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1.
Dev Med Child Neurol ; 2024 Jan 18.
Artigo em Inglês | MEDLINE | ID: mdl-38236645

RESUMO

AIM: To identify prioritized strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy (CP) for both Maori and non-Maori individuals. METHOD: Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management of CP. Health design researchers facilitated two 'discovery' (sharing experiences and ideas) and two 'prototyping' (solution-focused) workshops in Aotearoa, New Zealand. A Maori health service worker co-facilitated workshops for Maori families. RESULTS: Between 7 and 13 participants (14 health care professionals, 12 parents of children with CP across all functional levels) attended each workshop. The discovery workshops revealed powerful stories about early experiences and needs within clinician-family communication and service provision. The prototyping workshops revealed priorities around communication, and when, what, and how information is provided to families; recommendations were co-created around what should be prioritized within a resource to aid health care navigation. INTERPRETATION: There is a critical need for improved communication, support, and guidance, as well as education, for families navigating their child with CP through the health care system. Further input from families and health care professionals partnering together will continue to guide strategies to improve health care service delivery using experiences as a mechanism for change.

2.
J Clin Med ; 11(23)2022 Nov 25.
Artigo em Inglês | MEDLINE | ID: mdl-36498542

RESUMO

(1) Background: Respiratory disease is a leading cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP). This study describes the prevalence of CP-related respiratory disease and the non-modifiable risk factors for respiratory-related hospital admissions in the Aotearoa New Zealand population. (2) Methods: New Zealand Cerebral Palsy Register (NZCPR) participant data and de-identified data from the National Minimum Dataset and Pharmaceutical Dispensing Collections were linked to identify all respiratory-related hospital admissions and respiratory illness-related antibiotic exposure over 5 years in individuals with CP (0−26 years). (3) Results: Risk factors for respiratory-related hospital admissions included being classified Gross Motor Function Classification System (GMFCS) IV or V compared to GMFCS I [OR = 4.37 (2.90−6.58), p < 0.0001; OR = 11.8 (7.69−18.10), p < 0.0001, respectively,]; having ≥2 antibiotics dispensed per year [OR = 4.42 (3.01−6.48), p < 0.0001]; and being of Maori ethnicity [OR = 1.47 (1.13−1.93), p < 0.0047]. Maori experienced health inequities compared to non-Maori, with greater functional disability, and also experienced greater antibiotic dispensing than the general population. (4) Conclusion: Maori children and young adults have a higher risk of respiratory-related illness. Priority should be given to the screening for potentially modifiable risk factors for all children with CP from diagnosis onwards in a way that ensures Maori health equity.

3.
Glob Health Res Policy ; 7(1): 24, 2022 07 19.
Artigo em Inglês | MEDLINE | ID: mdl-35854338

RESUMO

BACKGROUND: Cerebral palsy (CP) registers serve as instrumental tools to support development of care pathways, preventative strategies, and health gains. Such health gains, however, are not always universal, with Indigenous health inequities common. To support Indigenous health, health registers need complete, consistent, and high-quality data. The aim of this study was to identify perceived barriers to the ascertainment of Indigenous peoples on health registers and to collate strategies supporting comprehensive ascertainment and achievement of high-quality Indigenous data. METHODS: Environmental scanning methods were utilized within a Kaupapa Maori theoretical framework, which aims to produce research that is transformational and supportive of Indigenous health gain. Knowledge and insights were obtained from CP registers in countries with Indigenous populations and complemented by information from health registers in Aotearoa New Zealand (NZ). Data collection methods included an online survey and scan of organizational websites. Data extraction focused on general information about the register, barriers to ascertainment, and strategies to support ascertainment and high data quality. RESULTS: 52 registers were identified, 20 completed the survey and 19 included in the study (CP registers, n = 10, NZ health registers, n = 9). Web scan data were included for the other 32 registers (CP registers, n = 21, NZ health registers, n = 11). Indigenous health equity was identified in the visions and aims of only two health registers. Ethnicity data collection was identified in nearly three quarters of survey respondents and a limited number of organizational websites. Over half of survey respondents described system, health provider/service, or workforce barriers to ascertainment. Strategies were categorized into collaboration, health provider/service, workforce, and systems-levels. Indigenous-specific strategies were limited and focused on personal behaviour and access to registration. CONCLUSIONS: CP and other health registers can have a significant role in identifying and addressing Indigenous health inequities. However, this is not currently an overt priority for many registers in this study and few registers describe ascertainment and data quality strategies specific to Indigenous peoples. Significant opportunity exists for health registers to be accountable and to implement approaches to support Indigenous health equity, address structural determinants of inequities, and achieve health gain for all.


