private hospital Public outpatient clinic Private outpatient clinic	14 2 7 5	70 10 35 25
Length of experience with patients with cognitive impairment and inability to communicate	< 1 year 1–5 years 5–10 years 10–20 years > 20 years	1 3 2 6 8	5 15 10 30 40
Time since graduation	< 1 year 1–5 years 5–10 years 10–20 years > 20 years	0 0 0 10 10	0 0 0 50 50

In the group of caregivers ([Table 5]), we observed that the mother was the primary caregiver of the patient in 17 (85%) cases; most of them were homemakers (15 [75%] cases), and they remained between 12 and 18 hours (7 [35%] cases) or more than 18 hours (11 [55%] cases) per day in the presence of the reference child.

Table 5

Characteristics		n	%
Relationship to the patient	Mother Father Aunt	17 1 2	85 5 10
Daily amount of time spent with the patient	6–12 hours 12–18 hours >18 hours Alternate days	1 7 11 1	5 35 55 5
Occupation	Homemaker Doorman Hair stylist Nursing technician Business administrator Dentist	15 1 1 1 1 1	75 5 5 5 5 5

[Table 6] shows the medians of the evaluation of each of the 27 items that compose the prefinal version of the questionnaire.

Table 6

	Translation of the prefinal version	Health professionals		Caregivers		Overall
		Medians	Percentiles	Medians	Percentiles	Medians	Percentiles
1	Gemendo, choramingando, soluçando (levemente)	5	3.25–5.0	4	4.0–4.0	4	4.0–5.0
2	Chorando (moderadamente alto)	5	4.0–5.0	4	4.0–4.75	4	4.0–5.0
3	Chorando/berrando (muito alto)	5	5.0–5.0	4	4.0–5.0	5	4.0–5.0
4	Um som ou palavra específica para a dor (p. ex., choro ou tipo de risada)	4.5	2.25–5.0	4	2.25–4.0	4	2.25–5.0
5	Não cooperativa, mal-humorada, irritada, triste	5	4.0–5.0	4	4.0–4.75	4	4.0–5.0
6	Menos interativa com os outros, retraída	5	4.0–5.0	4	3.25–4.0	4	4.0–5.0
7	Buscando conforto ou proximidade física	5	4.0–5.0	4	3.0–4.0	4	4.0–5.0
8	Difícil de distrair, incapaz de ser satisfeita ou acalmada	5	4.0–5.0	4	3.25–4.0	4	4.0–5.0
9	Testa franzida	5	4.0–5.0	2	2.0–4.0	4	2.0–5.0
10	Uma alteração nos olhos, incluindo: olhos estrábicos, olhos arregalados, olhos franzidos	5	4.0–5.0	3.5	2.0–4.0	4	2.25–5.0
11	Virando a boca para baixo, sem sorrir	4	2.25–5.0	2	1.0–4.0	3.5	2.0–4.75
12	Lábios cerrados, apertados, fazendo biquinho ou tremendo	5	4.0–5.0	3.5	2.0–4.0	4	3.0–5.0
13	Dentes cerrados ou rangendo, mordendo ou pondo a língua para fora	4.5	3.25–5.0	4	2.0–4.0	4	2.25–5.0
14	Sem se movimentar, menos ativa, quieta	5	3.5–5.0	4	4.0–4.75	4	4.0–5.0
15	Debatendo-se, agitada, inquieta	5	5.0–5.0	4	4.0–5.0	5	4.0–5.0
16	Flácido	5	3.25–5.0	2	1.25–4.0	4	2.0–5.0
17	Teso, espástico, tenso, rígido	5	5.0–5.0	4	2.0–4.0	4	3.25–5.0
18	Gesticulando na direção ou tocando a parte do corpo que dói	5	5.0–5.0	4	2.0–4.0	4	4.0–5.0
19	Protegendo, favorecendo ou defendendo a parte do corpo que dói	5	4.0–5.0	4	2.0–4.0	4	3.25–5.0
20	Retraindo ou afastando a parte do corpo, sendo sensível ao toque	5	4.25–5.0	4	3.0–4.0	4	4.0–5.0
21	Movendo o corpo de maneira específica para demostrar dor (p. ex.: cabeça para trás, braços para baixo, em posição fetal, corpo encolhido, etc.)	5	4.0–5.0	4	4.0–4.0	4	4.0–5.0
22	Tremor	5	4.0–5.0	4	3.25–5.0	4.5	4.0–5.0
23	Alteração na cor da pele, palidez	5	4.0–5.0	4	3.0–5.0	4	3.25–5.0
24	Sudorese, transpiração	5	4.0–5.0	2	1.0–4.0	4	2.0–5.0
25	Lágrimas	5	4.0–5.0	5	4.0–5.0	5	4.0–5.0
26	Inspiração brusca, suspiro	5	3.25–5.0	4	2.0–4.0	4	3.0–5.0
27	Prendendo a respiração	5	3.0–5.0	4	2.0–4.0	4	3.0–5.0

[Table 7] correlates some characteristics of the caregivers and health professionals. We found that the median age of the health professionals was 10 years older than that of the caregivers. Females were more present, but there was no significant difference between the two groups. A significant difference was found regarding higher education among health professionals.

