Validitet av Uganda versionen av Pediatric Evaluation of Disability Inventory (PEDI-UG) för användning för barn med hemiplegi cerebral pares.
Validitet av Uganda versionen av Pediatric Evaluation of Disability Inventory (PEDI-UG) för användning för barn med hemiplegi cerebral pares.
Project number : 200835
Created by: Ahmed Amer, 2016-08-16
Last revised by: Ahmed Amer, 2018-10-03
Project created in: FoU Region Örebro län

Not uppdated, final reminderNot uppdated, final reminder
2016-05-01
Rekrytering/datainsamling pågår

Titel och sammanfattning

Populärvetenskaplig sammanfattning

Barn med cerebral pares har ofta svårt att genomföra dagliga aktiviteter. Syftet med olika rehabiliteringsinsatser är att barnen ska utveckla största möjliga självständighet, kunna leva som de själva vill och ges samma möjligheter som andra barn. Det viktigt att rehabiliteringsprocessen baseras på de dagliga aktiviteter som barnen brukar genomföra därför det kommer reflektera barnets verkliga förmåga och utveckling status.

Pediatric Evaluation of Developmental Inventory (PEDI) är välkänd enkät som användas för utvärdering av barnets utveckling status och funktionsförmåga i dagliga aktiviteter. Dock i låg och medelinkomstländer som Uganda och andra subsahariska länder finns brist på utvärdering instrumenten som ar anpassade for miljön och kultur for att utvärdera dagliga aktiviteter. En Uganda version av PEDI (PEDI_UG) har anpassats för att fylla bristen. Den tidigare studien om PEDI-UG bekräftades att instrumentet är valid och reliabel för att används för Uganda typiskt utvecklade barn. Författarna i den tidigare studie rekommenderade studier som undersöker validitet och test-retest reliabilitet av PEDI-UG för barn med CP och som undersöker Smallest Detectable Difference (SDD) för att underlätta klinisk användning av instrumentet. Validitet studie av PEDI-UG för barn med CP kan hjälpa till behandlingsplan, att visa utveckling status för Uganda barn med CP och andra liknande subsahariska länder och detta kan leda till håg habilitering intervention.

Projektspecifik information

Ämnesord

checked Arbetsterapi


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Studietyp

Observationsstudie

Fas

I

Randomiserad studie

Ja

Diagnoskod för huvuddiagnos

G80-G83 Cerebral pares och andra förlamningssyndrom

Multicenterstudie

Ja

Inklusionsstatus

 Planerat antalAntal tillfrågadeScreen-failureAntal randominserade
n=200   

Vetenskaplig sammanfattning

Abstrakt (Svenska)

Barn med cerebral pares har ofta svårt att genomföra dagliga aktiviteter. Syftet med olika rehabiliteringsinsatser är att barnen ska utveckla största möjliga självständighet, kunna leva som de själva vill och ges samma möjligheter som andra barn. En viktig aspekt är att barnen ska kunna genomföra dagliga aktiviteter i sin vanliga miljö och inte bara inom habiliteringskliniken. Därför är det viktigt att rehabiliteringsprocessen baseras på de dagliga aktiviteter som reflekterar barnets verkliga förmåga och utveckling status.

Pediatric Evaluation of Developmental Inventory (PEDI) är välkänd enkät som användas för utvärdering av barnets utveckling status och funktionsförmåga i dagliga aktiviteter. Dock i låg och medelinkomstländer som Uganda och andra subsahariska länder finns brist på utvärdering instrumenten som ar anpassade for miljön och kultur for att utvärdera dagliga aktiviteter. En Uganda version av PEDI (PEDI_UG) har anpassats för att fylla bristen. Den tidigare studien om PEDI-UG bekräftades att instrumentet är valid och reliabel för att används för Uganda typiskt utvecklade barn. Författarna i den tidigare studie rekommenderade studier som undersöker validitet och test-retest reliabilitet av PEDI-UG för barn med CP och som undersöker Smallest Detectable Difference (SDD) för att underlätta klinisk användning av instrumentet. Validitet studie av PEDI-UG för barn med CP kan hjälpa till behandlingsplan, att visa utveckling status för Uganda barn med CP och andra liknande subsahariska länder och detta kan leda till håg habilitering intervention.

