Michael H. Livingston

Content validity of the expanded and revised Gross Motor Function Classification System

The aim of this study was to validate the expanded and revised Gross Motor Function Classification System (GMFCS‐E&R) for children and youth with cerebral palsy using group consensus methods. Eighteen physical therapists participated in a nominal group technique to evaluate the draft version of a 12‐ to 18‐year age band. Subsequently, 30 health professionals from seven countries participated in a Delphi survey to evaluate the revised 12‐ to 18‐year and 6‐ to 12‐year age bands. Consensus was defined as agreement with a question by at least 80% of participants. After round 3 of the Delphi survey, consensus was achieved for the clarity and accuracy of the descriptions for each level and the distinctions between levels for both the 12‐ to 18‐year and 6‐ to 12‐year age bands. Participants also agreed that the distinction between capability and performance and the concept that environmental and personal factors influence methods of mobility were useful for classification of gross motor function. The results provide evidence of content validity of the GMFCS‐E&R. The GMFCS‐E&R has utility for communication, clinical decision making, databases, registries, and clinical research.

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

This review describes trends in quality of life (QOL) and health‐related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive cross‐sectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well‐being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well‐being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well‐being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self‐report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.

Quality of life and health-related quality of life of adolescents with cerebral palsy

This study assessed quality of life (QOL) and health‐related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r2). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.

Exploring Issues of Participation Among Adolescents with Cerebral Palsy: What's Important to Them?

ABSTRACT The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 ± 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = .99), age (p = .88), type of respondent (adolescents versus parent) (p = .27), Gross Motor Function Classification System (GMFCS) level (p = .93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = .45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation.

Fundoplication and gastrostomy versus percutaneous gastrojejunostomy for gastroesophageal reflux in children with neurologic impairment: A systematic review and meta-analysis.

BACKGROUND Children with neurologic impairment often fail medical management of gastroesophageal reflux and proceed to fundoplication and gastrostomy (FG) or percutaneous gastrojejunostomy (GJ). Current guidelines do not recommend one treatment over the other, and there is ongoing uncertainty regarding clinical management. METHODS We conducted a structured search of Medline, Embase, trial registries, and the gray literature. We included studies that compared outcomes for FG and GJ in children with neurologic impairment. RESULTS We identified 556 children from three retrospective studies who underwent FG (n=431) or GJ (n=125). There were no differences in rates of pneumonia (17% vs 19%, p=0.74) or mortality (13% vs 14%, p=0.76). Few deaths were due to procedural complications (1%) or reflux (2%). There was a trend towards more major complications with FG (29%) compared to GJ (12%) (risk ratio=1.70, 0.85-3.41, p=0.14). Minor complications were more common with GJ (70%) than FG (45%), but this difference was also not statistically significant (risk ratio=0.38, 0.05-3.07, p=0.36). No studies reported quality of life using validated measures. CONCLUSIONS The quality of the evidence for outcomes of FG versus GJ is very low. Large comparative studies are needed to determine which approach is associated with the best quality-of-life outcomes.

Adolescents with cerebral palsy: Stability in measurement of quality of life and health-related quality of life over 1 year

This study assessed stability of measurement of quality of life (QOL) and health‐related quality of life (HRQOL) over the course of 1 year among 185 adolescents (mean age 16y, SD 1y 9mo) with cerebral palsy (CP). Participants were classified on the Gross Motor Function Classification System as level I (n=55), II (n=30), III (n=27), IV (n=46), or V (n=27). QOL was assessed by self‐ (n=125) or proxy‐report (n=60) with the Short Version of the Quality of Life Instrument for People with Developmental Disabilities (QOL Instrument), which describes domains of Being, Belonging, and Becoming. HRQOL was captured through parent proxy‐reports with the Health Utilities Index Mark 3 (HUI3). Generalizability coefficients (G) for domain and Overall QOL scores on the QOL Instrument ranged from 0.50 to 0.73, indicating that between 50 and 73% of the variance was stable over 1 year. Stability on the HUI3 was excellent (G>0.90) for ambulation and overall utility scores; moderate (G=0.70–0.90) for speech, vision, dexterity, cognition, and hearing; and low for pain (G=0.48) and emotion (G=0.24). Correlations between scores on the two instruments were moderate even when adjustments were made for the lack of perfect stability over 1 year. This supports the notion that QOL and HRQOL are different aspects of life experience among adolescents with CP.

A Survey of Occupational Therapists in Canada about Their Knowledge and Use of the ICF

Background. The current impact of the International Classification of Functioning, Disability and Health (ICF) on the field of occupational therapy within Canada is unknown. Purpose. To survey occupational therapists in Canada about their knowledge, use of, and suggestions for education about the ICF. Method. Mixed methods design included (i) an online survey, with data analyzed using quantitative methods; and (ii) semi-structured interviews with a purposeful sample of 10 therapists, using content analysis. Results. The online survey was completed by 587 occupational therapists (17.6% return). Four hundred and ten respondents (70.0%) indicated some ICF knowledge, and 121 of those individuals (29.5%) reported using it in practice. Interview participants suggested resources, perceived meaning and investment factors impact ICF knowledge. Suggested uses include frameworks and interprofessional collaboration, while ideas for education involve meaningful and accessible formats. Practice Implications. The ICF may be useful to occupational therapists in different settings if it fulfills a meaningful purpose and fits with practice models.

