Association between gross motor function and quality of life in a group of Brazilian adults with cerebral palsy: an exploratory study

Asociación entre la función motora gruesa y la calidad de vida de un grupo de adultos brasileños con parálisis cerebral: un estudio exploratorio

ABSTRACT

International studies indicate that gross motor function can influence the health-related quality of life (HRQoL) of adults with Cerebral Palsy (CP). However, HRQoL is a complex construct that may also be influenced by cultural factors. Objective: To verify the association between Gross Motor Function (GMF) and HRQoL in a group of Brazilian adults with CP. Methods: This quantitative, cross-sectional and exploratory study included 30 individuals with CP, aged between 18 and 54 years old, living in a small/medium-sized municipality. Gross motor function was assessed using the the Gross Motor Function Classification System (GMFCS), while HRQoL was measured using the Short-Form Health Survey (SF-36), divided into physical and mental health summaries. Results: Better GMF explained 37% (adjusted R² = 0.373) of the variability in HRQoL related to functional capacity, and 22% (adjusted R² = 0.221) of the physical aspects summary. Conversely, a more compromised GMF explained 15% (adjusted R² = 0.146) of the variability in HRQoL related to emotional aspects. Conclusions: Better GMF partially explains higher HRQoL related to greater physical functioning or summary of physical aspects. On the other hand, greater impairment in GMF partially explains higher HRQoL related to emotional aspects in adults with CP residing in a Brazilian municipality. These results align with findings from international studies.

Keywords
Cerebral Palsy; Adults; Motor Skills, Quality of Life

RESUMO

Estudos internacionais indicam que a função motora grossa pode influenciar na qualidade de vida relacionada à saúde (QVRS) de adultos com paralisia cerebral (PC); entretanto, a QVRS é um constructo complexo e pode ser influenciada por fatores culturais. O objetivo do trabalho foi verificar a associação entre a função motora grossa (FMG) e a QVRS de um grupo de adultos brasileiros com PC. Trata-se de estudo quantitativo, transversal e exploratório realizado com 30 indivíduos com PC, com idades entre 18 e 54 anos e residentes em um município de pequeno/médio porte. Para a função motora grossa foi utilizado o Sistema de Classificação da Função Motora Grossa (GMFCS). Para a QVRS foi utilizado o Short-Form Health Survey (SF-36), dividido entre sumário de aspectos físicos e sumário de aspectos mentais. Os resultados obtidos indicam que uma melhor FMG explica 37% (R² ajustado=0,373) da QVRS relacionada à capacidade funcional e 22% (R² ajustado =0,221) da relacionada ao sumário de aspectos físicos. Por outro lado, uma FMG mais comprometida explica 15% (R² ajustado=0,146) da QVRS relacionada aos aspectos emocionais. Assim, tem-se que uma melhor FMG explica parte da QVRS relacionada a maior capacidade funcional ou ao sumário de aspectos fisicos; em contrapartida, um maior comprometimento da FMG explica, em parte, uma maior QVRS relacionada aos aspectos emocionais de adultos com PC residentes de um município brasileiro. Esses resultados corroboram achados da literatura internacional.

Descritores
Paralisia Cerebral; Adultos; Habilidades Motoras; Qualidade de Vida

RESUMEN

Estudios internacionales indican que la función motora gruesa puede influir en la calidad de vida relacionada con la salud (CVRS) de adultos con parálisis cerebral (PC); sin embargo, la CVRS es un constructo complejo y puede verse influenciado por factores culturales. Este trabajo tuvo el objetivo de verificar la asociación entre la función motora gruesa (FMG) y la CVRS de un grupo de adultos brasileños con PC. Se trata de un estudio cuantitativo, transversal y exploratorio realizado con 30 personas con PC, de 18 a 54 años y que viven en un municipio pequeño/mediano. Para la función motora gruesa se utilizó el Sistema de Clasificación de la Función Motora Gruesa (GMFCS). Para la CVRS se utilizó el Short-Form Health Survey (SF-36), dividido entre sumario de aspectos físicos y sumario de aspectos mentales. Los resultados obtenidos indican que una mejor FMG explica el 37% (R² ajustado=0,373) de la CVRS relacionada con la capacidad funcional y el 22% (R² ajustado =0,221) de la relacionada con el sumario de aspectos físicos. Por otro lado, una FMG más comprometida explica el 15% (R² ajustado=0,146) de la CVRS relacionada con los aspectos emocionales. Así, queda claro que una mejor FMG explica parte de la CVRS relacionada con la mayor capacidad funcional o con el sumario de aspectos físicos; en cambio, una FMG más comprometida explica, en parte, una mayor CVRS relacionada con los aspectos emocionales de adultos con PC que viven en un municipio brasileño. Estos resultados corroboran los hallazgos de la literatura internacional.

