Physical functionality of alternative communication resources in people with cerebral palsy: A systematic review

Abstract

BACKGROUND:

Augmentative and Alternative Communication (AAC) systems are used by people with motor disabilities, such as those with cerebral palsy (CP). The assessment of physical functional skills is crucial for appropriately choosing the computer access tool.

OBJECTIVE:

This study aimed to do a systematic literature review addressing the importance of the analysis of physical functional performance for the construction of specific tools to support communication.

METHODS:

The review followed PRISMA guidelines. We searched articles from 2009 to 2021 using three databases (PubMed, Lilacs in Portuguese, and SciELO). Three reviewers extracted the data. Registration was made to PROSPERO. The risk of bias was assessed using the Cochrane Collaboration tool.

RESULTS:

We found 132 articles in the databases. First, we excluded 31 articles because they did not provide evidence for the use of alternative communication in people with CP and did not use high technology resources. We also excluded 57 duplicated articles. At the end of this first step, 44 articles were left, 38 of them were excluded because they are not clinical trials. We selected 6 articles for the final analysis.

CONCLUSIONS:

The systematic review had a positive impact on the precise dissemination of knowledge ensuring comparisons of interventions and articles such as assistive technology programs.

Keywords

Communication aids for disabled physical functional performance assistive technology and devices cerebral palsy review

1. Introduction

The Augmentative and Alternative Communication (AAC) is configured as a subarea of Assistive Technology (AT) that is intended for the communication expansion of individuals with complex communication needs, that don’t communicate by conventional speech or writing. Many tools are used to help people with disabilities, including technological and innovative interfaces such as software, hardware, adapted mouse and keyboards, drivers and vocalizers that allow users to achieve communicative independence and therefore, improve social and personal aspects [1, 2].

People with neuromotor impairment often have many communication difficulties and therefore need the AAC system to assist their interpersonal, learning, and social relationships.

Tools built for the expressive/communicative development of people with motor limitations should consider the physical functional impairment of the assisted subjects, weighing their potentialities and limitations. While addressing the technological possibilities of AAC, the specificities of the assisted population should be considered [3, 4].

One of the pathologies that has high incidence of motor impairment is Cerebral Palsy (CP). The worldwide incidence of CP is 2.0 to 2.5 per 1000 live births and it has remained constant [5, 6]. In developing countries, including Brazil, although studies are precarious, it is estimated that these rates are at least 5.0 per 1000 live births [7]. This is due, among other reasons, to precarious pre and perinatal conditions, such as poor nutritional status of the mother or failure in hospital service.

Cerebral palsy is the neurological disorder that most affects the developing nervous system. It is characterized by a set of motor disorders that affect movement and posture, resulting from non-progressive encephalopathy with varied neuromotor impairment [8, 9].

Among the difficulties presented by these individuals are those related to communication. They are normally individuals with complex communication needs and for this reason they need a set of tools and strategies to meet daily communicative challenges. The type of tool will depend on several factors such as age, cognitive level, language level, visual and hearing ability, attention, comprehension, type and severity of physical functional impairment, among others [10].

AAC systems can replace conventional speech, such features can vary and may be low or high tech. Low-tech examples include symbols, boards (for instance, Picture Exchange Communication System), pictures, physical gestures. In high technology there are text synthesizers, electronic devices, speech generating devices, software, technological interfaces, etc. [11, 12, 13].

People using AAC need to be supported by a communication partner to improve the speed and accessibility of communication. There has been a great deal of research in this area which shows that AAC is effective for improving language development and learning [14, 15, 16]. The implementation of AAC requires, in addition to technical knowledge, wide experience with assistance to persons with disabilities [17].

The challenge begins with the process of assessing people with disabilities. The assessment of physical functional skills is crucial for choosing the appropriate access tool. Instruments that evaluate functions or functional skills do not check motor performance. Many practitioners have used the ICF (International Classification of Functioning, Disability and Health) which increases the quality of patient data [18]. There are other instruments that assess communication skills and that also assess the structure and function of the body, they are: Manual Ability Classification System (MACS), Gross Motor Function Classification System (GMFCS), and Communication Function Classification System [19, 20].

