Coordinated speech therapy, physiotherapy, and pharmaceutical care telehealth for people with Parkinson disease in rural communities: an exploratory, 8-week cohort study for feasibility, safety, and signal of efficacy.

INTRODUCTION: The potential for coordinated, multidisciplinary telehealth to help connect people with Parkinson disease (PD) in rural areas to PD specialists is crucial in optimizing care. Therefore, this study aimed to test the feasibility, safety, and signal of efficacy of a coordinated telehealth program, consisting of speech therapy, physiotherapy, and pharmaceutical care, for people with PD living in some rural US communities. METHODS: Fifteen individuals with PD living in rural Wyoming and Nevada, USA, participated in this single-cohort, 8-week pilot study. Participants were assessed before and after 8 weeks of coordinated, one-on-one telehealth using the following outcomes: (1) feasibility: session attendance and withdrawal rate; (2) safety: adverse events; and (3) signal of efficacy: Communication Effectiveness Survey, acoustic data (intensity, duration, work (intensity times duration)), Parkinson's Fatigue Scale, 30 second Sit-to-Stand test, Parkinson's Disease Questionnaire - 39, Movement Disorder Society Unified Parkinson's Disease Rating Scale - Part III, and medication adherence. RESULTS: Average attendance was greater than 85% for all participants. There were no serious adverse events and only nine minor events during treatment sessions (0.9% of all treatment sessions had a participant report of an adverse event); all nine cases resolved without medical attention. Although 14 of 16 outcomes had effect sizes trending in the direction of improvement, only two were statistically significant using non-parametric analyses: 30 second Sit-to-Stand (pre-test median=11.0 (interquartile range (IQR)=6.0); post-test median=12.0 (IQR=3.0) and acoustic data work (pre-test median=756.0 dB s (IQR=198.4); post-test median=876.3 dB s (IQR=455.5), p<0.05. CONCLUSION: A coordinated, multidisciplinary telehealth program was safe and feasible for people in rural communities who have PD. This telehealth program also yielded a signal of efficacy for most of the outcomes measured in the study.

Communication disorders in young children with cerebral palsy.

AIM: To test the prediction of communication disorder severity at 5 years of age from characteristics at 2 years for children with cerebral palsy (CP) whose communication is giving cause for concern. METHOD: In this cohort study, 77 children (52 males; 25 females) with communication difficulties and CP were visited at home at 2 (mean 2y 4mo; SD 3mo) and 5 (mean 5y 5mo; SD 4mo) years of age. Information on the type and distribution of motor disorder, seizures, gross and fine motor function, hearing, and vision were collected from medical notes. Non-verbal cognition, language comprehension, language expression, spoken vocabulary, and methods of communication were assessed directly at age 2 years. At 5 years, communication and speech function were rated using the Communication Function Classification System (CFCS), Functional Communication Classification System (FCCS), and Viking Speech Scale (VSS). RESULTS: In multivariable regression models, CP type, Gross Motor Function Classification System level, vision, the amount of speech understood by strangers, non-verbal cognition, and number of consonants produced at age 2 years predicted the CFCS level at age 5 years (R2 =0.54). CP type, Manual Ability Classification System level, amount of speech understood, vision, and number of consonants predicted the FCCS level (R2 =0.49). CP type, amount of speech understood by strangers, and number of consonants predicted the VSS level (R2 =0.50). INTERPRETATION: Characteristics at 2 years of age predict communication and speech performance at 5 years, and should inform referral to speech and language therapy.

Validity of the Communication Function Classification System for use with preschool children with communication disorders.

AIM: To evaluate construct and predictive validity of the Communication Function Classification System (CFCS) for use with preschool children with a range of speech and language disorders. METHOD: Seventy-seven preschool children with speech and language disorders (50 males, 27 females; mean 2y 7mo, standard deviation [SD] 1y) participated in this cohort study. Preschool children had speech and language, language-only, or speech-only disorders. Together with parent input, speech-language pathologists (SLPs) completed the CFCS at time 1. Parents and SLPs then independently completed a validated change-detecting functional communication outcome measure, the Focus on the outcomes of Communication Under Six (FOCUS), three times: at assessment (time 1), at the start of treatment (time 2), and at the end of treatment (time 3). RESULTS: There was a significant negative correlation between CFCS classifications and FOCUS scores at all three measurement points for the ratings by both parents and SLPs (correlations ranged from -0.60 to -0.76). As expected, no correlations between CFCS classifications and FOCUS change scores were statistically significant. INTERPRETATION: This study provides evidence of construct and predictive validity of the CFCS, demonstrating its value as a discriminative tool for use with preschool children with a range of speech and language disorders.