Palabras clave
Parálisis Cerebral; Adultos; Habilidades Motoras; Calidad de Vida

INTRODUCTION

Cerebral palsy (CP) is defined as a non-progressive disorder affecting movement and posture development in the fetal or infant brain, potentially limiting an individual’s ability to perform activities. Beyond motor challenges, individuals with CP may also experience difficulties related to sensation, perception, cognition, communication, behavior, and secondary musculoskeletal complications ²⁰⁰⁷ .

Technological and healthcare advancements have significantly increased the life expectancy of people with CP, for whom childhood mortality was a common outcome just a few decades ago ²⁰²⁰ . As they transition into adulthood, individuals with CP are generally expected to establish emotional and financial independence, maintain a job, form long-term partnerships, pursue meaningful recreational activities, and engage in social interactions with friends and others ²⁰¹⁷ .

However, despite CP being a non-progressive condition, aging can lead to a decline in motor function. This decline, when combined with factors such as fatigue, pain, and environmental barriers, often results in decreased participation in daily life activities ^{2020 , 2018} . Over time, these changes have been shown to push individuals with CP towards more passive activities that involve fewer people, which can negatively affect their self-perception and create feelings of social exclusion ²⁰⁰⁹ , ultimately impacting their health-related quality of life (HRQoL).

HRQoL refers to an individual’s perception of how disease and treatment affect various aspects of their physical, mental, and social well-being ²⁰¹⁵ . Recent studies have increasingly focused on HRQoL in adolescents and young adults with cerebral palsy ^{2021 , 2010 - 2020} . According to van der Slot et al. ²⁰¹⁰ , gross motor activity levels in individuals with CP significantly influence their HRQoL perception.

Research on adults with CP in Brazil is limited ^{2021 - 2023} , and no studies have specifically examined the HRQoL of this population. While international studies have explored this topic ^{2021 , 2010 - 2020} , it is well-established that sociocultural factors play a critical role in shaping HRQoL perceptions. From a life course perspective, individuals are shaped by the historical and geographical contexts they experience ²⁰²¹ . Therefore, we believe that investigating HRQoL in Brazilian adults with CP is crucial, as the findings could inform interventions tailored to their specific needs. As such, this study sought to explore the association between gross motor function (GMF) and HRQoL in a sample of Brazilian adults with CP.

METHODOLOGY

Study design, population, and setting

This is a quantitative, cross-sectional, and exploratory study. The participants were patients from the Specialized Rehabilitation Center (CER) IV, located in a small/ medium-sized municipality that serves individuals from the Jequitinhonha macro-region in the state of Minas Gerais, Brazil.

Selection criteria

The study included individuals with a confirmed diagnosis of CP, as documented in their medical records, who aged from 18 to 54 years, had preserved speech, and agreed to participate by signing an informed consent form. Those who were unable to understand the research objectives, the evaluation process, or to respond to the questionnaires were excluded from the study, similar to Rožkalne et al ²⁰¹⁹ .

Instruments

A customized questionnaire was administered to collect information regarding the participants’ health condition and sociodemographic characteristics. The economic profile was assessed using the Economic Classification Criteria Brazil (CCEB) from the Brazilian Association of Research Companies (ABEP).

The Gross Motor Function Classification System (GMFCS) was used to assess levels of gross motor function (GMF). This system classifies individuals primarily based on their mobility, as follows: Level I: individuals can walk at home, school, outdoors, and in the community; Level II: individuals can walk in most environments. However, environmental factors such as uneven terrain, slopes, long distances, time constraints, weather conditions, peer acceptance, and personal preferences can influence mobility choices; Level III: individuals can walk using a manual mobility device; Level IV: individuals use wheeled mobility in most settings and require an adapted seat for pelvic and trunk control, and Level V: individuals are transported in wheelchair in all settings ¹⁹⁹⁷ .

