Nothing About Patients Without Patients: More Than Just a Catchphrase!

Health care is sometimes called a "team sport," yet patients were traditionally not considered to be "on the team" in medicine. In 2001, the Institute of Medicine (now National Academy of Medicine) published its seminal book Crossing the Quality Chasm, in which patient-centered care was identified as 1 of 6 quality aims. Many organizations have since included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. In the past 10 years, the focus on patient-centered care has expanded in the Kaiser Permanente, Southern California region to include innovative ways for patients to collaborate with health care teams to codesign improvement efforts that are truly patient-centered. We will describe 3 important approaches that have greatly increased the patient-centeredness of our organization: individual patient approaches; adding patients onto health care teams; and effectively utilizing patient and family advisory councils. We will provide examples of how all health care organizations can better partner with their patients to improve their ability to provide higher quality, safer, more equitable, and affordable health care. The slogan "Nothing About Patients Without Patients" was an early rallying cry of the patient engagement movement. It conveyed the idea that as with everything else in our society, patients now expect to have a say in the design and implementation of their care. We show that this is not only possible, but also highly effective and even necessary to improving care.

Long-Term Outcomes for Individuals With Childhood Apraxia of Speech.

PURPOSE: The study's primary aims were to describe the long-term speech outcomes for adolescents and young adults with a history of childhood apraxia of speech (CAS) and to examine the association of persistent speech sound errors with measures of literacy skills, phonological processing, motor speech production, and parent report of early motor difficulty. METHOD: Data from a large longitudinal 25-year study were used to explore outcomes for 32 individuals with a history of CAS, ages 12;6 (years;months) to 25 years (M = 17.4, SD = 4.7). Persistent and nonpersistent groups were compared on decoding, phonological processing, multisyllabic word repetition, diadochokinetic rate, and parent report of motor involvement. Parametric (Welch's t tests) and nonparametric tests (Wilcoxon and Fisher exact tests) were used to identify differences between the groups' distributions. Developmental trajectories of speech production were plotted. RESULTS: Outcomes for individuals with CAS are highly variable, with some demonstrating speech sound errors into adolescence and young adulthood. Speech sound errors were primarily on later developing sounds. Persistence was significantly associated with early motor difficulties. Difficulties with multisyllabic words, phonological processing, and literacy were often present regardless of persistence or nonpersistence of speech errors. CONCLUSIONS: Children with CAS are at risk for persistent speech sound errors into adulthood. For children showing limited progress with more traditional speech therapy, alternative interventions should be explored. Individuals with persistent speech sound errors are more likely to have a history of early motor deficits. Regardless of persistence, participants with CAS demonstrated ongoing weaknesses in literacy, phonological processing skills, and complex speech production tasks.

Analysis of CEPH-accredited online public health doctoral programs and MPH degree holder demand.

Introduction: The number of doctoral programs to train future public health leaders is critical in meeting the demand of global health challenges in the 21st century. Ten United States online public health doctoral programs accept only a fraction of interested learners. Methods: This research examines the launch of the first online public health doctoral program, accredited by the Council on Education for Public Health, and compares nine similar programs that have followed in the ensuing 12 years. Results: Survey results highlight the demand by Master of Public Health degree holders for online public health doctoral programs; 84.11% of survey respondents indicated an interest in obtaining a doctoral degree. Discussion: If we strive to answer the question posed by the Institute of Medicine in 2003, "Who will keep the public healthy?" then we need to provide education that is accessible, efficient and equitable for interested learners, most of whom are turned down by online public health doctoral programs that have limited capacity.

Success of Patient and Family Advisory Councils: The Importance of Metrics.