The Effectiveness of Parental Questionnaires in the Assessment of Speech-Language and Auditory Function in Children.

OBJECTIVE: This study investigates the use of a parental questionnaire to determine its effectiveness as a screening tool in identifying speech-language and/or auditory impairments in children. PATIENTS AND METHODS: Parents completed speech-language (n = 36) or audiology (n = 23) questionnaires prior to their child's speech-language and/or auditory evaluations. The speech-language and audiology evaluations were conducted by clinicians at three different universities not familiar with the administration and scoring of the parental questionnaires. A research assistant coded the results of the speech-language and audiology evaluations. Statistical analysis was used to determine if any aspects of the parents' evaluation of their child's speech, language, or hearing correlated with the speech-language pathologists'/audiologists' assessment. The results of the analyses would indicate whether parental reports are a reliable alternative to professionals' assessment. RESULTS: The speech-language questionnaires for children aged 2-5 years revealed the parents' perception of their children speaking 3-word sentences significantly (p < 0.05) corresponded to the children's comprehension and expression skills. The results from the auditory questionnaires revealed that reports of a child's ear pain were (p < 0.05) correlated with auditory dysfunction. CONCLUSIONS: These questionnaires can potentially be used in low-income countries where professional resources are scarce and there are barriers to identifying children with speech-language and/or auditory impairment.

Developing a classification system of social communication functioning of preschool children with autism spectrum disorder.

AIM: Impairments in social communication are the hallmark of autism spectrum disorder (ASD). Operationalizing 'severity' in ASD has been challenging; thus, stratifying by functioning has not been possible. The purpose of this study is to describe the development of the Autism Classification System of Functioning: Social Communication (ACSF:SC) and to evaluate its consistency within and between parent and professional ratings. METHOD: (1) ACSF:SC development based on focus groups and surveys involving parents, educators, and clinicians familiar with preschoolers with ASD; and (2) evaluation of the intra- and interrater agreement of the ACSF:SC using weighted kappa (кw ). RESULTS: Seventy-six participants were involved in the development process. Core characteristics of social communication were ascertained: communicative intent; communicative skills and reciprocity; and impact of environment. Five ACSF:SC levels were created and content-validated across participants. Best capacity and typical performance agreement ratings varied as follows: intrarater agreement on 41 children was кw =0.61 to 0.69 for parents, and кw =0.71 to 0.95 for professionals; interrater agreement between professionals was кw =0.47 to 0.61, and between parents and professionals was кw =0.33 to 0.53. INTERPRETATION: Perspectives from parents and professionals informed ACSF:SC development, providing common descriptions of the levels of everyday communicative abilities of children with ASD to complement the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Rater agreement demonstrates that the ACSF:SC can be used with acceptable consistency compared with other functional classification systems.

Reliability of the Dutch-language version of the Communication Function Classification System and its association with language comprehension and method of communication.