The assessment of physical functional skills is especially important in choosing hardware or other communication resources. The assessment identifies a range of possibilities for subjects with motor disabilities [21, 22]. Through AAC the subject can broaden communicative exchanges, acquire new conversational skills and thus expand the range of interlocutors in various social contexts.

The present study is, therefore, a systematic review of the literature addressing as its main focus the importance of the analysis of physical functional skills for the development of hi-Tech AAC tools. The analyses contained in this work will contribute to the expansion of research aimed at the communicative development of people with motor disorders in the area of assistive technology, especially the AAC, serving as a guide for advances in the development of assisted subjects in diverse social spheres.

2. Material and method

Systematic reviews synthesize evidence with the combination of various sources, using systematic methods to reduce the risks of bias [23, 24]. Following the guidelines of PRISMA [25], a systematic review was performed to identify the relationship between physical functional impairment and the effectiveness of technology resources assisted in the communication of people with cerebral palsy. The use of PRISMA guidelines, since 2009, has made it possible to improve or report on systematic review and their conceptual and practical advances. PRISMA, in this review, ensure that the findings were relevant to current public health and policy context with regards to alternative communication and cerebral palsy.

2.1 Registration and protocol

The registration was made at PROSPERO, a basis for recording systematic review protocols, which is maintained by the Centre for Reviews and Dissemination (CRD) at the University of York. Base access can be done by link: https://www.crd.york.ac.uk/prospero/. The protocol of this review accessed by the registry CRD42019128594 https://www.crd.york.ac.uk/prospero/export_record_pdf.php (S1 Prospero).

2.2 Search strategy

From the systematic reviews it is possible to obtain reliable syntheses of the evidence on various subjects [26]. Data was collected from January 2018 to February 2021. The main research issue was: What is the correlation between physical functional impairment with the effectiveness of technology resources assisted in the communication of people with cerebral palsy?

To answer the question of the research, a systematic review of the literature was performed. The research was conducted by three authors/evaluators who discussed the crossing of the following descriptors: in Portuguese corresponding in English: “cerebral palsy” and “communication aids for disabled”, thus the bilingual vocabulary (English/Portuguese) was used – Descriptors in Health Sciences (DeCS), available in the PubMed databases (US National Library of Medicine), Latin American and Caribbean Literature on Health Sciences (Lilacs) and the Scientific Electronic Library Online (SciELO).

A prospective protocol developed for this systematic review in the International Registry of Systematic Reviews (PROSPERO) was requested: 128594 (S1).

Articles of clinical trials highlight the use of augmentative and alternative communication in people with cerebral palsy and the ones that made use of high-tech resources were selected to choose the studies. The clinical trials used on the systematic review were studies using AAC resources with variables of physical functionality on cerebral palsy patients. The selected studies were from 2009 to February 2021, the justification for this period is because 2009 is a mark of sophisticated voice output or speech generating devices for augmentative and alternative communication (AAC) [27]. After 2009 the literature starts to show physical functionality to decide AAC resources. Branson and collaborators (2009) published “The use of augmentative and alternative communication methods with infants and toddlers with disabilities: A research review”. Before that, there are no relevant studies to be included. The search strategy is shown in the PRISMA flowchart in Fig. 1, and the PRISMA checklist (S2) is monitored.

Figure 1.

PRISMA flow diagram, with the search strategy of the articles evaluated in the study.

2.3 Eligibility criteria

The articles that portrayed the functional effectiveness of the use of technological resources for the communication of people with cerebral palsy were elected as inclusion criteria. The use of technological resources of AAC was considered as a primary focus, while the physical functional relationship of the subjects and other aspects such as quality of life, communicative skills and social interaction were considered as secondary focus for analysis of articles. Another criterion for the selection of studies was to include only clinical trials published from 2009 to February 2020.

Exclusion criteria were taken from studies that were not clinical trials, which did not relate functionality and augmentative and alternative communication. Inclusion and exclusion criteria will be presented in Table 1.