Hospital Patient and Family Advisory Councils have been around for over 40 years. Yet, their adoption is waning with only slightly more than 50% of hospitals fielding Councils, which are composed of patient and family volunteers, who provide feedback to hospital staff. Demonstrating the value of Councils is critically important to their success and sustainability. Hospitals can ensure Council success by adopting these initiatives: (1) Highlight the importance of measuring program impacts to Council liaisons and members, (2) Educate members and staff about the three types of impacts defined by the Agency for Healthcare Research Quality, (3) Describe the steps to ensure that the value of the Council is well documented, and (4) Provide tools and training for the Council and staff to conduct robust measurements and analysis. When Councils measure their impact, their value to hospitals and leadership will increase.

The association of prenatal cocaine exposure with expressive and receptive language skills, phonological processing and reading ability at age 17.

OBJECTIVE: Prenatal cocaine exposure (PCE) has been associated with small but significant effects on language development in childhood and early adolescence. This study examined whether this association persists into later adolescence and what relationship language skills may have with reading proficiency in this population. METHODS: Enrolled were 338 (167 with PCE, 171 with NCE or no cocaine exposure) 17-year-olds recruited at birth who, together with their current caregiver, were seen as part of a 17-year follow-up. Participants were given assessments of reading achievement (WIAT-III), receptive and expressive language (CELF-IV), and phonological processing (CTOPP). Relationships between PCE status and language outcomes were modeled using multiple linear regression controlling for environmental and caregiver factors, and other prenatal substance exposures. RESULTS: Adolescents with PCE scored lower in areas of phonological processing and reading related skills compared to adolescents with NCE. PCE by sex interactions were identified on language, memory and spoken language comprehension, with lower scores for girls with PCE compared to girls with NCE. CONCLUSION: These findings suggest the persistence of PCE's relationship with phonological awareness well into adolescence. PCE was also associated with lower scores on measures of skills related to reading ability, which may be a manifestation of the observed deficits in phonological processing.

Reading Skills in Children With Suspected Childhood Apraxia of Speech and Children With Reading Disorders: Same or Different?

PURPOSE: The primary aim of this study was to compare decoding and literacy-related skills of children with suspected childhood apraxia of speech (sCAS) to children with reading disorders (RD) and no history of speech sound disorder (RD-no SSD) to determine if the groups differ in decoding and the endophenotypes that contribute to RD. We also explored the association between language impairment (LI) and decoding and literacy-related skills within the participant group with sCAS. METHOD: Participants were school-age children and adolescents, 8-14 years of age, with a diagnosis of sCAS (n = 13) or RD-no SSD (n = 16). The sCAS and RD-no SSD groups were compared on measures of single-word decoding, oral language, motor-speech skills, phonological processing, and speech-in-noise perception, employing t tests and analysis of covariance. The sCAS + LI and sCAS-only groups were compared on similar measures using t tests. RESULTS: Compared to the RD-no SSD group, the sCAS group performed significantly worse on measures of phonological processing, multisyllable word repetition, diadochokinetic rate, and speech-in-noise perception. The groups did not differ on measures of single-word decoding, with mean scores for both groups falling below average. All participants with sCAS + LI demonstrated deficits in literacy and literacy-related skills compared to a smaller percentage of the sCAS-only group. CONCLUSIONS: Children with sCAS and children with RD-no SSD demonstrate similar impairments in literacy. However, the endophenotypes underlying these difficulties can differ between the groups. Deficits in skills needed for literacy may require specifically tailored interventions to address reading difficulties for children with sCAS, especially for those with comorbid LI.

Preschool blood lead levels, language competency, and substance use in adolescence.