Background

Children with disability in developing countries represent about 80% of children with disability in the world (1), majority of them live in Sub-Saharan Africa (2). It was estimated that about 2.5 million children in Uganda live with some type of disability (3). Cerebral Palsy is the most common chronic neurological disability in early childhood and more prevalent in poor socioeconomic status (4). In Uganda, the prevalence of CP is not well established, but it is expected to be high due to high maternal and infant mortality rate (3).

Rehabilitation intervention has an important role in the treatment program for children with disability e.g. CP. The main aim of the rehabilitation is to reach the optimal physical, intellectual, psychological and social functional levels (5) which will enable children to perform daily life activities as dependent as possible. Based on the International classification of functioning (ICF), the health conditions related directly to individual’s health and to environmental and personal factors (3) which gives an indication for the importance of evaluation of child’s ability in his /her environment to get a better understanding for child’s functional level and his/her ability in daily life activities.

The assessment instrument that will be used in evaluation and rehabilitation process should take in account these factors to give a comprehensive view for the child. One of these instruments is the Pediatric Evaluation of Disability Inventory (PEDI) which is a comprehensive clinical assessment tool that evaluates the functional performance and level of assistance required in daily life activity for children with disability aged between 6 months-7.5 year she (6, 7). PEDI was developed and validated in a North American context (8) It consist 197 functional skills item and 20 items to assess caregiver assistance and modifications.

PEDI can be used mainly to detect if the deficit or delay exists due to functional status development and if so to define which extent and content area of the deficit or delay and also as an evaluative instrument to monitor rehabilitation progress for the child(3, 8).

The PEDI is considered as a gold standard instrument and due to its importance for therapeutic programs, but it should be adapted before use in another contexts (9) as it was done in another studies (6, 10-12). Before 2016 there was no translated and adapted version for African, where the highest percentage of children with disability located there. Kakooza-Mwesige et al. translated and culturally adapted Uganda version of PEDI (PEDI-UG) (13) and Ahmed et al. investigated the psychometric properties of PEDI-UG for typically developed children, in line with the development of the original PEDI, to create reference values to which results from children with disabilities, for example children with hemiplegic CP, can be compared (14). The study suggested that 7 items should be deleted from PEDI-UG and the rating scale should be reduced from 6 categories to 4 (14). The revised version needs further validation, especially with children with CP. In addition, investigating PEDI-UG in children with disability has never been done. An additional aspect for clinical use is to detect the smallest real changes that can be consider as a real change in the child functional performance level as it done in other studies, this called Smallest Detectable Changes (SDD)(11, 15, 16).

Syfte

The overall purpose is to investigate the psychometric properties for Uganda version of PEDI (PEDI-UG) that can be used for children with hemiplegic CP.

Additional purpose is to investigate the smallest detectable differences (SDD) that may enhance clinical evaluation for children with hemiplegic CP.

Frågställningar:

The specific research questions that will be investigated for PEDI-UG:

  • Do the items under each scale measure only one dimension (unidimensionality)?
  • Do the rating scales work as expected (category functioning)?
  • Do repeated measurements give stable answers (test-retest reliability)?
  • What is the smallest difference between two occasions that reflect a real change (smallest detectable change)?

Metod: Urval/Studiegrupper

The minimum recommended number of participants to obtain stable item calibrations in Rasch analysis is 100 individuals (17). Hence, 100 Ugandan children will be recruited in data collection; their ages will range from 6 months to 7.5 years. To investigate the test-retest reliability the desired value for ICC is 0.8 however, the lowest acceptable value is 0.6, so the number of answers for each occasion is at least 39 (18).

Metod: Genusperspektiv

Both boys and girls will be invited to participate in the studies, there is no criterion for the participants’ sex.