AIM: The aims of this study were to determine the intra- and interrater reliability of the Dutch-language version of the Communication Function Classification System (CFCS-NL) and to investigate the association between the CFCS level and (1) spoken language comprehension and (2) preferred method of communication in children with cerebral palsy (CP). METHOD: Participants were 93 children with CP (50 males, 43 females; mean age 7y, SD 2y 6mo, range 2y 9mo-12y 10mo; unilateral spastic [n=22], bilateral spastic [n=51], dyskinetic [n=15], ataxic [n=3], not specified [n=2]; Gross Motor Function Classification System level I [n=16], II [n=14], III, [n=7], IV [n=24], V [n=31], unknown [n=1]), recruited from rehabilitation centres throughout the Netherlands. Because some centres only contributed to part of the study, different numbers of participants are presented for different aspects of the study. Parents and speech and language therapists (SLTs) classified the communication level using the CFCS. Kappa was used to determine the intra- and interrater reliability. Spearman's correlation coefficient was used to determine the association between CFCS level and spoken language comprehension, and Fisher's exact test was used to examine the association between the CFCS level and method of communication. RESULTS: Interrater reliability of the CFCS-NL between parents and SLTs was fair (r=0.54), between SLTs good (r=0.78), and the intrarater (SLT) reliability very good (r=0.85). The association between the CFCS and spoken language comprehension was strong for SLTs (r=0.63) and moderate for parents (r=0.51). There was a statistically significant difference between the CFCS level and the preferred method of communication of the child (p<0.01). Also, CFCS level classification showed a statistically significant difference between parents and SLTs (p<0.01). INTERPRETATION: These data suggest that the CFCS-NL is a valid and reliable clinical tool to classify everyday communication in children with CP. Preferably, professionals should classify the child's CFCS level in collaboration with the parents to acquire the most comprehensive information about the everyday communication of the child in various situations both with familiar and with unfamiliar partners.

Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence.

This study examined the construct validity of the Autism Classification System of Functioning: Social Communication (ACSF). Participants included 145 parents of children with autism (2-19 years). The degree of convergent and discriminant validity between parent reported ACSF and subscales from Social Responsiveness Scale 2nd edition and Behavior Assessment System for Children, 3rd Edition were examined against a priori hypotheses. We examined construct validity in the entire sample as well as in specific age cohorts. Our findings suggest that ACSF can provide a valid classification system of social communication ability in children with autism 2-19 years of age, and its two subscales may be used to examine different aspects of social communication ability.

Inter-relationships of functional status in cerebral palsy: analyzing gross motor function, manual ability, and communication function classification systems in children.

AIM: To investigate the relationships among the Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) in children with cerebral palsy (CP). METHOD: Using questionnaires describing each scale, mothers reported GMFCS, MACS, and CFCS levels in 222 children with CP aged from 2 to 17 years (94 females, 128 males; mean age 8 y, SD 4). Children were referred from pediatric developmental/behavioral, physiatry, and child neurology clinics, in the USA, for a case-control study of the etiology of CP. Pairwise relationships among the three systems were assessed using Spearman's correlation coefficients (r(s) ), stratifying by age and CP topographical classifications. RESULTS: Correlations among the three functional assessments were strong or moderate. GMFCS levels were highly correlated with MACS levels (r(s) = 0.69) and somewhat less so with CFCS levels (r(s) = 0.47). MACS and CFCS were also moderately correlated (r(s) = 0.54). However, many combinations of functionality were found. Of the 125 possible combinations of the three five-point systems, 62 were found in these data. INTERPRETATION: Use of all three classification systems provides a more comprehensive picture of the child's function in daily life than use of any one alone. This resulting functional profile can inform both clinical and research purposes.

Adaptation, Content Validity and Reliability of the Autism Classification System of Functioning for Social Communication: From Toddlerhood to Adolescent-Aged Children with Autism.

The Autism Classification System of Functioning: Social Communication (ACSF) describes social communication functioning levels. First developed for preschoolers with ASD, this study tests an expanded age range (2-to-18 years). The ACFS rates the child's typical and best (i.e., capacity) performance. Qualitative methods tested parent and clinician perspectives of the ACSF age expansion using content analysis. The ACSF was used twice by parents and professionals for the same child/youth. Reliabilities were assessed using weighted kappa. Content validity supported the ACSF's applicability, clarity, and usability. The ACSF adaptations did not change its original construct. Reliability were calculated from 90 parent and professional Time-1 and Time-2 ratings for children/youth (2.1-15.6 years). Results showed good-to-very good intra-rater agreement (typical) and good inter-rater agreement (capacity).

Developing and validating the Communication Function Classification System for individuals with cerebral palsy.