Assuntos
Equidade em Saúde , Confiabilidade dos Dados , Humanos , Povos Indígenas , Havaiano Nativo ou Outro Ilhéu do Pacífico , Grupos Populacionais
4.
J Clin Med ; 11(7)2022 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-35407475

RESUMO

Cerebral palsy is a common cause of physical disability. The New Zealand Cerebral Palsy Register (NZCPR) was established in 2015 and reports national data. Internationally, an early CP diagnosis has been a focus, with imaging and clinical tools used to enable early accurate detection. Accordingly, guidelines are being developed for New Zealand, including a specific pathway for high-risk neonatal intensive care (NICU) graduates, reflecting the high rate of CP in this group. To inform this work, we reviewed imaging data from a retrospective NICU cohort identified from the NZCPR. In these 140 individuals with CP and a confirmed NICU admission during 2000-2019 inclusive, imaging frequency, modality, and rate of abnormality was determined. Overall, 114 (81.4%) had imaging performed in the NICU, but the frequency and modality used varied by gestational subgroup. For infants born at less than 32 weeks gestation, 53/55 had routine imaging with ultrasound, and IVH was graded as none or mild (grade 1-2) in 35 or severe (grade 3-4) in 18 infants. For the 34 infants born between 32-36 weeks gestation, only 13/19 imaged in the NICU were reported as abnormal. For 51 term-born infants, 41/42 imaged in the NICU with MRI had abnormal results.

5.
Int J Equity Health ; 21(1): 34, 2022 03 12.
Artigo em Inglês | MEDLINE | ID: mdl-35279132

RESUMO

BACKGROUND: Health registers play an important role in monitoring distribution of disease and quality of care; however, benefit is limited if ascertainment (i.e., the process of finding and recruiting people on to a register) and data quality (i.e., the accuracy, completeness, reliability, relevance, and timeliness of data) are poor. Indigenous peoples experience significant health inequities globally, yet health data for, and about, Indigenous peoples is often of poor quality. This narrative review aimed to (i) identify perceived barriers for the ascertainment of Indigenous peoples on health registers, and (ii) collate strategies identified and used by health registers to support comprehensive ascertainment and high-quality data for Indigenous peoples. METHODS: A Kaupapa Maori theoretical framework was utilized to guide this work. Four electronic databases were systematically searched for original articles and screened for eligibility. Studies involving health registers with Indigenous population(s) identified were included if either ascertainment or data quality strategies were described. Data extraction focused on the reporting of research involving Indigenous peoples using the CONSIDER checklist domains, ascertainment, and data quality. RESULTS: Seventeen articles were included spanning publication between 1992 and 2020. Aspects of four of eight CONSIDER domains were identified to be included in the reporting of studies. Barriers to ascertainment were themed as relating to 'ethnicity data collection and quality', 'systems and structures', 'health services/health professionals', and 'perceptions of individual and community-level barriers'. Strategies to support ascertainment were categorized as 'collaboration', 'finding people', and 'recruitment processes'. Categorized strategies to support data quality were 'collaboration', 'ethnicity data collection and quality', 'systems-level strategies', and 'health service/health professional-level strategies'. CONCLUSIONS: Poor-quality data for Indigenous peoples in health registers prevents the achievement of health equity and exemplifies inaction in the face of need. When viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly relating to the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. Indigenous led research, meaningful collaboration, and a sharing of knowledge and experiences between health registers is recommended to enable research and health registers that support Indigenous self-determination and health equity.