Table 7

		Caregivers		Health professionals		p-value
Characteristics
Age (in years)		33.5*		43.5*		1.0△
		30–41#		40–52#
		n	%	n	%
Sex	Female Male	19 1	95 5	18 2	90 10	1.0
SchoolingΩ	Higher education	2	10	20	100	0.001
	High-school graduate	6	30	0	0
	Elementary-school graduate	9	45	0	0
	Incomplete elementary school	3	15	0	0

During the evaluation of the medians and percentiles of the prefinal version, 6 items were identified (items 9, 10, 11, 12, 16 and 24) with medians ≤ 3.5, that is, items that were considered “neither clear nor unclear” according to the Likert scale used. These worse ratings were found only among the caregivers, and for this reason they were chosen for a retest with an open questionnaire to try to make the last improvements and clarity adjustments.

First, item 9 of the pre-final version, “testa franzida” was adjusted by suggestion of the EC to “testa franzida, com o rosto tenso” for better a correlation with pain ratings.

In item 10, the term “squinting of eyes” was translated as “olhos estrábicos”, and it was poorly understood. After rediscussing this, we found that the best translation for “squinting of eyes” would be “olhos apertados”, and this was the expression chosen for this item in the final version. Another term suggested for “squinting of eyes” was “olhos apertados, fixados, ou assustados.”

As for item 11, “virando a boca para baixo, sem sorrir,” after a brief discussion, it was altered to “virando a boca para baixo, sem sorrir, fazendo beicinho.” Regarding item 12, all suggestions were rejected by the EC, and the item remained as it was already defined in the pretest version.

Item 16 was the one that generated the most discussion: “flácido.” Several suggestions were presented by the caregivers, such as “com o músculo mole,” “musculature mole,” “corpo relaxado” and “molinho.” In the end, the suggestion accepted was “flácido, com o corpo relaxado. ”

Finally, item 24, “sudorese, transpiração” was altered to “sudorese, suando muito, transpirando.”

Other changes were also suggested. In item 1, the term “whimpering” was changed to its original translation as “choramingando,” and the term “whining” was altered to “reclamando.” In item 3, the term “screaming” was changed to “gritando.” In item 13, the term “chewing,” which had been previously translated as “mordendo,” was changed back to “mastigando.” In item 20, the final translation was “encolhendo ou recolhendo a parte do corpo que se encontra sensível ao toque.” Finally, the term “gasping” in item 26 was translated as “ofegante.”

Thus, we developed the final version of the cross-cultural adaptation to Brazilian Portuguese, which was called “Lista de Verificação de Dor em Crianças Não Comunicantes - Versão Pós-Operatória” (Br-NCCPC-PV), and was finally considered adapted.

Discussion

The NCCPC-PV has attracted the attention of several centers specializing in the treatment of patients with CIIC, due to its easy applicability, as it requires only 10 minutes of observation to fill out the 27 items, without the need to be constantly watching the patient (who should only be in the same room), and it can be used both in hospitals and in similar locations during episodes of acute pain. It showed good consistency and reliability in various validation studies.[11] [14] [15] [16]

We chose the adaptation process developed by Beaton et al[13] because it is considered consistent and detailed to better match the terms translated to the target language, in this case, Brazilian Portuguese.

A limitation found in the sample of caregivers was that only 40% of the children they cared for had already undergone postoperative experiences because they came from secondary health care services, which may have caused a bias in the sample. Despite the possibility that this factor is limiting in relation to the caregivers' ability to test the items of the NCCPC-PV, this sample was accepted because the instrument was developed not only for postoperative pain, but also for episodes of acute pain, which we believe that all of the patients have experienced several times. In addition, the sample tested was not composed of patients, but of caregivers with profound knowledge of the behavior of their assisted children, also regarding acute pain. Thus, it was considered as the main factor(and it was even an inclusion criterion) that caregivers had experience with children with CIIC, even if they had not had postoperative experiences.