To assess health-related quality of life (HRQoL), the Short Form Health Survey (SF-36) was used. This survey consists of 36 items divided into eight domains: Physical functioning (10 items); role limitations due to physical health (four items); pain (two items); general health (five items); energy/fatigue (four items); social functioning (two items); role limitations due to emotional problems (three items); and emotional well-being (five items) ¹⁹⁹⁴ . The final score is calculated by weighing the data and transforming the raw scores into a scale ranging from 0 to 100, in which 0 represents the worst and 100 represents the best outcome for each domain ¹⁹⁹⁷ .

For this study, the SF-36 was use following Ware et al. ¹⁹⁹⁴ and has also been employed in prior studies involving adults with CP ²⁰²¹ . These authors demonstrated that the eight SF-36 domains can be grouped into two independent summary measures: the physical component summary (Physical functioning, role limitations due to physical health, pain, and general health) and the mental component summary (energy/fatigue, social functioning, role limitations due to emotional problems, and emotional well-being). These summaries are calculated as weighted sums of the scores for each scale.

Procedures

Data collection was scheduled in advance according to each participant’s availability and was conducted by a single researcher, a physical therapist, at the participant’s home. After the informed consent form was signed, data collection began with the application of the CCEB and the health condition characterization questionnaire. Following this, the researcher administered the SF-36 questionnaire, and the participant’s gross motor function was observed using the GMFCS. Each visit lasted approximately 45 minutes. Data collection occurred from November 2020 to March 2021, during the COVID-19 pandemic, with all necessary safety precautions taken, such as wearing gloves and using hand sanitizer.

Data analysis

Statistical analysis was performed using the Statistical Package for the Social Sciences (SPSS), version 26.0 ^® for Windows. Descriptive statistics were used to characterize the sample. Simple linear regression analyses were conducted to evaluate the relation between the predictor variable (GMFCS) and the outcome variables (SF-36 domains), assessing how much gross motor function could explain the variability in the different HRQoL domains. Separate models were run for each SF-36 domain and for the physical and mental component summaries, considering GMFCS Levels I to V. Effect size (d) and study power were calculated based on Portney and Watkins (2009) ²⁰⁰⁹ , with the following reference values for effect size: small (d = R² = 0.10), moderate (d = R² = 0.30), and large (d = R² = 0.50) ²⁰⁰⁹ .

Ethical considerations

The study adhered to Resolution No. 466/2012 of the National Health Council, Ministry of Health. All participants provided informed consent by reading and signing the consent form.

RESULTS

Participant characterization

Initially, 72 individuals registered at the participating rehabilitation center were screened, of which 33 were excluded based on the study’s criteria. Of the 39 eligible participants, nine declined to participate. Therefore, 30 volunteers were included in the study, with an average age of 29.03 years, ranging from 18 to 54 years.

Table 1 presents the sociodemographic characteristics of the participants. Most participants were male, had complete secondary education, received government benefits, lived with their parents, and belonged to lower economic strata.

Table 1.
Characterization of participants regarding sociodemographic data, Diamantina (MG), Brazil

Parameter		Participants n (%)
Gender	Women	13(43.3)
	Men	17(56.7)
Schooling level	No schooling	3(10)
	Incomplete primary education	6(20)
	Incomplete secondary education	3(10)
	Complete secondary education	17(56.7)
	Higher education	1(3.3)
Current occupation	Self-employed	3(10)
	Government beneficiary *	27(90)
Housing status	Independent	2(6.7)
	With partner	2(6.7)
	With parents	26(86.7)
Economic status	B1 **	1(3.3)
	B2 ***	5(16.7)
	C2 ****	9(30)
	D-E *****	15(50)

• ^* Government beneficiary: retired or receives Continuous Cash Benefit (BPC); ^** Economic status B1: average family income of R$ 10,788.56; ^*** Economic status B2: average family income of R$ 5,721.72; ^**** Economic status C2: average family income of R$ 1,894.95; ^***** Economic status D-E: average family income of R$ 862.41.

Characteristics of participants regarding health conditions

Table 2 presents the health condition characteristics of participants. It was observed that half of the participants have spastic-type CP with hemiplegic distribution. Most participants fall into GMFCS Levels II or IV and do not have associated pathologies. Among those with associated conditions, the most frequently reported was epilepsy or seizures.