AIM: The purpose of this study was to create and validate the Communication Function Classification System (CFCS) for children with cerebral palsy (CP), for use by a wide variety of individuals who are interested in CP. This paper reports the content validity, interrater reliability, and test-retest reliability of the CFCS for children with CP. METHOD: An 11-member development team created comprehensive descriptions of the CFCS levels, and four nominal groups comprising 27 participants critiqued these levels. Within a Delphi survey, 112 participants commented on the clarity and usefulness of the CFCS. Interrater reliability was completed by 61 professionals and 68 parents/relatives who classified 69 children with CP aged 2 to 18 years. Test-retest reliability was completed by 48 professionals who allowed at least 2 weeks between classifications. The participants who assessed the CFCS were all relevant stakeholders: adults with CP, parents of children with CP, educators, occupational therapists, physical therapists, physicians, and speech-language pathologists. RESULTS: The interrater reliability of the CFCS was 0.66 between two professionals and 0.49 between a parent and a professional. Professional interrater reliability improved to 0.77 for classification of children older than 4 years. The test-retest reliability was 0.82. INTERPRETATION: The CFCS demonstrates content validity and shows very good test-retest reliability, good professional interrater reliability, and moderate parent-professional interrater reliability. Combining the CFCS with the Gross Motor Function Classification System and the Manual Ability Classification System contributes to a functional performance view of daily life for individuals with CP, in accordance with the World Health Organization's International Classification of Functioning, Disability and Health.

Considering Health Care Needs in a Rural Parkinson Disease Community.

BACKGROUND: People living with Parkinson disease (PD) have multiple health care needs that intensify over time, because the disease is both chronic and degenerative. Past research indicates that issues with mobility, financial constraints, and lack of support networks impede access to health care for people with PD. These challenges are elevated for individuals who live in rural communities due to the lack of local health care professionals and specialists and support resources, and the need to travel to see providers/specialists. The research objective was to have PD community stakeholders identify health care barriers and resources as well as possibilities for improved health care in a rural state. METHODS: Focus groups were conducted in the context of a community-based participatory research (CBPR) approach. Focus group data collection helped create comfort and parity in the discussion, while a CBPR approach allows for authenticity of the findings because members of the community in question are involved as researchers. The responses were recorded and transcribed verbatim. Coding and organizing of themes was completed manually and using NVIVO 10 software. RESULTS: Qualitative analysis revealed three main themes, PD issues, access issues, and stigma. These themes described disease-related stigma and concerns about disease progression and treatment, as well as challenges in accessing information, providers, and support by the PD stakeholders. The study results provided insight into the needs of people living with PD in rural communities. CONCLUSIONS: Rural PD stakeholders proposed the use of technology (e.g., telehealth) to provide support to improve health care for people with PD.

Cerebral palsy and aging.

Cerebral palsy (CP), the most common major disabling motor disorder of childhood, is frequently thought of as a condition that affects only children. Deaths in children with CP, never common, have in recent years become very rare, unless the child is very severely and multiply disabled. Thus, virtually all children assigned the diagnosis of CP will survive into adulthood. Attention to the adult with CP has been sparse, and the evolution of the motor disorder as the individual moves through adolescence, young adulthood, middle age, and old age is not well understood. Nor do we know what happens to other functional domains, such as communication and eating behavior, in adults with CP. Although the brain injury that initially causes CP by definition does not progressively worsen through the lifetime, the effects of CP manifest differently throughout the lifespan. The aging process must inevitably interact with the motor disorder, but we lack systematic, large-scale follow-up studies of children with CP into adulthood and through adulthood with thorough assessments performed over time. In this paper we summarize what is known of the epidemiology of CP throughout the lifespan, beginning with mortality and life expectancy, then survey what is known of functioning, ability, and quality of life of adults with CP. We conclude by describing a framework for future research on CP and aging that is built around the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) and suggest specific tools and approaches for conducting that research in a sound manner.

Using family paradigms to improve evidence-based practice.

PURPOSE: Evidence-based practice (EBP) describes clinical decision making using research, clinical experience, and client values. For family-centered practices, the client's family is integral to this process. This article proposes that using family paradigms, a family science framework, may help elicit and understand client/family values within family-centered EBP. METHOD: This article describes the family paradigms framework: 4 classic paradigms of "closed," "random," "open," and "synchronous." Its applicability to family-centered EBP is proposed using augmentative and alternative communication examples. RESULTS: A family-centered approach to EBP requires families to be an integral part of clinical decision making, but some families may need assistance in enumerating their views and values. Family paradigms (which consider how a family uses its resources of time, space, energy, and material in the pursuit of its goals of control, affect, meaning, and content) may be a way to elicit family values and preferences relevant to clinical decisions. CONCLUSIONS: Family and client values can be incorporated throughout the EBP steps. Considering family paradigms may increase awareness and understanding of how families' views of their goals and resources affect clinical decisions. Further research is needed into both the processes and effectiveness of using family paradigms to conduct family-centered EBP.

