Professional Documents
Culture Documents
1 UO Neurologia Dello Sviluppo, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. 2 The Dubowitz Neuromuscular Centre, UCL NIHR GOSH Biomedical
Research Centre, Great Ormond Street Institute of Child Health, London, UK. 3 Centre of Child Neuro-Ophthalmology, Unit of Child Neurology and Psychiatry, IRCCS
Mondino Foundation, Pavia; 4 Department of Developmental Neuroscience, IRCCS Stella Maris Foundation, Pisa; 5 Child and Adolescent Neurology and Psychiatry
Unit, Children Hospital, ASST Spedali Civili of Brescia, Brescia; 6 Department of Research and Clinical Development, Scientific Directorate, Fondazione IRCCS Istituto
Neurologico Carlo Besta, Milan; 7 Pediatric Neurology Unit, Fondazione Policlinico Universitario A Gemelli IRCCS, Rome; 8 National Centre of Services and Research
for Prevention of Blindness and Rehabilitation of Visually Impaired, Rome, Italy.
Correspondence to Giovanni Baranello, UO Neurologia dello Sviluppo, Fondazione IRCCS Istituto Neurologico Carlo Besta, Via Celoria 11, Milan 20133, Italy.
E-mail: giovanni.baranello@istituto-besta.it
*Additional members of the VFCS Study Group can be found in the Acknowledgements.
This article is commented on by Rosenbaum on page 14 of this issue.
PUBLICATION DATA AIM To develop and validate the Visual Function Classification System (VFCS), which was
Accepted for publication 10th April 2019. created to classify how children with cerebral palsy (CP) use visual abilities in daily life.
Published online 10th June 2019. METHOD The process of development and validation of the VFCS involved four phases: (1)
drafting of the five levels from the analysis of literature and clinical experience; (2) validation
ABBREVIATIONS of constructs and revision of the levels for concept meaningfulness, using nominal group
ASD Autism spectrum disorder process; (3) refinement by international Delphi survey; and (4) assessment of interrater
CFCS Communication Function reliability among professionals and with caregivers, and of test–retest reliability.
Classification System RESULTS Five nominal groups involved 29 participants; 65 people completed the first round
EDACS Eating and Drinking Ability and 51 the second round of the Delphi survey. Construct validity was demonstrated within an
Classification System expert group and external validation through several stakeholders, with the involvement of
ICF International Classification of patients and families to ensure meaningfulness of the concept. Discussions continued until
Functioning, Disability and consensus was reached about the construct and content of the five levels. Participants in the
Health reliability study included 29 professionals, 39 parents, and a total sample of 160 children with
MACS Manual Ability Classification CP (mean age [SD] 6y 6mo [3y 4mo]; median 5y 7mo, range 1–19y). Absolute interrater
System agreement among professionals was 86% (weighted j=0.88; 95% confidence interval [CI] 0.83–
VFCS Visual Function Classification 0.93). Test–retest reliability was high (weighted j=0.97; 95% CI 0.95–0.99). Parent–professional
System interrater reliability on 39 children was moderate (weighted j=0.51; 95% CI 0.39–0.63).
INTERPRETATION The VFCS has been appropriately constructed and provides a reliable
system to classify visual abilities of children with CP both in clinical and in research settings.
Some degree of visual impairment is reported to affect up behaviour, may impact daily life of children with CP even
to half of the children with cerebral palsy (CP), either as a more than the motor disorder per se.8–10 Surprisingly, it is
consequence of the brain damage itself, or because of the still common that the assessment of vision relies only on
involvement of peripheral visual structures, or as a combi- the ophthalmological examination, and only rarely on the
nation of both.1–7 This is also clearly stated in the new functional evaluation of different aspects of visual abilities,
definition of CP, which suggests that the visual–perceptual namely how the child performs in vision-related activi-
disorders, along with the motor disorder, are an integral ties.9–13 Therefore, children with CP often start rehabilita-
part of the clinical picture of CP.8 Although motor impair- tion programmes without specific information on their
ment is a requirement for the diagnosis of CP, the so- visual functioning available to their therapists.14,15 The
called associated disorders, such as disturbances of World Health Organization’s International Classification
sensation, perception, cognition, communication, and of Functioning, Disability and Health (ICF) highlights
[Correction added on 26 December 2019 after first online publication: the affiliation for author Francesca Tinelli has
been changed from 3 to 4 in this version.]
