A Feasibility Study of a Physical and Occupational Therapy-Led and Parent-Administered Program to Improve Parent Mental Health and Infant Development.

AIMS: Extremely premature birth puts infants at high risk for developmental delay and results in parent anxiety and depression. The primary objective of this study was to characterize feasibility and acceptability of a therapist-led, parent-administered therapy and massage program designed to support parent mental health and infant development. METHODS: A single cohort of 25 dyads - parents (24 mothers, 1 father) and extremely preterm (<28 wk gestation) infants - participated in the intervention. During hospitalization, parents attended weekly hands-on education sessions with a primary therapist. Parents received bi-weekly developmental support emails for 12 months post-discharge and were scheduled for 2 outpatient follow up visits. We collected measures of parent anxiety, depression, and competence at baseline, hospital discharge, and <4 and 12 months post-discharge. RESULTS: All feasibility targets were met or exceeded at baseline and discharge (≥70%). Dyads participated in an average of 11 therapy sessions (range, 5-20) during hospitalization. Lower rates of data collection adherence were observed over successive follow ups (range, 40-76%). Parent-rated feasibility and acceptability scores were high at all time points. CONCLUSIONS: Results support parent-rated feasibility and acceptability of the TEMPO intervention for extremely preterm infants and their parents in the Neonatal Intensive Care Unit.

ICF Core Sets for the assessment of functioning of adults with cerebral palsy.

AIM: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP). METHOD: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTS: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies. INTERPRETATION: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

Characteristics of Interventions to Improve Bone Health in Children With Cerebral Palsy: A Systematic Review.

PURPOSE: A systematic review evaluated exercise parameters and ages that produced the most improvement in bone among individuals with cerebral palsy (CP) ages 3 to 21 years. METHODS: PubMed, Scopus, Ebscohost, and Web of Science identified potential articles. Covidence was used to identify eligible citations and assess bias. The osteogenic index (OI) was used to evaluate intervention parameters. RESULTS: The database search identified 312 citations. Twelve full-text articles were included. A 1-hour calisthenic exercise program performed 2 to 3 times a week for 8 months targeting each body region had the highest effect size and a substantial OI. Most of the interventions reviewed had low OIs. Activities of longer duration and greater intensity had greater OIs and prepubertal age-enhanced treatment effects. CONCLUSION: Bone interventions for individuals with CP have low OIs, and principles of mechanostat theory should be applied to exercise dosing.

A Life Course Perspective on Growing Older With Cerebral Palsy.

Despite most children with cerebral palsy (CP) now living within typical life spans, little is known about how the effects of CP unfold across the life course and impact participation in everyday life during adulthood. In this study, we explored the experiences of 38 adults growing older with CP. Data were gathered using semi-structured interviews focused on participants' engagement in activities in their community and analyzed using a life course perspective to deepen our understanding of the experiences of our participants. We found that individual agency, family and social contexts, as well as larger sociocultural contexts all shaped participants' experiences as they grew older. The findings highlight the usefulness of the life course perspective for understanding how the effects of a diagnosis of CP unfold over time. Further use of this perspective can better inform health care services to meet the needs of adults with CP aging with a lifelong disability.

Lack of Abdominal Stability and Control as a Possible Contributor to Rectus Femoris Avulsion Fracture in the Adolescent Soccer Player: A Case Report.

PURPOSE: To describe evaluation and physical therapy treatment for an athlete who is male and 13 years old with healing bilateral rectus femoris avulsion fractures. SUMMARY OF KEY POINTS: Fractures of the anterior inferior iliac spine may be linked to poor abdominal stability in soccer athletes who are male and an adolescent. The development and use of an abdominal stability screening tool could be an efficient and effective way to determine fracture risk and guide prevention programs. CONCLUSIONS AND RECOMMENDATIONS FOR CLINICAL PRACTICE: Following 8 weeks of conservative physical therapy treatment, the athlete met all goals and returned to pain-free soccer activities without residual impairments. Four months following discharge, he reported full participation in soccer competition without complications. This case illustrates that abdominal weakness is a potential risk factor for anterior inferior iliac spine avulsion fracture. Screening for abdominal weakness and incorporating preventative programs into training regimens is recommended to prevent anterior inferior iliac spine injuries in this population.