Assuntos
Equidade em Saúde , Atenção à Saúde , Humanos , Povos Indígenas , Havaiano Nativo ou Outro Ilhéu do Pacífico , Reprodutibilidade dos Testes
6.
J Clin Med ; 10(7)2021 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-33807393

RESUMO

Listening to the family experience is integral to identifying areas of strength and for improvement in health service delivery around diagnosis and early management of cerebral palsy (CP). Families of children with a diagnosis of CP were invited to complete a purpose-developed electronic survey that included items around the timing of diagnosis, their experiences and satisfaction. It also allowed families to expand on their experiences through free text. Of the 57 families responding, 49% of children functioned at Gross Motor Function Classification System (GMFCS) levels I or II, 8% at GMFCS level III and 23% at GMFCS levels IV or V. 51% of participants were satisfied or very satisfied with the diagnosis experience, 18% were neutral about the experience and 31% were dissatisfied or very dissatisfied. Though the findings of this study may be subject to selection bias, perceived delays in the receipt of diagnosis of CP appeared common with 60% of participants indicating concerns about their child by <6 months of age but only 21% provided with a diagnosis of CP <6 months of age. Approximately 18% of families experienced a delay of more than 12 months. Thirty-four (61%) participants noted a delay between referrals to a service and receipt of service management/therapy. Common themes impacting on families' experience in the diagnosis and health service delivery journey related to provision of information, and the style of communication, with both direct and ongoing communication styles common for greater family satisfaction. Overall, families desired the diagnosis experience to be informative and timely, with early follow up support and assistance with health sector navigation.

7.
J Paediatr Child Health ; 57(4): 541-547, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33217101

RESUMO

AIM: A diagnosis of cerebral palsy (CP) can, and should, be made as early as possible. This work describes current clinical practice around the awareness and use of diagnostic tools for the detection of CP in New Zealand (NZ). METHODS: A purpose-developed survey distributed electronically to NZ clinicians working with young children with or at risk of CP. RESULTS: A total of 159 clinicians (including paediatricians, physiotherapists and occupational therapists) participated in this cross-sectional study. Ninety-six percent were aware that a diagnosis of CP can be made by 12 months of age, with high levels of awareness of the use of magnetic resonance imaging (94%), Prechtl's qualitative assessment of general movements (GMs) (70%) and Hammersmith Infant Neurological Examination (HINE) (77%). Only 40% were aware of the HINE optimality scoring. Fifty-four clinicians provided a diagnosis of CP as part of their role: 48% never used the GMs or HINE to assess children <1 year, and 57% never used the HINE for children between 1 and 2 years. Clinicians not providing a diagnosis within their professional role (n = 104) also indicated infrequent use of assessment tools with 74% and 54% never using the GM's or HINE (respectively) in their assessment of children at risk of CP. Barriers to use included lack of time and funding, lack of clear pathways and management support. CONCLUSION: Despite high awareness, current use of international best practice tools in NZ clinical practice appears low. Multiple barriers are reported to the use of these tools, which need to be addressed to improve the timeliness of diagnosis.


Assuntos
Paralisia Cerebral , Paralisia Cerebral/diagnóstico , Criança , Pré-Escolar , Estudos Transversais , Humanos , Lactente , Movimento , Exame Neurológico , Nova Zelândia
8.
J Behav Ther Exp Psychiatry ; 62: 80-87, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30261357

RESUMO

BACKGROUND AND OBJECTIVES: Embodiment theory proposes that motor processes are associated with emotions and cognitions. Previous research has shown that walking posture can influence affective memory bias. This study further investigated this theory by looking at the effects of an upright versus slumped walking posture on psychological and physiological states when faced with a psychological stressor. METHODS: Seventy-three healthy adults completed baseline self-report measures of affect, power, and sleepiness, and physiological measures of blood pressure, galvanic skin response, and skin temperature. After walking in their usual posture, the same self-report and physiological measures were obtained. Participants were then randomly allocated into one of two groups where they were asked to walk in either an upright posture or a slumped posture. While walking, participants underwent a psychological stressor. After experimental walking, the same self-report and physiological measures were obtained. RESULTS: The upright walking posture group showed significantly improved psychological states including less low arousal negative affect, less sleepiness, less pain and marginally greater feelings of power than the slumped walking posture group. Physiologically, the upright walking posture group showed significantly lower systolic blood pressure, galvanic skin response, and marginally lower skin temperature than the slumped walking posture group. LIMITATIONS: This was a short-term laboratory-based experiment and results may not generalise to other situations. CONCLUSIONS: Walking posture can affect both psychological and physiological states. Applications of these findings may have implications for improving mental and physiological health.