BACKGROUND: Elevated lead levels in children are a persistent public health problem, particularly in urban areas in the United States, yet few prospective studies have examined the association of childhood lead levels with substance use in adolescence. OBJECTIVES: To determine the association of early lead levels with adolescent substance use and whether childhood IQ, language skills, and externalizing (aggressive and disruptive) behavior mediate the association, controlling for confounding biological and environmental factors. METHODS: The participants (N = 265) were a subsample of a prospective birth cohort study on the developmental effects of prenatal cocaine exposure in the Midwest United States. Blood lead levels (BLL) were assessed at age 4, IQ at age 11, language skills and externalizing behavior at age 12, and substance (alcohol, tobacco, marijuana) use and substance use-related problems at age 15. Biologic assays (hair, urine, bloodspots), along with self-report, were utilized to determine adolescent substance use. Path analyses were conducted to examine the direct and indirect associations of BLL with adolescent substance use. RESULTS: The children's mean BLL at 4 years of age was 7.07 (SD = 4.12) µg/dL. Approximately 31% of adolescents used tobacco or marijuana, 40% used alcohol, and 23% reported experiencing substance use-related problems at age 15.7 (SD = 0.28). Elevated BLL was related to a higher likelihood of substance use. Childhood language skills fully mediated the relationship of BLL with substance use-related problems. IQ was related to neither substance use nor substance use-related problems. DISCUSSION: Elevated BLL in preschool years is a risk factor for adolescent substance use and related problems. Early screening and intervention for language impairment may reduce substance use-related problems.

Psychosocial Comorbidities in Adolescents With Histories of Childhood Apraxia of Speech.

Purpose Adolescent psychosocial outcomes of individuals with histories of childhood apraxia of speech (CAS) were compared to outcomes of individuals with histories of speech sound disorders (SSD) only and SSD with language impairment (LI). It was hypothesized that individuals with more severe and persistent disorders such as CAS would report poorer psychosocial outcomes. Method Groups were compared using analyses of variance on a psychosocial assessment battery that included measures of hyperactivity and inattention, anxiety, depression, internalizing and externalizing behaviors, thought problems, and social outcomes. Results Results revealed significant group differences on self-report of social problems and parent report of hyperactivity, thought problems, and social problems at adolescence. Compared to the SSD-only group, the CAS group had significantly higher parental ratings of hyperactivity and social problems in adolescence. The CAS and SSD + LI groups did not differ on psychosocial measures, possibly due to the high rate of comorbid LI in the CAS group. The CAS group also had more individuals who scored in the borderline/clinical range on self-report of social problems than the SSD-only group. The CAS group did not differ from the SSD + LI group in the number of participants scoring in the borderline/clinical range on measures. Conclusions Individuals with histories of CAS demonstrate increased rates of social problems and hyperactivity based on parent ratings compared to adolescents with histories of SSD only; however, most do not score within the clinical range. The persistence of speech sound errors combined with self-reported and parent-reported social difficulties suggests that speech-language pathologists should be sensitive to the social and emotional impact of CAS and make appropriate referrals to mental health professionals when warranted.

Association between genes regulating neural pathways for quantitative traits of speech and language disorders.

Speech sound disorders (SSD) manifest as difficulties in phonological memory and awareness, oral motor function, language, vocabulary, reading, and spelling. Families enriched for SSD are rare, and typically display a cluster of deficits. We conducted a genome-wide association study (GWAS) in 435 children from 148 families in the Cleveland Family Speech and Reading study (CFSRS), examining 16 variables representing 6 domains. Replication was conducted using the Avon Longitudinal Study of Parents and Children (ALSPAC). We identified 18 significant loci (combined p < 10-8) that we pursued bioinformatically. We prioritized 5 novel gene regions with likely functional repercussions on neural pathways, including those which colocalized with differentially methylated regions in our sample. Polygenic risk scores for receptive language, expressive vocabulary, phonological awareness, phonological memory, spelling, and reading decoding associated with increasing clinical severity. In summary, neural-genetic influence on SSD is primarily multigenic and acts on genomic regulatory elements, similar to other neurodevelopmental disorders.

Feature-driven classification reveals potential comorbid subtypes within childhood apraxia of speech.