Table 2.
Characteristics of participants regarding health conditions, Diamantina (MG), Brazil.

Parameter		Participants n (%)
Type of impaired muscle tone	Spastic	15(50)
	Dyskinetic	3(10)
	Mixed	12(40)
Topographic distribution	Hemiplegic	15(50)
	Diplegic	8(26.7)
	Quadriplegic	7(23.3)
GMFCS*	I	6(20)
	II	11(36.7)
	III	3(10)
	IV	9(30)
	V	1(3.3)
Associated conditions	Epilepsy/seizures	5(16.7)
	Bowel and bladder dysfunction	2(6.7)
	Gastrophagic reflux	2(6.7)
	No associated pathologies	21(69.9)
Associated physical complications	Scoliosis	5(16.7)
	Fractures	3(10)
	Contractures	11(36.7)
	No physical complications	11(36.7)

• ^Note:
  * GMFCS: Gross Motor Function Classification System.

In Graph 1 , the average scores for the eight SF-36 domains are shown both individually and grouped into physical and mental health summary scores, for all participants (total group) and categorized by GMFCS levels (I and II versus III to V). When considering the participants as a whole, the lowest averages were observed in the functional capacity and physical aspects domains. This trend was consistent when analyzing the groups by GMFCS level, with lower GMFCS levels corresponding to lower average scores in these domains. Additionally, in the GMFCS I and II group, the emotional aspects domain had the lowest average score among all SF-36 domains. Conversely, when analyzing all participants together, the highest averages were found in the pain and mental Health domains. This pattern was also seen in the GMFCS I and II group. However, for the group with more severe motor limitations (GMFCS III to V), the highest averages were in the mental health and vitality domains.

Graph 1.
Average of the subscales of the Short Form Health Survey and the Gross Motor Function Classification System

Table 3 presents the results of the simple linear regression analysis between GMFCS and the SF-36 domains. It was found that lower GMFCS levels were significantly associated with, and could explain, 37% of the variability in the physical functioning domain score (d = 0.37; power = 0.60) and 22% of the variability in the physical aspects summary score (d = 0.15; power = 0.18). On the other hand, higher GMFCS levels were significantly associated with, and could explain, 15% of the variability in the emotional well-being domain score (d = R² = 0.17; power = 0.20). Gross motor function classification was not able to explain the variability in the other SF-36 domains.

Table 3.
Univariate regression analysis between Gross Motor Function Classification System and Short Form Health Survey domains

GMFCS
Dependent variables	R 2	Β	β	p-value
Physical functioning	0.373	−12.963	−6.11	p=0.000 *
Role functioning/physical	0.124	−9.954	−0.352	p=0.057
Pain	0.28	−4.185	−0.166	p=0.380
General health	0.017	1.426	0.131	p=0.489
Energy/fatigue	0.017	2.431	0.129	p=0.489
Social functioning	0.017	−2.120	−0.129	p=0.489
Emotional well-being	0.146	12.546	0.382	p=0.037 *
Role functioning/emotional	0.002	0.778	0.042	p=0.885
Summary of physical aspects	0.221	−6.313	−0.470	p=0.009 *
Summary of mental aspects	0.049	3.409	0.222	p=0.238

• R ²: adjusted coefficient of determination; B: regression coefficient, β: standardized regression coefficient; ^* Presented p-value<0.05.

DISCUSSION

This study demonstrated that better gross motor function partially explains a higher HRQoL in the physical functioning domain and in the physical aspects summary. Conversely, more compromised gross motor function accounted for a small portion of the higher HRQoL observed in the emotional well-being domain.

The group of Brazilian adults with cerebral palsy (CP) exhibited an above-average perception of HRQoL for both physical and emotional aspects summaries, with higher scores in the pain and mental health domains. The lowest scores were found in the physical functioning and role functioning due to physical health domains. Although this group resides in small/medium-sized municipality, mostly belongs to lower economic strata, rely on government benefits, and lives with their parents, it is notable that similar results have been observed in studies of adults with CP in other countries ^{2021 , 2010} .