Assuntos
Postura/fisiologia , Estresse Psicológico/fisiopatologia , Caminhada/fisiologia , Adulto , Afeto , Feminino , Humanos , Masculino
9.
J Paediatr Child Health ; 51(2): 174-9, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25070721

RESUMO

AIMS: High referral volumes to paediatric orthopaedic surgeons create long clinic waiting lists. The use of extended scope roles for doctors and health professionals is one strategy to address these wait times. We completed a 6-month trial of a non-surgical paediatric orthopaedic physician role (NSP) to help manage non-urgent referrals to our service from local general practitioners (GPs). METHODS: For a 6-month period, the majority of non-urgent GP referrals were assessed by a US-trained NSP. Wait times were compared between this period and the same time period in the previous year. Family and referrer satisfaction was determined through postal surveys. RESULTS: Over the trial period, the NSP saw a total of 155 new patient referrals, which represented 49% of all non-urgent GP referrals for the period. Before the trial, only 75% of non-urgent referrals were seen within 131 days (19 weeks) with 10% waiting more than 215 days (31 weeks). By the end of the trial, 75% of referrals were seen within 55 days (8 weeks) and 90% within 61 days (9 weeks). The most common outcome was discharge with management advice. 12% of patients were referred on to an orthopaedic surgeon but only 1% went on to a surgical wait list. Families and referrers reported high levels of satisfaction and only three patients discharged by the NSP were referred back for orthopaedic surgeon review. CONCLUSION: The NSP role was effective at reducing clinic wait times for patients with non-urgent paediatric orthopaedic conditions, while maintaining family and referrer satisfaction.


Assuntos
Ortopedia , Pediatria , Médicos/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Cirurgiões/estatística & dados numéricos , Listas de Espera , Adulto , Agendamento de Consultas , Criança , Família/psicologia , Feminino , Humanos , Relações Interprofissionais , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente/estatística & dados numéricos , Especialização/estatística & dados numéricos , Fatores de Tempo
10.
Front Neurol ; 5: 117, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25071705

RESUMO

AIM: To explore the relationship between motor cortical and descending motor pathway reorganization, lesion type, and upper limb function in youth with unilateral cerebral palsy (CP). METHODS: Twenty participants with unilateral CP (mean age 15 ± 3 years; 11 males) completed a range of upper limb functional measures. Structural MRI, diffusion-weighted, and functional MRI were conducted to determine type and extent of brain lesion, descending white matter integrity, and whole-brain activity during affected hand use. Single pulse transcranial magnetic stimulation (TMS) (n = 12) was used to examine functional integrity of the corticospinal pathway as well as primary motor cortex intracortical and interhemispheric inhibition from motor-evoked potentials and silent periods. RESULTS: Fractional anisotropy measures within the posterior limb of the internal capsule were a predictor of upper limb function (R (2) = 0.41, F = 11.3, p = 0.004). Participants with periventricular lesions tended to have better upper limb function [F(2, 17) = 42.48, p < 0.0001]. Five participants with evidence of cortical reorganization and functional ipsilateral projections to their affected hand had worse upper limb function. Deficits in intracortical and interhemispheric inhibitory mechanisms were found in participants with worse upper limb function (Melbourne Assessment of Unilateral Upper Limb Function: Mann Whitney p = 0.02). CONCLUSION: Neuroimaging and TMS can provide useful information related to hand function of individuals with unilateral CP and may have potential to assist as a predictive tool and/or guide rehabilitation.