Table 1
Eligibility criteria

Inclusion criteria	Exclusion criteria
Studies identified the functional effectiveness of the use of technological	Studies that were not a clinical trial
resources to communicate with people with cerebral palsy
Only published clinical trials from year 2009 until February 2021	Article with only the abstract available
Full text published article

2.4 Data extraction

At first, individual readings of titles were performed, and later abstracts, independently, without identifying the authors or platforms used for the publication of the studies. Two researchers were commissioned for selection, following the established criteria. A third researcher participated in the event of disagreements between reviewers. The eligibility criteria were followed.

After the analysis of the studies that met the criteria, the following data was obtained: reference, title, authors, year, description of the research subjects, clinical conditions related to the diagnosis of CP, AAC resources used, intervention maintenance of the methods used after clinical intervention and results obtained. After careful selection only articles that corresponded with the inclusion criteria were chosen and selected for final analysis [28, 29].

The articles were exposed to in-depth readings and thorough selective analyses. The data was extracted with the objective of evaluating articles in the literature that treated the functional effectiveness of the use of technological resources to the communication of people with cerebral palsy. The use of technological resources of AAC was considered as a primary focus, while the physical functional relationship of the subjects and other aspects such as life quality, communicative skills and social interaction were considered as secondary focus for analysis of articles.

The risk of bias was evaluated using the Cochrane Collaboration tool by two reviewers [30]. For the evaluation five domains were discussed: sequence generation (selection bias), allocation sequence concealment (selection bias), blinding of participants and personnel (performance bias), blinding of outcome assessment (detection bias), incomplete outcome data (attrition bias), selective outcome reporting (reporting bias) and other potential sources of bias. The items analyzed were classified according to the scale described in the Cochrane Collaboration tool as low risk, high risk, or uncertain risk (Unclear risk, Fig. 2). The items analyzed were classified according to the scale described in the Cochrane Collaboration tool as low risk, high risk, or uncertain risk (Unclear risk, Fig. 2).

Figure 2.

Unclear risk. Risk of bias. (Caption: Green $=$ Low Risk of bias. Yellow $=$ Uncertain. Red $=$ High Risk of bias).

2.5 Quality appraisal

In order to evaluate the quality of the included studies, the PRISMA checklist with a maximum score of 27 for texts was used [25, S2]. Not all items were applicable, so the scores were reported in global percentages of the applicable PRISMA items.

Table 2
Reason for the exclusion of the articles

Articles excluded (reference no. Appendix I)	Reason for exclusion
31 [1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31]	Studies excluded because they do not evidence the use of alternative communication in people with cerebral palsy and do not use high-tech resources
57 [1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 18, 19, 21, 22, 23, 24, 26, 27, 28, 29, 30, 3132, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61]	Duplicate studies in two or more electronic databases
38 [31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68]	Studies that were not a clinical trial

Table 3

Characteristics of the studies

N ${}^{\circ}$ of the study	Authors/year reference	Subjects	Physical/functional ability	Tool used
Study 1	Santos et al., 2015 [31]	2 subjects diagnosed with cerebral palsy.	Subject 1: communicates by means of a tool built to be kicked, coupled with a device that functions as a sensor. Subject 2: used the CA2JU software’s virtual keyboard.	Software CA ${}^{2}$ JU Acelerado; CA ${}^{2}$ JU Ilustrated.
Study 2	Bosco et al., 2013 [32]	3 subjects diagnosed with cerebral palsy.	A tool driven by hand pressure. (Microswitch pressure).	Software Clicker 5 An interface connects the microswitch to the computer and to the software.
Study 3	Lesperance et al., 2011 [33]	2 subjects diagnosed with dyskinetic cerebral palsy.	It uses bilaterally to the middle of the humeral shaft; the back of the middle axis between the ulna and the radius; and for subsequent head movements in the lambda bone.	Hardware. Biomechanical series – accelerations, Triaxial Accelerometers (Freescale, model MMA7260Q1).
Study 4	Shih et al., 2010 [34]	2 subjects diagnosed with cerebral palsy.	Subject 1: limited hands control capability, wrist control. Subject 2: Using the right hand to move a standard mouse.	software Dynamic Assisting Programive Program (EDPAP).
Study 5	Shih, 2014 [35]	3 subjects diagnosed with cerebral palsy.	Subject 1: Tool: keyboard and use of an adapted mouse. Subject 2: Use of thumb for mouse and keyboard handling. Subject 3: Adapted mouse and keyboard, two-handed movement.	On-Screen Keyboard (OSK) software; DTAP software (Dynamic Typing Assistive Program); Computer typing evaluation software (CTES).
Study 6	Shih, 2011 [36]	2 subjects diagnosed with cerebral palsy.	Subject 1: The person could move the scroll bar and press the left mouse button. Subject 2: The person could move a standard mouse with his/her right hand laboriously.	Dynamic Drag-and-Drop Assistive Program (DDnDAP). Software of computer evaluation DnD.