I 19 3 0 0 0 22
RESULTS II 7 36 4 0 0 47
Phase 2 III 0 2 50 5 0 57
Phase 2 provided initial external validation of the VFCS. IV 0 0 1 29 0 30
V 0 0 0 0 4 4
The nominal group process used feedback from group par- Total 26 41 55 34 4 160
ticipants leading to a dynamic revision of the VFCS. The Professional interrater reliability on 160 children, 29 professionals
modifications receiving the most votes from that nominal involved (weighted j=0.88; 95% CI 0.83–0.93). Absolute agreement
86%.
group were incorporated into the next revision. This process
continued until the last nominal group reached a consensus Time 2 VFCS classification, n
about the concepts and simply suggested wording changes. Time 1 VFCS
An important result of this phase was the clear descrip- classification, n I II III IV V Total
Table IV: General summary headings for the GMFCS, MACS, CFCS, EDACS, and VFCS
I Walks without Handles objects easily Sends and receives with Eats and drinks safely Uses visual function easily
limitations and successfully familiar and unfamiliar and efficiently and successfully in vision-
partners effectively and related activities
efficiently
II Walks with Handles most objects but Sends and receives with Eats and drinks safely Uses visual function
limitations with somewhat reduced familiar and unfamiliar but with some successfully but needs self-
quality and/or speed of partners but may need limitations to efficiency initiated compensatory
achievement extra time strategies
III Walks using a Handles objects with Sends and receives with Eats and drinks with Uses visual function but
hand-held difficulty; needs help to familiar partners some limitations to needs some adaptations
mobility device prepare and/or modify effectively, but not with safety; there may be
activities unfamiliar partners limitations to efficiency
IV Self-mobility Handles a limited Inconsistently sends Eats and drinks with Uses visual function in very
with selection of easily and/or receives even significant limitations to adapted environments but
limitations; managed objects in with familiar partners safety performs just part of vision-
may use adapted situations related activities
powered
mobility
V Transported in a Does not handle objects Seldom effectively sends Unable to eat and drink Does not use visual function
manual and has severely limited and receives, even with safely – tube feeding even in very adapted
wheelchair ability to perform even familiar partners may be considered to environments
simple actions provide nutrition
GMFCS, Gross Motor Function Classification System; MACS, Manual Ability Classification System; CFCS, Communication Function Classifi-
cation System; EDACS, Eating and Drinking Ability Classification System; VFCS, Visual Function Classification System.
REFERENCES
1. Ego A, Lidzba K, Brovedani P, et al. Visual-perceptual ment on the everyday life of cerebral palsied children. 21. Hidecker MJ, Paneth N, Rosenbaum PL, et al. Devel-
impairment in children with cerebral palsy: a systematic Child Care Health Dev 1993; 19: 411–23. oping and validating the Communication Function
review. Dev Med Child Neurol 2015; 57(Suppl 2): 46–51. 11. Colenbrander A. Aspects of vision loss-visual functions Classification System for individuals with cerebral palsy.
2. Fazzi E, Signorini SG, LA Piana R, et al. Neuro-oph- and functional vision. Vis Impair Res 2003; 5: 115–36. Dev Med Child Neurol 2011; 53: 704–10.
thalmological disorders in cerebral palsy: ophthalmo- 12. Hyvarinen L, Jacob N. What and How Does this Child 22. Sellers D, Mandy A, Pennington L, Hankins M, Morris
logical, oculomotor, and visual aspects. Dev Med Child See? Helsinki, Finland: VISTEST, 2011. C. Development and reliability of a system to classify
Neurol 2012; 54: 730–6. 13. James S, Ziviani J, Ware RS, Boyd RN. Relationships the eating and drinking ability of people with cerebral
3. Dufresne D, Dagenais L, Shevell MI; REPACQ Con- between activities of daily living, upper limb function, and palsy. Dev Med Child Neurol 2014; 56: 245–51.
sortium. Spectrum of visual disorders in a population- visual perception in children and adolescents with unilat- 23. Rosenbaum P, Eliasson AC, Hidecker MJ, Palisano RJ.
based cerebral palsy cohort. Pediatr Neurol 2014; 50: eral cerebral palsy. Dev Med Child Neurol 2015; 57: 852–7. Classification in childhood disability: focusing on func-
324–8. 14. Colenbrander A. Assessment of functional vision and its tion in the 21st century. J Child Neurol 2014; 29: 1036–
4. Dutton GN, Bax M. Visual Impairment in Children rehabilitation. Acta Ophthalmol 2010; 88: 163–73. 45.
Due to Damage to the Brain. Clinics in Developmental 15. Dutton GN, Calvert J, Cockburn D, Ibrahim H, Mac- 24. Deramore Denver B, Froude E, Rosenbaum P, Wilkes-
Medicine No. London: Mac Keith Press, 2010: 186. intyre-Beon C. Visual disorders in children with cere- Gillan S, Imms C. Measurement of visual ability in
5. Ortibus E, Laenen A, Verhoeven J, et al. Screening for bral palsy: the implications for rehabilitation programs children with cerebral palsy: a systematic review. Dev
cerebral visual impairment: value of a CVI question- and school work. East J Med 2012; 17: 178–87. Med Child Neurol 2016; 58: 1016–29.