11.
J Pediatr Orthop B ; 23(5): 430-4, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24950105

RESUMO

Hip subluxation is common in children with cerebral palsy (CP). The aim of this study was to describe the radiological outcome of reconstructive hip surgery in children with CP, gross motor function classification system (GMFCS) level IV and V, and determine whether the GMFCS level plays a predictive role in outcome. This was a retrospective cohort study conducted at a tertiary-level pediatric hospital with a CP hip surveillance program. Of 110 children with GMFCS IV and V CP registered for hip surveillance, 45 underwent reconstructive hip surgery between 1997 and 2009, defined as varus derotational proximal femoral osteotomy with or without additional pelvic osteotomy. Eleven children were excluded because of lack of 12-month follow-up (n=10) or missing clinical records (n=1). Thus, 21 GMFCS IV children (median age 6 years at surgery) and 13 GMFCS V children (median age 5 years at surgery), who underwent 58 index surgeries, were included in the study. Clinical records and radiology were reviewed. The two surgical groups were femoral osteotomy (varus derotational femoral osteotomy with an AO blade plate or femoral locking plate fixation), or femoral ostetotomy with additional pelvic osteotomy. Reimer's migration percentage (MP) was calculated from anteroposterior pelvis radiographs to determine the outcome for each hip independently. Failure was defined as MP of greater than 60% or further operation on the hip. Reconstructive surgeries were performed for 58 hips with a median preoperative MP of 55%. There were 15 failures at a median of 62 months, including nine failures in 35 GMFCS IV hips and six failures in 23 GMFCS V hips. Overall, GMFCS V hips tended to fail earlier, (hazard ratio 2.3) with a median time to failure of 78 and 39 months for GMFCS IV and V hips, respectively. Combined femoral and pelvic osteotomies had the lowest failure rates in both groups of patients. The GMFCS classification may have some predictive value for outcomes following reconstructive hip surgery, with surgery for GMFCS V hips tending to fail earlier.


Assuntos
Paralisia Cerebral/complicações , Luxação do Quadril/cirurgia , Adolescente , Artroplastia , Criança , Pré-Escolar , Feminino , Luxação do Quadril/diagnóstico por imagem , Luxação do Quadril/etiologia , Humanos , Lactente , Masculino , Radiografia , Estudos Retrospectivos , Índice de Gravidade de Doença , Falha de Tratamento
12.
Dev Med Child Neurol ; 56(9): 808-14, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24673603

RESUMO

AIM: Lower limb surgery is often performed in ambulatory children with cerebral palsy (CP) to improve walking ability. This mapping review reports on outcome measures used in the published literature to assess surgical results, determine range and frequency of use, and map each measure to the International Classification of Functioning, Disability and Health. METHOD: A mapped review of literature published between 1990 and 2011 was carried out to identify papers reporting the outcomes of lower limb orthopaedic surgery in ambulatory children with CP, aged 0 to 20 years. RESULTS: A total of 229 published papers met the inclusion criteria. Thirty-two outcome measures with known psychometric properties were reported in the 229 papers. Twenty measures assess impairments in body structure and function and were used in 91% of studies. Ten measures assess restrictions in activity and participation and were used in 9% of papers. Two measures assessed quality of life. Since 1997, 29% of papers have used the Gross Motor Function Classification System to describe participants. INTERPRETATION: The body of literature evaluating outcomes of lower limb orthopaedic surgery in CP is small but increasing. There is a need to develop a suite of outcome measures that better reflect outcomes across the International Classification of Functioning, Disability and Health, including activity and participation.


Assuntos
Paralisia Cerebral/cirurgia , Extremidade Inferior/cirurgia , Procedimentos Ortopédicos , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Resultado do Tratamento , Adulto Jovem
13.
Phys Occup Ther Pediatr ; 34(2): 185-96, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-23651175

RESUMO

This study examined the relationship between walking performance rated on the Functional Mobility Scale (FMS) and measures of walking capacity in children with cerebral palsy (CP). A total of 143 participants with spastic CP (GMFCS levels I to III) were rated on the FMS and had assessment of self-selected walking speed (WS), fast 1 minute walk test (1MWT) and six minute walk test (6MWT). For each FMS distance, children rated 6 had significantly better 6MWT than children scored 5; children rated FMS 2, 3, or 4 had lower walking capacity measures but were not clearly distinguishable from each other. The 6MWT was an independent predictor of variation in FMS score, accounting for 20% to 27% of the variance across the three FMS distances. While walking capacity impacts on community mobility in children with CP much of the variance remains unexplained, suggesting that other factors play an important role.