Designing Exercise to Improve Bone Health Among Individuals With Cerebral Palsy.

PURPOSE: Individuals with cerebral palsy (CP), ambulatory or not, have less bone strength and density than their peers. Aging individuals with CP are at a higher risk for nontraumatic fractures, progressive deformity, pain, and spinal stenosis. Critical periods for skeletal formation are during prepuberty and adolescence. Applying mechanostat theory to exercise design for individuals with CP may be beneficial. METHODS: Principles of mechanostat theory, particularly the osteogenic index, is applied to guide the design of exercise programs based on varying levels of physical capacity. RESULTS: Recommendations are made for optimizing dosing of a variety of interventions for improving bone health among individuals with CP based on mechanostat theory with specific type, number of repetitions, and frequency. CONCLUSIONS: Researchers and clinicians are called to action to consider the role of exercise throughout the lifespan for all individuals with CP, regardless of level of severity.

Health at the writing desk of John Ruskin: a study of handwriting and illness.

Though John Ruskin (1819-1900) is remembered principally for his work as a theorist, art critic and historian of visual culture, he wrote exhaustively about his health in his correspondence and diaries. Ruskin was prone to recurring depressive and hypochondriacal feelings in his youth and adulthood. In 1871, at the age of 52 years, he developed an illness with relapsing psychiatric and neurological features. He had a series of attacks of brain disturbance, and a deterioration of his mental faculties affected his writing for years before curtailing his career a decade before he died. Previous writers have suggested he had a psychiatric malady, perhaps schizophrenia or schizoaffective disorder. But the more obvious conclusion from a close medical reading of Ruskin's descriptions of his illness is he had some sort of 'organic' brain illness. This paper aims to give insight into the relationship between Ruskin's state of well-being and the features of his writing through a palaeographical study of his letters and diary entries. We examine the handwriting for physical traces of Ruskin's major brain illness, guided by the historical narrative of the illness. We also examine Ruskin's recording of his experiences for what they reveal about the failure of his health and its impact on his work. Ruskin's handwriting does not have clear-cut pathological features before around 1885, though suggestions of subtle writing deficits were present as early as 1876. After 1887, Ruskin's handwriting shows fixed pathological signs-tremor, disturbed letter formation and features that reflect a slow and laborious process of writing. These observations are more than could be explained by normal ageing, and suggest the presence of a neurological deficit affecting writing control. Our findings are consistent with conclusions that we drew from the historical record-that John Ruskin had an organic neurological disorder with cognitive, behavioural, psychiatric and motor effects.

How to use pen and paper tasks to aid tremor diagnosis in the clinic.

When a patient presents with tremor, it can be useful to perform a few simple pen and paper tests. In this article, we explain how to maximise the value of handwriting and of drawing Archimedes spirals and straight lines as clinical assessments. These tasks take a matter of seconds to complete but provide a wealth of information that supplements the standard physical examination. They aid the diagnosis of a tremor disorder and can contribute to its longitudinal monitoring. Watching the patient's upper limb while they write and draw may reveal abnormalities such as bradykinesia, dystonic posturing and distractibility. The finished script and drawings can then be evaluated for frequency, amplitude, direction and symmetry of oscillatory pen movements and for overall scale of penmanship. Essential, dystonic, functional and parkinsonian tremor each has a characteristic pattern of abnormality on these pen and paper tests.

Gait Training With Visual Feedback and Proprioceptive Input to Reduce Gait Asymmetry in Adults With Cerebral Palsy: A Case Series.