3. Results

During the research, 132 articles were found in the databases. In the first stage, the titles and abstracts of the works were read. After this reading 31 articles (Table 2) were excluded because they did not evidence the use of augmentative and alternative communication in people with cerebral palsy (CP) and for not using high-tech features. Fifty-seven articles that were duplicated in two or more electronic databases were also excluded (Table 2). At the end of this first stage, 44 articles remained, which were read in full, of these 38 were excluded because they were not clinical trials (Table 2). In the end, a total of 6 (six) articles were selected for final analysis (Table 3).

All selected individuals were diagnosed with cerebral palsy. In the articles describing the clinical conditions of the subjects, cerebral palsy had variation between mixed, discinethics and spastic types and degrees of impairment that varied between moderate and severe. Prior to clinical intervention, the users described in the articles did not make use of high-tech augmentative and alternative communication resources. None of the subjects made use of oral language, they communicated through contextually internalized gestures by their caregivers and people of their social settings. None of the studies had a control group or placebo.

The analyzed articles feature the use of high-tech augmentative and alternative communication features, such as software, hardware, and pressure microswitch, all features are built to be used on computers, laptops, Tablets, and/or smartphones.

Table 3 describes the studies selected after screening with data corresponding to: author/year of the study, sample of selected subjects, functional physical ability and tool used for communication.

In most of the studies analyzed, the tools used for communication do not describe the functionality and the importance of the physical-functional relationship for selecting high-tech resources. Of the few studies that describe the evaluation of these aspects and possibilities accessible to their motor conditions, all constructs were idealized and constructed thinking about the expansion of communication.

Therefore, although the studies do not describe the importance of physical functional impairment, as a primary focus of their research, indirectly, all studies address beneficial values in relation to aspects of motor functionality for the expressive/communicative effectiveness of assisted subjects.

4. Discussion

The studies present in this systematic review address the efficiency of the use of technological resources for augmentative and alternative communication that include innovative and accessible ways to help the communication of subjects who by some motor/expressive limitation cannot communicate through the usual forms.

In study 1, the construction of the tools CA ${}^{2}$ JU Illustrated and CA ${}^{2}$ JU Accelerated, a test group is present, for analysis of the apparatus built. A group with 10 users without disabilities for evaluation of the illustrated CA ${}^{2}$ JU, and another group of 8 users for the Accelerated CA ${}^{2}$ JU. The test assesses whether the software is more effective than communication boards. The software test showed an average efficiency of 38% in grammatical expansion and ease of access. In both access modes, greater efficiency and grammatical expansion were used in the software than in the communication boards [31]. From the articles analyzed in this study, only the CA2JU presented developed in its configuration, analyses using test groups.

For the construction of the tools, the articles analyzed in this research considered determining factors for the adaptation of standardized resources: their unified projection for the dominant population; limitation for the use of conventional tools by people who present motor disorders regarding the movements required for their execution; limitations for identifying small targets and the difficulties for targeting interfaces that allow triggering the command preceded by the click.

For the selection of alternative resources and their implementation, it is necessary to build proposals that allow the researcher to have a clear and objective visualization of the skills and limitations of subjects with motor disabilities. The elaboration of accessible and functional tools depends directly on an expanded view that considers the specificities of the assisted subjects [38].