Assuntos
Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/reabilitação , Avaliação da Deficiência , Crianças com Deficiência/reabilitação , Limitação da Mobilidade , Caminhada/fisiologia , Adolescente , Criança , Feminino , Humanos , Masculino , Estudos Retrospectivos , Adulto Jovem
14.
Health Psychol ; 32(6): 710-3, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22369490

RESUMO

OBJECTIVES: To investigate whether drawings of the self walking by children with cerebral palsy (CP) were associated with walking ability and illness perceptions. METHOD: This was an exploratory study in 52 children with CP (M:F = 28:24), mean age 11.1 years (range 5-18), who were attending tertiary level outpatient clinics. Children were asked to draw a picture of themselves walking. Drawing size and content was used to investigate associations with clinical walk tests and children's own perceptions of their CP assessed using a CP version of the Brief Illness Perception Questionnaire. RESULTS: Larger drawings of the self were associated with less distance traveled, higher emotional responses to CP, and lower perceptions of pain or discomfort, independent of age. A larger self-to-overall drawing height ratio was related to walking less distance. Drawings of the self confined within buildings and the absence of other figures were also associated with reduced walking ability. CONCLUSION: Drawing size and content can reflect walking ability, as well as symptom perceptions and distress. Drawings may be useful for clinicians to use with children with cerebral palsy to aid discussion about their condition.


Assuntos
Arte , Atitude Frente a Saúde , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Caminhada/fisiologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Dor/psicologia , Autoimagem , Estresse Psicológico/etiologia , Inquéritos e Questionários
15.
Disabil Rehabil ; 34(24): 2053-60, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22472118

RESUMO

PURPOSE: To assess an individual child's cognitive and emotional perceptions of their cerebral palsy (CP) and how these are associated with their reported life satisfaction and their functional walking ability. METHOD: Convenience sample of 48 children with cerebral palsy, GMFCS (Gross Motor Function Classification System) I-IV, mean age of 12.2 ± 2.5 years was recruited from tertiary level out-patient clinics. All children completed the Brief Illness Perception Questionnaire-Cerebral Palsy version (BIPQ-CP), Students' Life Satisfaction Scale (SLSS) and 1- and 6-min walk tests. RESULTS: Children with CP reported levels of global life satisfaction (mean score 31.4/42) equivalent to previous studies of typically developing children. Higher total SLSS scores were associated with lower concern about CP (rho = -0.61, p < 0.001), lower emotional impact (rho = -0.58, p < 0.001), fewer perceived consequences (rho = -0.53, p < 0.001) and perceptions of higher levels of personal control (rho = 0.40, p = 0.01). Multiple regression models using BIPQ-CP constructs found that a combination of lower level of concern and fewer perceived consequences predicted 46% of the variance in SLSS score (p < 0.001). GMFCS levels, walk distance and age were not significant predictors of life satisfaction. CONCLUSIONS: Life satisfaction in this group of children was strongly associated with a child's perceptions of their CP but was not associated with functional walking ability. Although the cross-sectional nature of the study precludes assumptions of causality, understanding children's cognitive and emotional beliefs about their cerebral palsy would seem to be an important adjunct to clinical management.


Assuntos
Paralisia Cerebral/psicologia , Percepção , Satisfação Pessoal , Qualidade de Vida , Caminhada , Atividades Cotidianas , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Destreza Motora , Pacientes Ambulatoriais , Análise de Regressão , Índice de Gravidade de Doença , Inquéritos e Questionários
16.
Arch Phys Med Rehabil ; 92(2): 265-70, 2011 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-21272723

RESUMO

OBJECTIVES: To test the strength of association between 2 clinic-based measures of walking ability, the 1-minute walk test (1MWT) and the six-minute walk test (6MWT), and the parental report of usual walking performance, measured by the ABILOCO-Kids logit score, in children with cerebral palsy (CP). DESIGN: Observational study. SETTING: Tertiary level outpatient clinics. PARTICIPANTS: Children and youth with CP (N=60; 32 boys, 28 girls; mean age, 11.2y [range, 5-18y]), Gross Motor Function Classification System (GMFCS) level I to IV. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The 10-item ABILOCO-Kids questionnaire, the 1MWT, and the 6MWT. RESULTS: ABILOCO-Kids logit scores were significantly correlated with the 1MWT (ρ=.70, P<.01) and the 6MWT (ρ=.70, P<.01) but not with age or sex. Linear models revealed a possibly significant difference in the strength of the relationship of the ABILOCO-Kids logit score with walking distance, depending on GMFCS level (P=.06 1MWT; P=.14 6MWT). The strongest relationship was observed at GMFCS level II, where ABILOCO-Kids score predicted 33% of variance in 1MWT (P=.003) and 31% of 6MWT (P=.003). The weakest relationship was at GMFCS level I, where ABILOCO-Kids score predicted only 5% of the variance in 1MWT (P=.33) and 16% of the variance in 6MWT (P=.08). CONCLUSIONS: Parental perceptions of their child's walking ability in the community correlate with clinic-based walking tests in ambulatory children with CP, providing evidence of convergent validity for the 1MWT and 6MWT. However, parents report a much wider range of walking abilities in children who function at a high level (GMFCS I) than is reflected by their walk test results.