Moving research tools into practice: the successes and challenges in promoting uptake of classification tools.

PURPOSE: In this paper, we present our experiences - both successes and challenges - in implementing evidence-based classification tools into clinical practice. We also make recommendations for others wanting to promote the uptake and application of new research-based assessment tools. METHOD: We first describe classification systems and the benefits of using them in both research and practice. We then present a theoretical framework from Implementation Science to report strategies we have used to implement two research-based classification tools into practice. We also illustrate some of the challenges we have encountered by reporting results from an online survey investigating 58 Speech-language Pathologists' knowledge and use of the Communication Function Classification System (CFCS), a new tool to classify children's functional communication skills. RESULT AND CONCLUSIONS: We offer recommendations for researchers wanting to promote the uptake of new tools in clinical practice. Specifically, we identify structural, organizational, innovation, practitioner, and patient-related factors that we recommend researchers address in the design of implementation interventions. Roles and responsibilities of both researchers and clinicians in making implementations science a success are presented. Implications for rehabilitation Promoting uptake of new and evidence-based tools into clinical practice is challenging. Implementation science can help researchers to close the knowledge-to-practice gap. Using concrete examples, we discuss our experiences in implementing evidence-based classification tools into practice within a theoretical framework. Recommendations are provided for researchers wanting to implement new tools in clinical practice. Implications for researchers and clinicians are presented.

Agreement between parents and clinicians on the communication function levels and relationship of classification systems of children with cerebral palsy.

BACKGROUND: Functional classification systems have generally been used by clinicians and recently by parents to classify various functions of children with cerebral palsy (CP). OBJECTIVE: This study evaluated the agreement between clinicians and parents when classifying the communication function of children with CP using the Communication Function Classification System (CFCS). In addition, the relationships between the Gross Motor Function Classification System - Expanded and Revised (GMFCS-E&R), the Manual Ability Classification System (MACS), and CFCS were investigated. METHODS: This study was a cross-sectional study and included 102 children aged 4-18 years with CP and their parents. The parents and clinician classified the communication of children by using the Turkish language version of CFCS. Furthermore GMFCS-E&R and MACS were used for classification only by the clinician. RESULTS: The weighted Kappa agreement between CFCS results of the parents and clinicians was 0.95 (95% CI 0.95-0.96, p < 0.001). GMFCS-E&R levels were highly correlated with CFCS levels (r = 0.78 (95%CI 0.68-0.84, p < 0.001)). MACS and CFCS results were also highly correlated (r = 0.73 (95%CI 0.63-0.81, p < 0.001). CONCLUSION: The child's communication was classified as indicating higher functioning by the parents compared with the clinicians. The excellent agreement between parents and clinicians with the Turkish language version of CFCS for children with CP indicated that parents and clinicians could use the same language while classifying the communication function of children.

Early Predictors and Correlates of Communication Function in Children With Cerebral Palsy.

Birth characteristics and developmental milestones were evaluated as early predictors/correlates of communication in children with cerebral palsy. The hypothesis was that maternal report of child's age for vocal play and first words would predict current functional communication. A case series of 215 children, 2 to 17 years (mean age = 8.2 years, SD = 3.9) with cerebral palsy was recruited from medical practices in 3 Michigan cities. Early developmental data were collected by maternal interview. The child's Communication Function Classification System (CFCS) level was obtained from parent. Predictors of less functional communication included gestational age >32 weeks, number of comorbidities, age of first words after age 24 months, and use of communication methods other than speech. Several birth characteristics and developmental language milestones were predictive of later communication performance for children with cerebral palsy. These characteristics and milestones should trigger referrals for communication evaluations, including speech, language, hearing, and/or augmentative and alternative communication.