naire. Neuropediatrics 2011; 42: 138–47. 16. World Health Organization. International Classification 25. Deramore Denver B, Adolfsson M, Froude E,
6. Ferziger NB, Nemet P, Brezner A, Feldman R, Galili of Functioning, Disability and Health: ICF. Geneva: Rosenbaum P, Imms C. Methods for conceptualising
G, Zivotofsky AZ. Visual assessment in children with World Health Organization, 2001. ‘visual ability’ as a measurable construct in children
cerebral palsy: implementation of a functional question- 17. World Health Organization. International Classification with cerebral palsy. BMC Med Res Methodol 2017;
naire. Dev Med Child Neurol 2011; 53: 422–8. of Functioning, Disability, and Health: Children & 17: 46.
7. Salavati M, Rameckers EA, Steenbergen B, van der Youth Version: ICF-CY. Geneva: World Health Orga- 26. Fink A, Kosecoff J, Chassin M, Brook RH. Consensus
Schans C. Gross motor function, functional skills and nization, 2007. methods: characteristics and guidelines for use. Am J
caregiver assistance in children with spastic cerebral 18. Rosenbaum P, Stewart D. The World Health Organi- Public Health 1984; 74: 979–83.
palsy (CP) with and without cerebral visual impairment zation International Classification of Functioning, Dis- 27. Delbecq A, Van de Ven A, Gustafson D. Group Tech-
(CVI). Eur J Physiother 2014; 16: 159–67. ability, and Health: a model to guide clinical thinking, niques for Program Planning – A Guide to Nominal
8. Rosenbaum P, Paneth N, Leviton A, et al. A report: practice and research in the field of cerebral palsy. Group and Delphi Processes. Chicago, IL: Scott,
the definition and classification of cerebral palsy April Semin Pediatr Neurol 2004; 11: 5–10. Foresman, 1975.
2006. Dev Med Child Neurol Suppl 2007; 109: 8–14. 19. Palisano R, Rosenbaum P, Walter S, Russell D, Wood 28. Linstone H, Turoff M, editors. The Delphi Method:
9. Delacy MJ, Reid SM; Australian Cerebral Palsy Regis- E, Galuppi B. Development and reliability of a system Techniques and Applications. [Internet]. Newark, NJ:
ter Group. Profile of associated impairments at age 5 to classify gross motor function of children with cere- Addison-Wesley, 1975; published online 2002. Available
years in Australia by cerebral palsy subtype and Gross bral palsy. Dev Med Child Neurol 1997; 39: 214–23. from: http://is.njit.edu/pubs/delphibook (accessed 29
Motor Function Classification System level for birth 20. Eliasson AC, Krumlinde-Sundholm L, R€
osblad B, et al. January 2016).
years 1996 to 2005. Dev Med Child Neurol 2016; 58 The Manual Ability Classification System (MACS) for 29. Landis JR, Koch GG. The measurement of agreement
(Suppl 2): 50–6. children with cerebral palsy: scale development and evi- for categorical data. Biometrics 1977; 33: 159–74.
10. Schenk-Rootlieb A, Nieuwenhuizen O, Schiemanck N, dence of validity and reliability. Dev Med Child Neurol 30. Cohen J. A coefficient of agreement for nominal scales.
Graaf Y, Willemse J. Impact of cerebral visual impair- 2007; 48: 549–54. Educ Psychol Measur 1960; 20: 37–46.
Editor’s Choice
My Editor’s choice for the January 2020 issue is the newly developed Visual Function Classification System (VFCS). This issue features other
important papers on vision. I hope the VFCS will usefully complement the existing family of classifications systems for gross motor function-
ing, manual ability, communication, and eating and drinking in children with cerebral palsy.
RESUMEN
DE LA FUNCION
SISTEMA DE CLASIFICACION VISUAL PARA NINOS
~
CON PARALISIS
CEREBRAL: DESARROLLO Y VALIDACION
OBJETIVO Desarrollar y validar el Sistema de Clasificacio n de la Funcio n Visual (VFCS, siglas en ingles), que fue creado para
clasificar co mo los nin ~ os con para
lisis cerebral (PC) usan las habilidades visuales en la vida diaria.