Assuntos
Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/reabilitação , Pais , Caminhada/fisiologia , Adolescente , Criança , Pré-Escolar , Teste de Esforço , Feminino , Humanos , Masculino , Inquéritos e Questionários
17.
J Paediatr Child Health ; 46(11): 680-5, 2010 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-20796184

RESUMO

AIM: To pilot the use of the Craig Hospital Inventory of Environmental Factors (CHIEF) questionnaire to ascertain information regarding barriers to participation experienced by a sample of New Zealand children with cerebral palsy. METHODS: The CHIEF questionnaire was administered to parents/caregivers of a consecutive sample of 32 children with cerebral palsy attending a paediatric tertiary clinic in Auckland. Twenty-three children walked independently, 5 used walking aides and four used a wheelchair. Twenty-four of the 32 parent-respondents provided contextual feedback for their responses and wider issues relating to the topic. RESULTS: The barriers to participation most commonly reported by parents were attitudes at school (72%) and in the community (56%), difficulties accessing personal equipment (59%), and the natural environment and built surroundings (56%). Contextual information from families generally supported their answers to the questionnaire but highlighted that some parents had confused the 'not applicable' and 'never' options. Discrepancy between scores on the policy-related questions and later contextual feedback suggested that the policy subscale did not fully capture family concerns about limited availability of public funding for equipment, therapy, and educational support. CONCLUSIONS: The CHIEF instrument proved easy to use in a clinic setting. However, parent-respondent feedback highlighted the difficulties in interpreting responses to some items when the instrument is used in isolation to quantify environmental barriers to participation. The results highlight the need to develop research approaches and tools that can explore barriers to participation by children with cerebral palsy taking account of socio-economic and other relevant contextual information.


Assuntos
Atividades Cotidianas , Atitude Frente a Saúde , Paralisia Cerebral/psicologia , Planejamento Ambiental/normas , Meio Social , Adolescente , Paralisia Cerebral/fisiopatologia , Criança , Feminino , Humanos , Masculino , Nova Zelândia , Pais/psicologia , Percepção , Inquéritos e Questionários
18.
Arch Phys Med Rehabil ; 90(8): 1396-401, 2009 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-19651274

RESUMO

OBJECTIVE: To evaluate the sensitivity and specificity of the Intelligent Device for Energy Expenditure and Activity (IDEEA) monitor in detecting functional activities in young people with cerebral palsy (CP). DESIGN: Validation study. SETTING: Two identical data collections completed 1 week apart at a gait laboratory. PARTICIPANTS: Twenty-five young people with CP and 30 able-bodied (AB) peers (age 8-25 y; mean age CP 14.1 y, Gross Motor Function Classification System Level I-III; mean age AB, 14.2 y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Each participant completed 5 functional activities (sitting, lying, standing, walking, and stairs), with the monitor attached. The sensitivity and specificity of the monitor in detecting each activity was calculated by comparison to a written timed report. RESULTS: Sitting, lying, and standing were detected with median 100% sensitivity in both participant groups and across both testing sessions. Accuracy of walking detection was reduced compared with static activities (P<.05) across the 2 sessions and groups. The CP group had a significantly higher number of participants where the activity was not detected with 100% sensitivity (lie: 18% CP, 5% AB, P<.04; stand: 12% CP, 0% AB, P<.02; walk: 96% CP, 81% AB, P<.03). Stair climbing was detected in only half of the 12 participants with CP who could achieve the task. The IDEEA demonstrated high specificity (range, 97%-100%) for both participant groups. CONCLUSIONS: The IDEEA activity monitor had high levels of sensitivity and specificity in determining everyday static activities in participants with CP, with greater difficulties in detecting dynamic activities of walking and stair climbing.