For example, Pagliano et al. ²⁰²¹ evaluated HRQoL using the SF-36 in 109 individuals with spastic CP, with an average age of 26 years. Their results indicated that adults with CP generally have a positive perception of their HRQoL. Average scores above 70% were reported for role limitation/physical, pain, general health, social functioning, emotional problems, and emotional well-being; however, lower scores were noted in the physical functioning domain, with an average of 55.4%. These findings are expected, given that motor impairment is a central feature of CP, leading to lower scores in HRQoL domains related to physical functioning.

In our study, the level of gross motor function explained some aspects of HRQoL, particularly the physical aspects summary (with a small effect size), with a stronger emphasis on physical functioning (moderate effect size). It was observed that the more compromised the gross motor function (i.e., higher GMFCS level), the lower the score in the physical functioning domain. A study conducted in Stockholm ²⁰²⁰ , which assessed HRQoL in 61 adults with CP with an average age of 21 years and 2 months, also used the SF-36 and found that physical and mental health scores were comparable to those expected in the general adult population. However, individuals with GMFCS Levels IV and V showed lower scores in the physical functioning domain. Interestingly, the study found an inverse relationship in the emotional well-being domain: individuals with GMFCS Levels I and II reported worse outcomes. According to the authors, individuals with milder disabilities may compare themselves to those without disabilities, leading to lower self-perceived health. Similar findings were reported by Schmidt et al. ²⁰²² , who compared the HRQoL of 198 adults with CP to 593 adults from the general population, concluding that adults with CP present a high capacity for adaptation.

In this study, greater impairment of gross motor function (higher GMFCS level) explained a small portion of the better HRQoL in the emotional problems domain, which aligns with findings from other studies ^{2021 , 2022 , 2020} . For example, Pagliano et al. ²⁰²¹ compared adults with unilateral and bilateral CP and found that individuals with bilateral CP (typically associated with more severe motor impairments) had lower scores in the physical summary compared to the mental summary. On the other hand, those with unilateral CP showed lower scores in the mental component compared to the physical component. The authors suggest that individuals with bilateral CP may be so affected by their physical symptoms that they place less value on mental aspects.

A noteworthy finding in this study is the HRQoL related to pain. Although pain is a common complaint among adults with CP ²⁰¹² , participants in this study reported higher HRQoL scores in the pain domain, along with the mental health summary. Similarly, Sienko ²⁰¹⁸ found a high pain-related HRQoL score (85%) in a sample of 97 young American adults with CP, with GMFCS levels not influencing this result. Thus, this study corroborates the literature, which suggests that while pain is prevalent among adults with CP, it does not directly affect HRQoL in this population ^{2018 , 2020} .

It is important to acknowledge the limitations of our study. Convenience sampling was employed and all 30 adults with CP lived in a medium-sized Brazilian city. Although the findings are consistent with international studies, further research with larger sample sizes is needed, particularly given the effect size and statistical power observed in this study. This study, however, provides valuable data that could inform the sample size calculation for future research. Another limitation is that only adults with preserved verbal communication and understanding were included, meaning the results cannot be generalized to individuals with more severe communication impairments. Furthermore, while the GMFCS is not validated for individuals over 18 years of age, previous studies have demonstrated that it remains a reliable and valid tool for describing gross motor function in adults with CP ²⁰⁰⁶ , and it has been widely used in research on this population ^{2021 , 2010 - 2020} .

Notably, this study aims to stimulate discussion about aspects of CP in adults that remain underexplored in Brazil. Moreover, to the best of our knowledge, this is the first study examining HRQoL in Brazilian adults diagnosed with CP.

CONCLUSION

This study demonstrated a positive association between gross motor function and HRQoL related to physical functioning and physical health limitations in adults with CP living in a small/medium-sized Brazilian municipality. Conversely, a negative association was found between gross motor function and HRQoL in the emotional well-being domain. Although cultural factors may influence HRQoL, the findings of this study are consistent with those of previous international research.

Acknowledgments

Acknowledgments: To CER IV in Diamantina (MG), and to each participant for their willingness to contribute to the study. To UFVJM for the institutional support.

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• Study caried out at the Centro Especializado em Reabilitação (CER IV), in Diamantina (MG), Brasil.
• Financing source:
  nothing to delcare
• Approved by the Research Ethics Committee under CAAE no. 27027419.5.0000.5108.

Publication Dates

• Publication in this collection
  20 Jan 2025
• Date of issue
  2024

History

• Received
  10 Jan 2023
• Accepted
  14 May 2024