METODO El proceso de desarrollo y validacio n del VFCS involucro cuatro fases: (1) elaboracio n de los cinco niveles a partir del
ana lisis de la literatura y la experiencia clınica; (2) la validacio n de constructos y la revisio n de los niveles para el significado de
los conceptos, utilizando un proceso de grupo nominal; (3) refinamiento por encuesta internacional de Delphi; (4) evaluacio n de la
confiabilidad entre evaluadores entre profesionales y con los cuidadores, y de confiabilidad de prueba y reevaluacio n
RESULTADOS Cinco grupos nominales incluyeron 29 participantes; 65 personas completaron la primera ronda y 51 la segunda
ronda de la encuesta de Delphi. La validez de constructo se demostro dentro de un grupo de expertos y una validacio n externa a
trave s de varias partes interesadas, con la participacio n de los pacientes y las familias para garantizar el significado del concepto.
Las discusiones continuaron hasta que se llego a un consenso sobre el constructo y el contenido de los cinco niveles. Los
participantes en el estudio de confiabilidad incluyeron 29 profesionales, 39 padres y una muestra total de 160 nin ~ os con PC (edad
media [DS] 6 an ~ os 6 meses [3 an ~ os 4 meses]; mediana 5 an ~ os 7 meses, rango 1-19 an ~ os). El acuerdo de evaluador absoluto entre
profesionales fue del 86% (j ponderada = 0,88; intervalo de confianza del 95% [IC] 0,83-0,93). La fiabilidad de Test-Retest fue alta
(j ponderada = 0,97; IC del 95%: 0,95 a 0,99). La confiabilidad entre los padres y profesionales entre 39 nin ~ os fue moderada
(ponderada j = 0,51; IC del 95%: 0,39 a 0,63).
INTERPRETACION El VFCS se ha construido de manera adecuada y proporciona un sistema confiable para clasificar las habilidades
visuales de los nin ~ os con PC, tanto en el a mbito clınico como en el de investigacio n.
RESUMO
SISTEMA DE CLASSIFICAC ~ DA FUNC
ß AO ~ VISUAL PARA CRIANC
ß AO ß AS COM PARALISIA CEREBRAL: DESENVOLVIMENTO E VALIDAC ~
ß AO
OBJETIVO Desenvolver e validar o Sistema de Classificacßa~o da Funcßa~o Visual (SCFV), que foi criado para classificar como criancßas
com paralisia cerebral (PC) usam capacidades visuais na vida dia ria.
METODO O processo de desenvolvimento e validacßa~o do SCFV envolve quatro fases: (1) rascunho dos cinco nıveis a partir da
ana lise da literatura e experie ~o de construtos e revisa
^ ncia clınica; (2) validacßa ~o dos nıveis de significa
^ncia dos conceitos, usando
processo nominal de grupos; (3) refinamento por meio de levantamento Delphi internacional; (4) avaliacßa ~ o da confiabilidade inter-
examinadores entre profissionais e cuidadores, e confiabilidade teste-reteste.
RESULTADOS Cinco grupos nominais envolveram 29 participantes; 65 pessoas completaram a primeira rodada e 51 a segunda
rodada do levantamento Delphi. A validade de constructo foi demonstrada em um grupo de especialistas, e a validade externa
por meio de va rios interessados, com envolvimento de pacientes e famılias para assegurar a significa ^ncia do conceito. As
discusso ~ es continuaram ate que fosse atingido consenso sobre o constructo e o conteu do dos cinco nıveis. Os participantes no
estudo de confiabilidade incluıram 29 profissionais, 39 pais e uma amostra total de 160 criancßas com PC (me dia de idade [DP] 6a
6m [3a 4m]; mediana 5a 7m, variacßa ~ o 1–19a). A confiabilidade inter-examinadores absoluta entre profissionais foi 86% (j
ponderado=0,88; intervalo de confiancßa [IC] a 95% 0,83–0,93). A confiabilidade teste-reteste foi alta (j ponderado =0,97; IC 95%
0,95–0,99). A confiabilidade inter-examinadores pais–profissionais em 39 criancßas foi moderada (j ponderado =0,51; IC 95% 0,39–
0,63).
INTERPRETAC ~ O SCFV foi elaborado apropriadamente e e um sistema confiavel para classificar as capacidades visuais de
ß AO
criancßas com PC em ambientes clınicos e acade ^micos.