Metod: Intervention, datainsamling och mätmetoder

Instrumentation

The PEDI-UG is an adapted version of the original PEDI, it was investigated for linguist and cross-cultural validity as well as for psychometric properties for typically developed children in previous studies (13, 14). PEDI-UG consists two main parts: i) Functional skills that contains 185 items answered on a dichotomous scale (Able or Unable) and ii) Caregiver assistance part that contains 20 items answered on a 0-3 rating scale. Each part is divided into three domains; Self-care, Mobility and Social function. The PEDI-UG can be used as self-report or as proxy measure where the parents or other caregivers can answer the Functional Skills part on behalf of the child. The Caregiver assistance part is always answered by the caregiver.

Procedure

Part of data was collected between April 2015 and March 2016 and we will continue data collection after we renew ethical approval; it is expected to be in October 2016.

Participants will be recruited from one area outside Kampala, Uganda. During a regular visit, a physiotherapist will ask the potential participants for inclusion in the study. The participants will get oral and written information about the study and after they accept and sign the consents, they will answer the PEDI-UG. A group of participant, at least 30, will be asked to answer PEDI-UG again after two weeks from the first occasion.

Metod: Databearbetning och analys

Rasch analysis will be performed for analyzing PEDI-UG domains: 3 under Functional skills part and 3 under Caregiver assistance part. Each domain will be analyzed separately. The Rasch program WINSTEPS 7.81(19) will be used for the analyses. The dichotomous model will be used to analyze the domains under the Functional skills part as the answers for its items is Able or Unable. The Rating Scale Model is selected for the analysis of the Caregiver assistance part as this domain include a 4-step category scale (0-3) (20, 21).

The validity evidence for PEDI-UG will be investigated based on five aspects: I) Item fit; the data are considered to usefully fit the Rasch model if at least 95 % of the items have an infit Mean-square (MnSq) within 0.5 -1.5 (22-24) , II) Unidimensionality by using Principle Component Analysis (PCA) of residuals (25, 26) and the Positive Point Measure Analysis correlation (PTMA); a positive PTMA indicates that items contribute positively to the total raw score (8, 27),III) Reliability and separation of persons and items (25, 27), IV) Targeting between each domain and the respondents by investigating the distance between item and person means, and ceiling and floor effects (28), and V) Rating scale functioning (not applicable for the dichotomous Rasch model) (29).

Test-retest reliability will be investigated by calculating the intraclass correlation coefficient (ICC; two-way mixed model for absolute agreement).

SDD will be Cal ululated based on the following formula (16):

SDD= SEM * 1.96 * √ (2)

Where SEM is Standard error of measurement; SEM= SD √ (ICC (1-ICC)).

Ahmed will be responsible for data handling and analysis, presentation of the results and writing of the first draft of the manuscript to be discussed with the coauthors.

Betydelse/Förväntat resultat

The study is expected to answer if the PEDI-UG is valid and reliable instruments to be used for children with hemiplegic CP in Uganda context to evaluate functional performance and ability in daily live activities. This will provide an important contribution for studying, planning and evaluating rehabilitation interventions for children with disability in context that has lack in culturally adapted and validated instruments to be used in the rehabilitation sittings.

Involverade parter

Arbetsplats

Added workplaces

Regioner - Region Örebro Län - Hälso- och sjukvård - Forskning och utbildning - Universitetssjukvårdens forskningscentrum workplace verified by Region Örebro län on 2018-06-14

Supervisor

Ann-Christin Eliasson
Stockholms läns landsting
Gustav Jarl
Leg. ortopedingenjör, docent, Ortopedteknik, Universitetssjukvårdens forskningscentrum
Liselotte Norling Hermansson
Arbetsterapeut, forskningsledare, Universitetssjukvårdens forskningscentrum, Ortopedteknik, Kumla vårdcentral

Validitet av Uganda versionen av Pediatric Evaluation of Disability Inventory (PEDI-UG) för användning för barn med hemiplegi cerebral pares., from FoU Region Örebro län
http://www.researchweb.org/is/en/fourol/project/200835