Assuntos
Paralisia Cerebral/fisiopatologia , Monitorização Fisiológica/instrumentação , Aceleração , Adolescente , Fenômenos Biomecânicos , Criança , Desenho de Equipamento , Feminino , Humanos , Masculino , Nova Zelândia , Sensibilidade e Especificidade , Software , Estatísticas não Paramétricas , Adulto Jovem
19.
Arch Phys Med Rehabil ; 87(2): 207-15, 2006 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-16442974

RESUMO

OBJECTIVE: To define upper-limb movement deficits in children with hemiplegia using 3-dimensional (3-D) kinematic analysis of functional tasks. DESIGN: Cohort study. SETTING: University gait laboratory. PARTICIPANTS: Ten children with hemiplegic cerebral palsy (mean age, 13.3y; range, 10-17y) and 10 control children (mean age, 9.8y; range, 6-12y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: 3-D upper-limb movement analysis. RESULTS: 3-D kinematics detected clinically significant between-group differences. Children with hemiplegia were significantly slower than control children in time taken to complete tasks (P<.05) and achieved slower movement velocities (P<.05). Group differences in range of motion (ROM) occurred in all 3 tasks examined (hand to mouth, hand to head, reach). Children with hemiplegia had significantly less supination (P<.03) and shoulder flexion (P<.03) and increased compensatory trunk flexion (P<.01) compared with control data (hand-to-mouth task). The reach task highlighted restriction of elbow extension in children with hemiplegia (minimum elbow extension: hemiplegia, 24+/-18 degrees ; control, 3+/-7 degrees ). Completing tasks bilaterally did not alter performance of the tasks in children with hemiplegia. CONCLUSIONS: 3-D kinematics detected deficits in timing, ROM, and proximal compensatory strategies during upper-limb functional task performance in children with hemiplegia.


Assuntos
Paralisia Cerebral/fisiopatologia , Hemiplegia/fisiopatologia , Extremidade Superior/fisiopatologia , Adolescente , Fenômenos Biomecânicos , Paralisia Cerebral/reabilitação , Criança , Crianças com Deficiência , Feminino , Hemiplegia/reabilitação , Humanos , Masculino , Movimento , Análise e Desempenho de Tarefas
20.
Arch Phys Med Rehabil ; 86(12): 2337-41, 2005 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-16344032

RESUMO

OBJECTIVE: To assess the reliability and validity of a newly described classification of sagittal plane alignment in spastic diplegic gait. DESIGN: Twenty split-screen videos of children with spastic diplegia, Gross Motor Function Classification System levels I to III, were viewed on 2 occasions, 6 weeks apart, by 5 raters. The sagittal plane alignments of the right and left lower limbs in gait were classified separately as true equinus, jump knee, apparent equinus, or crouch, based on the published classification. A fifth category, nonclassifiable, was used if classification was not possible. We then used sagittal plane kinematic data to confirm the classification for each subject and these were compared with rater classification scores, which used the video information only. SETTING: Tertiary-level children's hospital. PARTICIPANTS: Three pediatric orthopedic surgeons and 2 pediatric orthopedic residents. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Gait classification scores derived from visual observation were compared among and within raters. The gait classification scores derived from visual observation were compared with the scores derived from sagittal plane kinematic data to assess validity. RESULTS: A moderate correlation was found among the 5 raters within each session, with an interrater weighted kappa score of .45 in session 1 and .49 in session 2. The intrarater, weighted kappa scores showed a moderate to substantial level of agreement between sessions, ranging from .50 to .68. The classification scores of individual raters had moderate validity when compared with classifications derived from the sagittal plane kinematic data. However, there was a substantial level of agreement between the consensus opinion and the classification obtained using the kinematic data as well as the video recordings (weighted kappa=0.8). CONCLUSIONS: This classification has only moderate reliability and validity when a single experienced rater views the 2-dimensional gait videos. However, the consensus opinion derived from the scores of 5 raters considerably improves the validity of the assessment.


Assuntos
Paralisia Cerebral/diagnóstico , Paralisia Cerebral/reabilitação , Avaliação da Deficiência , Marcha , Fenômenos Biomecânicos , Criança , Feminino , Humanos , Masculino , Variações Dependentes do Observador , Reprodutibilidade dos Testes , Gravação de Videoteipe
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