Early coagulopathy and metabolic acidosis predict transfusion of packed red blood cells in pediatric trauma patients

BACKGROUND Severely injured pediatric trauma patients often present to hospital with early coagulopathy and metabolic acidosis. These derangements are associated with poor outcomes, but it is unclear to what degree they predict transfusion of packed red blood cells (pRBC). METHODS We retrospectively identified pediatric trauma patients from a level 1 trauma center from 2006 to 2013. Inclusion criteria were age less than 18years, Injury Severity Score greater than 12, and pRBC transfusion within 24h of admission. RESULTS We identified 96 pediatric trauma patients who underwent pRBC transfusion within 24h of presentation to hospital. On admission, 43% of these patients had one or more signs of coagulopathy, and 81% had metabolic acidosis. Size of pRBC transfusion in the first 24h ranged from 3 to 177mL/kg (mean 29mL/kg), and nineteen patients (20%) underwent massive transfusion (>40ml/kg in 24h). Univariate analysis indicated that size of pRBC transfusion was associated with initial base excess (r=0.46), international normalized ratio (r=0.35), partial thromboplastin time (r=0.41), fibrinogen (r=0.46), and BIG score (Base deficit, INR, Glasgow Coma Scale (GCS), r=0.36). Platelet count, age, GCS, and direct versus referred presentation were not predictive. Multivariable linear regression confirmed that coagulopathy and metabolic acidosis remained predictive after adjusting for direct versus referred presentation (R(2)=0.30). CONCLUSIONS Early coagulopathy and metabolic acidosis predict size of pRBC transfusion among pediatric trauma patients. Further research is needed to develop massive transfusion protocols and guidelines for activation.

Are some children with empyema at risk for treatment failure with fibrinolytics? A multicenter cohort study

BACKGROUND Guidelines recommend that children with empyema be treated initially with chest tube insertion and intrapleural fibrinolytics. Some patients have poor outcomes with this approach, and it is unclear which factors are associated with treatment failure. METHODS Possible risk factors were identified through a review of the literature. Treatment failure was defined as need for repeat pleural drainage and/or total length of stay greater than 2weeks. RESULTS We retrospectively identified 314 children with empyema treated with fibrinolytics at The Hospital for Sick Children (2000-2013, n=195), Childrens Hospital, London Health Sciences Centre (2009-2013, n=39), and McMaster Childrens Hospital (2007-2014, n=80). Median length of stay was 11days (range 5-69days). Thirteen percent of children required repeat drainage procedures, and 34% experienced treatment failure. There were no deaths. White blood cell count, erythrocyte sedimentation rate, C-reactive protein, albumin, urea to creatinine ratio, and signs of necrosis on initial chest x-ray were not associated with treatment failure. Multivariable logistic regression demonstrated increased risk with positive blood culture (odds ratio=2.7), immediate admission to intensive care (odds ratio=2.6), and absence of complex septations on baseline ultrasound (odds ratio=2.1). Male gender and platelet count were associated with treatment failure in the univariate analysis but not in the multivariable model. CONCLUSIONS Predicting which children with empyema are at risk for treatment failure with fibrinolytics remains challenging. Risk factors include positive blood culture, immediate admission to intensive care, and absence of complex septations on ultrasound. Routine blood work and inflammatory markers have little prognostic value.

Malone appendicostomy versus cecostomy tube insertion for children with intractable constipation: A systematic review and meta-analysis

PURPOSE Children with intractable constipation are often treated with antegrade continence enemas. This requires the creation of a Malone appendicostomy in the operating room or insertion of a cecostomy tube using endoscopic, radiologic, or surgical techniques. The purpose of this study was to assess the evidence regarding these procedures. METHODS We conducted a search of Embase, Medline, CINAHL, and Web of Science up to October 2016. We included comparative studies of children treated with Malone appendicostomy or cecostomy tube insertion. Two reviewers screened abstracts, reviewed studies, and extracted data. RESULTS We identified 166 children from three retrospective studies who underwent Malone appendicostomy (n=82) or cecostomy tube insertion (n=84). There were no differences in the number of patients who achieved continence (80% versus 70%, p=0.76), but the need for additional surgery was higher in children treated with Malone appendicostomy (30% versus 12%, p=0.01). Studies reported a variety of tube and stoma-related complications, but quality of life was not assessed using validated measures. CONCLUSION Malone appendicostomy and cecostomy tube insertion are comparable in terms of achieving continence. Children treated with Malone appendicostomy appear to be more likely to require additional surgery due to early or late complications. LEVEL OF EVIDENCE Therapeutic, 1c.