PURPOSE: The purpose of this case series was to investigate the feasibility of using visual feedback on gait asymmetry during gait retraining and whether this leads to reduced asymmetry, improvement in gait speed, cost of walking, and dynamic balance in ambulant adults with cerebral palsy (CP). METHODS: Five adults with CP, who were ambulatory and had step length or stance time asymmetry, trained for 18 sessions on a split-belt treadmill with concurrent visual feedback from a virtual environment. Training also included overground gait training to encourage transfer of learning. RESULTS: All participants reduced gait asymmetry and improved on outcomes at posttest and follow-up. CONCLUSIONS: Outcome measures and training protocols were feasible in this sample of convenience of adults with CP who were ambulatory and who did not have visual impairment. The adults with CP in this study demonstrated individual improvements in gait and balance following training.

Historical Analyses of Disordered Handwriting: Perspectives on Early 20th-Century Material From a German Psychiatric Hospital.

Handwritten texts carry significant information, extending beyond the meaning of their words. Modern neurology, for example, benefits from the interpretation of the graphic features of writing and drawing for the diagnosis and monitoring of diseases and disorders. This article examines how handwriting analysis can be used, and has been used historically, as a methodological tool for the assessment of medical conditions and how this enhances our understanding of historical contexts of writing. We analyze handwritten material, writing tests and letters, from patients in an early 20th-century psychiatric hospital in southern Germany (Irsee/Kaufbeuren). In this institution, early psychiatrists assessed handwriting features, providing us novel insights into the earliest practices of psychiatric handwriting analysis, which can be connected to Berkenkotter's research on medical admission records. We finally consider the degree to which historical handwriting bears semiotic potential to explain the psychological state and personality of a writer, and how future research in written communication should approach these sources.

Adaptation of the lateral distal femur DXA scan technique to adults with disabilities.

The technique that best addresses the challenges of assessing bone mineral density in children with neuromuscular impairments is a dual-energy X-ray absorptiometry (DXA) scan of the lateral distal femur. The purpose of this study was to adapt this technique to adults with neuromuscular impairments and to assess the reproducibility of these measurements. Thirty-one adults with cerebral palsy had both distal femurs scanned twice, with the subject removed and then repositioned between each scan (62 distal femurs, 124 scans). Each scan was independently analyzed twice by 3 different technologists of varying experience with DXA (744 analyses). Precision of duplicate analyses of the same scan was good (range: 0.4%-2.3%) and depended on both the specific region of interest and the experience of the technologist. Precision was reduced when comparing duplicate scans, ranging from 7% in the metaphyseal (cancellous) region to 2.5% in the diaphyseal (cortical) region. The least significant change was determined as recommended by the International Society for Clinical Densitometry for each technologist and each region of interest. Obtaining reliable, reproducible, and clinically relevant assessments of bone mineral density in adults with neuromuscular impairments can be challenging. The technique of obtaining DXA scans of the lateral distal femur can be successfully applied to this population but requires a commitment to developing the necessary expertise.

Social Model Hospice: Providing Hospice and Palliative Care for a Homeless Population in Salt Lake City, Utah.

Health care for the homeless population is a complex challenge and represents a significant gap in care, particularly for those at the end of life. Hospice care may be desired but is rarely an option for people without residences, social support, and payment sources. Social model hospice is a unique paradigm of care delivery that offers a viable solution to make hospice and palliative care possible for this population. In this historical report from interviews with early organizers, prior and current leadership (n = 6), the evolution of The INN Between in Salt Lake City, Utah, is described. In 2010, The INN Between was conceptualized as a nonprofit community effort addressing this need to provide an alternative to people dying unsheltered. After 5 years of planning, it opened in 2015 and has grown to become a comprehensive community resource for homeless medically frail and terminally ill individuals. Recommendations for establishing social model hospices are made: key strategies include identifying stakeholders dedicated to alleviating end-of-life homelessness needs, doing a formal needs assessment to identify community resource deficits, and forming mentoring relationships with established programs. Social model hospice is a viable way of meeting the end-of-life needs of many communities' most vulnerable residents.

Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Adults with cerebral palsy (CP) have unique healthcare needs and risks, including high risk of functional decline. Understanding functional decline is an area of priority for CP research. OBJECTIVE: Describe factors associated with patient-reported changes in function among adults with CP living in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the CP Research Network (CPRN) Community Registry. RESULTS: Participants included 263 respondents (76% female (n = 200); mean age 42 years (SD 14); 95% White (n = 249); 92% non-Hispanic (n = 241)). Many reported functional changes, most commonly a decline in gross motor function since childhood (n = 158, 60%). Prevalence of gross motor decline varied significantly by Gross Motor Function Classification System (GMFCS) level (p < 0.001), but neither hand function decline (p = 0.196) nor communication decline (p = 0.994) differed by GMFCS. All types of decline increased with increasing age, with statistically significant differences between age groups (p < 0.001 gross motor; p = 0.003 hand function; p = 0.004 communication). Those with spastic CP (n = 178) most commonly reported gross motor functional decline (n = 108/178, 60.7%). However, the prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP (p = 0.789). CONCLUSIONS: Many adults in the CPRN Community Registry reported functional decline, most commonly in gross motor function. Functional decline across domains increased with age. Further research into risk stratification and preventive and rehabilitative measures is needed to address functional decline across the lifespan.

Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.

NARRATIVE SUMMARY: The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Systematic review of the clinimetric properties of laboratory- and field-based aerobic and anaerobic fitness measures in children with cerebral palsy.

OBJECTIVE: To systematically evaluate the level of evidence of the clinimetric properties of measures of aerobic and anaerobic capacity used for children with cerebral palsy (CP). DATA SOURCES: A systematic search of databases PubMed, Embase, SPORTDiscus, and PsycINFO through April 2011 was performed. STUDY SELECTION: Two independent raters identified and examined studies that reported laboratory- or field-based measures of maximal aerobic or anaerobic capacity in children with CP aged 5 to 14 years. DATA EXTRACTION: The COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist was used by 2 independent raters to evaluate the methodologic quality of the included clinimetric studies and to identify measures used in these studies. DATA SYNTHESIS: Twenty-four studies that used a maximal aerobic or anaerobic capacity measure were identified. Five studies reported clinimetric properties for 5 measures (2 aerobic and 3 anaerobic measures). Methodologic quality was excellent in 3 studies, showing good validity and reliability of field-based aerobic (Shuttle Run Test) and anaerobic (Muscle Power Sprint Test) measures. The studies on laboratory-based measures were rated fair, mainly because of inadequate statistics. The level of evidence was strong for good validity and reliability of the field-based tests. The level of evidence was unknown for validity and low to moderate for good reliability of laboratory-based tests. CONCLUSIONS: There is a paucity of research on the clinimetric properties of measurement instruments to assess aerobic and anaerobic capacity for children with CP. Further clinimetric studies of laboratory-based measures in children with CP at all Gross Motor Function Classification System (GMFCS) levels, and clinimetric studies of field-based measures in children who are classified as GMFCS levels III to V are required.

Corticomuscular Coherence in Children with Unilateral Cerebral Palsy: A Feasibility and Preliminary Protocol Study.

Objective This study assessed the feasibility of corticomuscular coherence measurement during a goal-directed task in children with unilateral cerebral palsy while establishing optimal experimental parameters. Methods Participants (Manual Ability Classification System levels I-III) completed a submaximal isometric goal-directed grip task during simultaneous electroencephalography and electromyography (EMG) acquisition. Results All participants (n = 11, 6 females, mean age 11.3 ±2.4 years) completed corticomuscular coherence procedures. Of the 40 trials obtained per extremity, an average of 29 (n = 9) and 27 (n = 10) trials were retained from the more- and less-affected extremities, respectively. Obtaining measurement stability required an average of 28 trials per extremity. Conclusion Findings from this work support the feasibility of corticomuscular coherence measurement in children with unilateral cerebral palsy. Acquiring 28 to 40 corticomuscular coherence trials per extremity is ideal. The experimental parameters established in this work will inform future corticomuscular coherence application in pediatric unilateral cerebral palsy.

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment. OBJECTIVE: Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry. RESULTS: Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles. CONCLUSIONS: Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

An international clinical perspective on functioning and disability in adults with cerebral palsy.

BACKGROUND: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. OBJECTIVE: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. METHODS: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. RESULTS: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. CONCLUSIONS: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.