The International Classification of Functionality (ICF) considers aspects of the functionality and inability of people with motor disorders [18], in a “biopsychosocial” approach. It interprets functionality and disability with aspects directed to the analysis of the biological, individual and social perspective of these individuals. As for functionality, the functional and structural integrity of what the subject is able to do is observed, while disability refers to the disability and limitations of these aspects [37]. The evaluation of these categories contributes to the elaboration of therapeutic, scientific and educational proposals that help the understanding about communicative and linguistic limitations due to the functionality of the subject. The evaluation of these categories contributes to the elaboration of therapeutic, scientific and educational proposals that help the understanding about communicative and linguistic limitations due to the functionality of the subject.

In short, for the selection of constructs, the approaches used were based on classifying tools in the process of construction and implementation, elaborated prior to the method of evaluating the motor and communicative conditions of the subject.

In study 2, the analysis of the outcomes of the research points out that the structured actions for the development of communication of subjects with cerebral palsy take into account the physical functional specificities of people with motor limitations [32]. To sum up, it is noticeable in this study, that there is a need to improve the issues related to the development of interfaces that have greater tolerance to the specific movements of each subject.

In this systematic review, of the analyzed articles, the research built in study 3 stood out for contemplating in its dynamics the resourcefulness of the movements of the subjects considering specific extremities: bilaterally in the middle of the humerus rod; to the back of the middle of the axis between ulna and radio; and for the later movements of the head, in the lambda to capture answers [33]. Although, the study addresses questions that analyze the movements described, it does not present amplitude in relation to the evaluation of the specific demands of individuals (functionality and disability), limiting itself to evaluating questions to answer the dynamics of the individuals constructs already idealized.

Studies 4, 5 and 6 presented motor-driven devices, aimed at the upper limbs highlighting the use of hands and click, triggered by the thumb and rotational movements. The description of the studies refers to the selected subjects as fit for the execution of the required motor commands (basic ability to operate the mouse cursor accurately), so the subjects are designated for the use of the tools, without description evaluations and the motor specificities are considered before the construction of the instruments [34, 35, 36].

In the development of tools adapted to meet and improve the communicative demands of people with motor disorders, positive and negative factors are weighted. They are considered disadvantage: the standardized and specific design, designed for the preparation of constructs; adaptation costs, which are high compared to standard devices; the design configuration of adapted tools that can cause strangeness to users.

In contrast, the advantages for the construction of systems are greater, such as: the opportunity offered to subjects in additional options in terms of assistive technology; the tools built cover a range of possibilities for subjects in different social contexts to achieve communicative independence and consequently improvement of aspects aimed at performing activities of daily living and personal achievements.

5. Conclusion

The analyzed studies present important results regarding the development of technological innovations accessible to the expressive/communicative, linguistic and motivational needs of people with motor limitations. Although they do not describe the importance of physical functional impairment, they discuss viable paths for the manipulation of the tools constructed in relation to the aspects of motor functionality for the expressive/communicative effectiveness of assisted subjects.

The systematic review had a positive impact on the precise dissemination of knowledge ensuring comparisons of interventions and articles. PRISMA was used in many reviews and it was associated with higher quality reviews [33].

The present study shows the address of the efficiency of the use of technological resources for AAC must be connected to expressivity, linguistic expansion, motivational and functionality during the use of technology resources. The paths for technological resources have not considered the individuality of the patients. In view of the arguments presented and the limitations of this study, it is noted the need to expand studies for the referral of new research, addressing aspects such as: expansion of assistive technology programs to an extension that reaches participants with diversified motor limitations; therapeutic and social educational contexts; interfaces that adopt an analysis of the satisfaction of participants, caregivers, parents, teachers, therapists and people from their social circles to determine accessible values and possibilities in order to improve the life quality of people with multiple deficiencies.