BACKGROUND: Childhood apraxia of speech (CAS) is a neurodevelopmental disorder with heterogeneous communication and other comorbid manifestations. While previous studies have characterized speech deficits associated with CAS, few studies have examined variability in reading and language and/or other developmental comorbidities. We sought to identify comorbid subgroups within CAS that could be clinically relevant as well as genetically distinctive. METHODS: In a group of 31 children with CAS and 8 controls, we performed hierarchical cluster analysis utilizing measures of articulation, vocabulary, and reading. We also conducted a chart review of the children with CAS to examine other clinical characteristics in these children and their association with subgroup membership. RESULTS: We identified 3 comorbid subgroups within CAS of varying severity. The high severity subgroup was characterized by poor reading and vocabulary, and the moderate severity subgroup by poor reading and non-word repetition but average vocabulary, compared to the mild severity subgroup. Subgroups were indistinguishable with respect to speech sound production, the hallmark of CAS, all demonstrating poor articulation. Children in the most severe subgroup were more likely to have early problems feeding (p = 0.036). CONCLUSIONS: Children with CAS may potentially be classified into comorbidity groups based on performance on vocabulary and reading measures, providing additional insight into the heterogeneity within CAS with implications for educational interventions.

Examining the Role of Language in Play Among Children With and Without Developmental Disabilities.

Purpose Play is a critical aspect of children's development, and researchers have long argued that symbolic deficits in play may be diagnostic of developmental disabilities. This study examined whether deficits in play emerge as a function of developmental disabilities and whether our perceptions of play are colored by differences in language and behavioral presentations. Method Ninety-three children participated in this study (typically developing [TD]; n = 23, developmental language disorders [DLD]; n = 24, attention-deficit/hyperactivity disorder [ADHD]; n = 26, and autism spectrum disorder [ASD]; n = 20). Children were videotaped engaging in free-play. Children's symbolic play (imagination, organization, elaboration, and comfort) was scored under conditions of both audible language and no audible language to assess diagnostic group differences in play and whether audible language impacted raters' perception of play. Results Significant differences in play were evident across diagnostic groups. The presence of language did not alter play ratings for the TD group, but differences were found among the other diagnostic groups. When language was audible, children with DLD and ASD (but not ADHD) were scored poorly on play compared to their TD peers. When language was not audible, children with DLD were perceived to play better than when language was audible. Conversely, children with ADHD showed organizational deficits when language was not available to support their play. Finally, children with ASD demonstrated poor play performance regardless of whether language was audible or not. Conclusions Language affects our understanding of play skills in some young children. Parents, researchers, and clinicians must be careful not to underestimate or overestimate play based on language presentation. Differential skills in language have the potential to unduly influence our perceptions of play for children with developmental disabilities.

Angiostrongylus cantonensis central nervous system infection in captive callitrichids in Texas.

Angiostrongylus cantonensis is a tropical lungworm of rats known for central nervous system migration in aberrant primate hosts. Here, we describe A. cantonensis infection in three captive callitrichids from a Texas zoo. The affected animals included a Goeldi's monkey (Callimico goeldii), a cotton-top tamarin (Saguinus oedipus), and a pied tamarin (Saguinus bicolor) that ranged from 8 to 18 years old. Clinical signs included lethargy, ataxia, and seizures. Histologically, these animals had an eosinophilic meningoencephalitis to myelitis and some areas had abundant macrophages and parasite migration tracts. All cases had intralesional metastrongyle parasites, and nematodes were extracted from the formalin-fixed brain specimen in one case. This extracted parasite was identified as Angiostrongylus cantonensis based on morphologic features and diagnosis was confirmed with PCR. These cases represent the first report of this parasite in non-human primates in Texas, highlighting the western spread of A. cantonensis in the continental United States.

Differential Long-Term Outcomes for Individuals With Histories of Preschool Speech Sound Disorders.