Regarding their profile, most of the caregivers were female (95%), mothers of the patients (85%), who spent more than 12 hours a day as caregivers (90%), and who had the home environment as the main setting for their daily activities (75%). All of these factors are related, and they reveal the great impact that ID has on families. This almost exclusive participation of females, especially mothers, as caregivers, followed the same trend as that described in the literature.[17] [18]

To quantify the level of experience of our sample of health professionals, we analyzed the length of their experience with their professional activities. We observed that all professionals (100%) had more than 10 years into their professions since graduation. With this objective, we also found that 14 professionals (70%) had more than 10 years of experience treating patients with CIIC. This sample was considered experienced in relation to their health professional activities, contributing to the good quality of the adaptation. The age, although not showing a significant difference, revealed a distance of 10 years between caregivers and health professionals.

The entire sample (n = 40) had almost all of the combined medians between 4 and 5 (only one median was of 3.5), that is, overall, the translated items were considered “clear” and “very clear.”

At the end of the process, the Br-NCCPC-PV, which was adapted and is described in [Figure 2], was considered appropriate for professionals and reference caregivers to be used for patients with CIIC after validation, and it was well understood.

Fig. 2 Brazilian portuguese version of Non-communicating Children's Pain Checklist -Postoperative Version (Br-NCCPC-PV).

Conclusion

The present study adapted the NCCPC-PV to Brazilian Portuguese to enable a better understanding when applied by caregivers and health professionals to measure acute pain in Brazilian children. After the whole process, the Br-NCCPC-PV will be validated in Brazilian patients to assess its internal and external consistency, in order to test its reliability.

Conflito de Interesses

Os autores declaram não haver conflito de interesses.

^* Study conducted at Programa de Pós-Graduação em Ciências Médicas da Universidade de Fortaleza (UNIFOR), Fortaleza, CE, Brazil.

• Referências

• 1 World Health Organization. Atlas. Global Resources for Persons with Intellectual Disabilities: 2007. World Health Organization; 2007: 108
• 2 Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil 2011; 32 (02) 419-436
• 3 Petterson B, Bourke J, Leonard H, Jacoby P, Bower C. Co-occurrence of birth defects and intellectual disability. Paediatr Perinat Epidemiol 2007; 21 (01) 65-75
• 4 van Schrojenstein Lantman-De Valk HM, Metsemakers JF, Haveman MJ, Crebolder HF. Health problems in people with intellectual disability in general practice: a comparative study. Fam Pract 2000; 17 (05) 405-407
• 5 Harbour CK, Maulik PK. Epidemiology of Intellectual Disability. Int Encycl Rehabil 2013; 2010: 1-7
• 6 LaChapelle DL, Hadjistavropoulos T, Craig KD. Pain measurement in persons with intellectual disabilities. Clin J Pain 1999; 15 (01) 13-23
• 7 Breau LM, Camfield CS, McGrath PJ, Finley GA. The incidence of pain in children with severe cognitive impairments. Arch Pediatr Adolesc Med 2003; 157 (12) 1219-1226
• 8 Oberlander TF, Grunau RE, Fitzgerald C, Whitfield MF. Does parenchymal brain injury affect biobehavioral pain responses in very low birth weight infants at 32 weeks' postconceptional age?. Pediatrics 2002; 110 (03) 570-576
• 9 Breau LM, Camfield CS, McGrath PJ, Finley GA. Risk factors for pain in children with severe cognitive impairments. Dev Med Child Neurol 2004; 46 (06) 364-371
• 10 McGrath PJ, Rosmus C, Canfield C, Campbell MA, Hennigar A. Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals. Dev Med Child Neurol 1998; 40 (05) 340-343
• 11 Breau LM, Finley GA, McGrath PJ, Camfield CS, Ph D. Validation of the Non-communicating Children's Pain Checklist-Postoperative Version. Anesthesiology 2002; 96 (03) 528-535
• 12 Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 1993; 46 (12) 1417-1432
• 13 Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000; 25 (24) 3186-3191
• 14 Johansson M, Carlberg EB, Jylli L. Validity and reliability of a Swedish version of the Non-Communicating Children's Pain Checklist--Postoperative Version. Acta Paediatr 2010; 99 (06) 929-933
• 15 Zanchi C, Massaro M, Ferrara G. , et al. Validation of the Italian version of the Non-Communicating Children's Pain Checklist-Postoperative Version. Ital J Pediatr 2017; 43 (01) 75
• 16 Zabalia M, Breau LM, Wood C. , et al. Validation francophone de la grille d'évaluation de la douleur-déficience intellectuelle - version postopératoire. Can J Anaesth 2011; 58 (11) 1016-1023
• 17 Pimenta RA. Avaliação da qualidade de vida e sobrecarga de cuidadores de pessoas com deficiência intelectual. Rev Bras Ciênc Saúde 2010; 14 (03) 69-76
• 18 Pisula E, Porębowicz-Dörsmann A. Family functioning, parenting stress and quality of life in mothers and fathers of Polish children with high functioning autism or Asperger syndrome. PLoS One 2017; 12 (10) e0186536