Author contributions

CONCEPTUALIZATION: Rosana CN Givigi, Edênia M Cunha, Jerriany TP Souza and Lillian M Oliveira

METHODOLOGY: Rosana CN Givigi, Edênia M Cunha, Jerriany TP Souza and Lillian M Oliveira

DATA CURATION: Edênia M Cunha, Jerriany TP Souza and Lillian M Oliveira

FORMAL ANALYSIS: Rosana CN Givigi, Edênia M Cunha, Jerriany TP Souza, Lillian M Oliveira and Solano SF Dourado

WRITING ORIGINAL DRAFT: Jerriany TP Souza and Lillian M Oliveira

REVISION FOR IMPORTANT INTELLECTUAL CONTENT: Rosana CN Givigi, Edênia M Cunha, Jerriany TP Souza, Lillian M Oliveira and Solano SF Dourado

PROJECT ADMINISTRATION: Edênia M Cunha, Jerriany TP Souza, Lillian M Oliveira and Solano SF Dourado

RESOURCES: Rosana CN Givigi, Edênia M Cunha, Jerriany TP Souza, Lillian M Oliveira and Solano SF Dourado

SUPERVISION: Rosana CN Givigi

Supplementary data

The supplementary files are available to download from https://dx-doi-org.web.bisu.edu.cn/10.3233/TAD-200299.

Footnotes

Acknowledgments

The authors have no acknowledgments.

Conflict of interest

None to report.

Appendix I: Papers excluded from the review

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[18] Dahlgren Sandberg A, Smith Martine LM. An analysis of reading and spelling abilities of children using AAC: Understanding a continuum of competence. Augment Altern Commun. 2010; 26(3): 191–202. doi: 10.3109/07434618.2010.505607.

[19] Johnston SS, Davenport L, Kanarowski B, Rhodehouse S, McDonnell AP. Teaching sound letter correspondence and consonant-vowel-consonant combinations to young children who use augmentative and alternative communication. Augment Altern Commun. 2009; 25(2): 123–135. doi: 10.1080/07434610902921409.

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[26] Hörmeyer I, Renner G. Confirming and denying in co-construction processes: a case study of an adult with cerebral palsy and two familiar partner. Augment Altern Commun. 2013; 29(3): 259–271. doi: 10.3109/07434618.2013.813968.

[27] Hedvall P, Rydeman B. An activity systemic approach to augmentative and alternative communication. Augment Altern Commun. 2010; 26(4): 230–241. doi: 10.3109/07434618.2010. 528795.

[28] Barker RM, Akaba S, Brady NC, Thiemann-Bourque K. Support for AAC use in preschool, and growth in language skills, for young children with developmental disabilities. Augment Altern Commun. 2013; 29(4): 334–346. doi: 10.3109/074346 18.2013.848933.

[29] Broberg M, Ferm U, Thunberg G. Measuring responsive style in parents who use AAC with their children: development and evaluation of a new instrument. Augment Altern Commun. 2012; 28(4): 243–253. doi: 10.3109/07434618. 2012.740686.

[30] Meder AM, Wegner JR. iPads, mobile technologies, and communication applications: a survey of family wants, needs, and preferences. Augment Altern Commun. 2015; 31(1): 27–36. doi: 10.3109/07434618.2014.995223.

[31] Clarke M, Bloch S, Wilkinson R. Speaker transfer in children’s peer conversation: completing communication-aid-mediated contributions. Augment Altern Commun. 2013; 29(1): 37–53. doi: 10.3109/07434618.2013.767490.

[32] Klang N, Rowland C, Fried-Oken M, Steiner S, Granlund M, Adolfsson M. The content of goals in individual educational programs for students with complex communication needs. Augment Altern Commun. 2016; 32(1): 41–48. doi: 10.3109/07434618.2015.1134654.

[33] Manzini MG, Martinez CMS, Almeida MA. Programa Individualizado de comunicação alternativa para mães de crianças com paralisia cerebral não oralizadas. Distúrb. Comun. 2015; 27(1): 26-38.

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Physical functionality of alternative communication resources in people with cerebral palsy: A systematic review

Abstract

BACKGROUND:

OBJECTIVE:

METHODS:

RESULTS:

CONCLUSIONS:

Keywords

1. Introduction

2. Material and method

2.1 Registration and protocol

2.2 Search strategy

Table 1 Eligibility criteria

Table 2 Reason for the exclusion of the articles

4. Discussion

5. Conclusion

Author contributions

Supplementary data

Footnotes

Acknowledgments

Conflict of interest

Appendix I: Papers excluded from the review

References

Table 1
Eligibility criteria

Table 2
Reason for the exclusion of the articles