Purpose The goal of this study was to determine whether adolescent outcomes for individuals with histories of early speech sound disorders (SSD) could be differentiated by speech and language skills at earlier ages (preschool, 4-6 years, and school age, 7-10 years). Method The study used a retrospective longitudinal design. Participants with and without histories of early SSD were classified in adolescence as having no SSD, resolved SSD, low multisyllabic word (MSW; difficulty with MSW repetition but no errors in conversational speech), or persistent speech disorders (errors in both conversational speech and MSW repetition). Analysis of variance was employed to determine whether early speech, language, and literacy skills distinguished these adolescent outcome groups. Results Preschool and school-age skills differed for adolescents whose SSD had resolved from those who had persistent speech errors. Adolescents with errors solely in production of MSWs (Low MSW) did not differ in early speech and language skills from adolescents who had difficulty with both MSWs and persistent errors in conversation. Conclusions Speech and language assessments earlier in childhood can help establish risks for persistent SSD and other language and literacy difficulties in adolescence. Early identification of these clinically relevant subgroups of SSD may allow for early targeted interventions. Supplemental Material https://doi.org/10.23641/asha.9932279.

Reading Outcomes for Individuals With Histories of Suspected Childhood Apraxia of Speech.

Purpose The primary aims of this study were to examine the speech-language correlates of decoding difficulties in children with histories of suspected childhood apraxia of speech (sCAS) and to identify predictors of low-proficiency reading levels. Method Participants were school-age children and adolescents, 7-18 years of age, diagnosed with sCAS (n = 40) or speech sound disorder but no sCAS (SSD-no sCAS; n = 119). The sCAS and SSD-no sCAS reading groups were compared on measures of performance IQ, oral language, phonological awareness, rapid automatic naming, diadochokinetic rates, single word articulation, and multisyllable and nonsense word repetition. Logistic regression analyses were employed to identify predictors of low-proficiency reading in the sCAS and SSD-no sCAS groups. Results Sixty-five percent of the participants with sCAS compared to 24% of those with SSD-no sCAS were classified as low-proficiency readers based on nonsense and single word decoding. Analysis failed to reveal significant differences in reading, oral language, or phonological awareness between low-proficiency readers with sCAS and low-proficiency readers with SSD-no sCAS. Oral language and phonological awareness skills were the best predictors of reading level for all participants, followed by performance on multisyllabic word repetition and diadochokinetic rate. Conclusions The language and phonological awareness deficits of children with sCAS are related to their risks for reading failure. To a lesser degree, motor speech deficits and speech sound production also increase risks for reading difficulties. The findings justify early intervention for this subset of children.

Heritability and longitudinal outcomes of spelling skills in individuals with histories of early speech and language disorders.

This study examined the spelling skills in middle childhood and adolescence in individuals with histories of early childhood speech sound disorders (SSD) with and without language impairment (LI). Youth without such histories were also included (No SSD/LI group). The heritability of spelling skills at each age level was estimated. Children with SSD were classified as SSD-only, SSD with LI but without childhood apraxia of speech (SSD + LI/ No CAS), and CAS and LI (CAS + LI). The SSD-only group did not differ in spelling from the No SSD/LI group, suggesting that SSD-only did not increase risk for poor spelling. The SSD + LI/No CAS and CAS + LI groups had poorer spelling skills than the SSD-only and No SSD/LI groups. Spelling was associated with phonological awareness in the middle childhood and adolescent samples and with rapid automatized naming in the adolescent sample. Heritability of spelling skills was stronger in adolescence than in middle childhood. Differences in the correlates of spelling and in heritability at the two ages suggest developmental changes in the factors contributing to spelling.

Prenatal and concurrent cocaine, alcohol, marijuana, and tobacco effects on adolescent cognition and attention.

BACKGROUND: Prenatal cocaine/polydrug exposure (PCE) may increase vulnerability to substance use disorders due to associated cognitive deficits. We examined whether neurocognitive deficits in executive functions and attention observed in PCE children persisted to adolescence when compared to non-cocaine/polydrug (NCE) children, and whether adolescent substance use (tobacco, alcohol, marijuana) was also associated with neurocognitive deficits. METHODS: 354 (180 PCE, 174 NCE) adolescents in a longitudinal study from birth were administered the Wechsler Intelligence Scales for Children - IV (WISC-IV), and the Integrated Visual and Auditory Continuous Performance Test (IVA/CPT) at age 15.5. Assessments of prenatal exposure to cocaine, alcohol, marijuana, and tobacco and measures of use at age 15.5 were taken. Confounding factors measured included lead, the caregiving environment, and violence exposure. Relationships between drug use and prenatal exposures on outcomes were assessed through multiple regression. RESULTS: Adolescents with PCE had deficits in Perceptual Reasoning IQ and visual attention. Prenatal alcohol exposure predicted verbal and working memory IQ and visual and auditory attention deficits. Adolescent tobacco, alcohol, and marijuana use predicted attention in addition to PCE, lead and the caregiving environment. CONCLUSION: Prenatal cocaine and alcohol exposure and adolescent use of substances are associated with neurocognitive deficits known to increase vulnerability to SUDs.

Masked Speech Recognition and Reading Ability in School-Age Children: Is There a Relationship?

Purpose: The relationship between reading (decoding) skills, phonological processing abilities, and masked speech recognition in typically developing children was explored. This experiment was designed to evaluate the relationship between phonological processing and decoding abilities and 2 aspects of masked speech recognition in typically developing children: (a) the ability to benefit from temporal and spectral modulations within a noise masker and (b) the masking exerted by a speech masker. Method: Forty-two typically developing 3rd- and 4th-grade children with normal hearing, ranging in age from 8;10 to 10;6 years (mean age = 9;2 years, SD = 0.5 months), completed sentence recognition testing in 4 different maskers: steady-state noise, temporally modulated noise, spectrally modulated noise, and two-talker speech. Children also underwent assessment of phonological processing abilities and assessments of single-word decoding. As a comparison group, 15 adults with normal hearing also completed speech-in-noise testing. Results: Speech recognition thresholds varied between approximately 3 and 7 dB across children, depending on the masker condition. Compared to adults, performance in the 2-talker masker was relatively consistent across children. Furthermore, decreasing the signal-to-noise ratio had a more precipitously deleterious effect on children's speech recognition in the 2-talker masker than was observed for adults. For children, individual differences in speech recognition threshold were not predicted by phonological awareness or decoding ability in any masker condition. Conclusions: No relationship was found between phonological awareness and/or decoding ability and a child's ability to benefit from spectral or temporal modulations. In addition, phonological awareness and/or decoding ability was not related to speech recognition in a 2-talker masker. Last, these data suggest that the between-listeners variability often observed in 2-talker maskers for adults may be smaller for children. The reasons for this child-adult difference need to be further explored. Supplemental Material: https://doi.org/10.23641/asha.5913547.

Blood lead levels and longitudinal language outcomes in children from 4 to 12 years.

OBJECTIVES: In this study, the authors aimed to examine the association of a range of blood lead levels on language skills assessed at 4, 6, 10 and 12 years of age using a prospective longitudinal design controlling for potential confounding variables including maternal vocabulary, caregiver's psychological distress and symptomatology, child's race and prenatal drug exposure. METHODS: The participants (N = 278) were a subsample of a large longitudinal study that examined the association of prenatal drug exposure on children who were followed prospectively from birth and assessed for receptive and expressive language skills at 4, 6, 10 and 12 years of age. Blood lead levels were determined at 4-years of age by atomic absorption spectrometry. A mixed model approach with restricted maximum likelihood procedures was used to assess the association of lead on language outcomes. RESULTS: Longitudinal mixed model analyses suggested a negative effect of lead exposure on both receptive and expressive language, with the adverse outcomes of lead exposure appearing to become more prominent at 10 and 12 years. Higher caregiver vocabulary was positively associated with child's language scores whereas caregiver psychological distress appeared to negatively affect language scores. Prenatal drug exposure was not related to the effects of lead on language skills. CONCLUSIONS: These findings suggest that elevated blood lead levels occurring early in life may be associated with poorer language skills at older ages. A language rich environment may minimize the negative influence of early lead exposure on language skills, with psychological distress seemingly exacerbating the negative outcome.