2. Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P.

Reliability in the ratings of quality of life between parents and

their children of school age with cerebral palsy. Qual Life Res

2008; 17: 1163–71.

3. Parkinson KN, Rice H, Young B. Incorporating children’s

and their parents’ perspectives into condition-specific quality-

of-life instruments for children with cerebral palsy: a qualita-

tive study. Value Health 2011; 14: 705–11.

4. Fuhrer MJ. Subjectifying quality of life as a medical rehabilita-

tion outcome. Disabil Rehabil 2000; 22: 481–9.

5. Verschuren O, Ketelaar M, Gorter JW, Helders PJ, Uiterwaal

CS, Takken T. Exercise training program in children and ado-

lescents with cerebral palsy: a randomized controlled trial.

Arch Pediatr Adolesc Med 2007; 161: 1075–81.

6. Saleh MN, Korner-Bitensky N, Snider L, et al. Actual vs. best

practices for young children with cerebral palsy: a survey of

paediatric occupational therapists and physical therapists in

Quebec, Canada. Dev Neurorehabil 2008; 11: 60–80.

7. Dwyer G, Baur L, Higgs J, Hardy L. Promoting children’s

health and well-being: broadening the therapy perspective.

Phys Occup Ther Pediatr 2009; 29: 27–43.

8. Goodgold S. Wellness promotion beliefs and practices of

pediatric physical therapists. Pediatr Phys Ther 2005; 17: 148–

57.

Motor function after dorsal rhizotomyJOHN MCLAUGHLINSeattle Children's Hospital – Neurodevelopmental Program, Seattle, WA, USA.

doi: 10.1111/j.1469-8749.2012.04255.x

This commentary is on the original article by Josenby et al. on pages429–435 of this issue.

Josenby et al.1 have set a standard for longitudinal studies ofinterventions intended to improve the capacity and perfor-mance of children with cerebral palsy when they reach adult-hood. The authors have carefully followed their cohort for10 years and have used the International Classification ofFunctioning, Disability and Health (ICF) framework to guideselection of outcome measures. Valid and reliable measures ofstructure, function, and activity and participation are included.The Gross Motor Function Classification System (GMFCS)makes it easy for the reader to understand the abilities of thesample. The comprehensive treatment of mobility is reportedso the reader knows what other modalities (physiotherapy,orthopaedic surgery, etc.) have been brought to bear. Theresults show that spasticity is permanently reduced and func-tion is modestly improved. No patient improved GMFCSlevel during the 10 years. The data are presented in a visualmanner that makes it easy to appreciate both the group resultsand the variation among individual patients. The authorsemphasize that the children received dorsal rhizotomy in thecontext of long-term follow-up and continued treatment.They allude to the use of other modalities together with a fall-ing incidence of spastic diplegia in their region (if only the lat-ter were true in more places!) to account for a relatively smallnumber of rhizotomies in their subsequent practice.

All centers need to emulate this work. It is unlikely thatadditional proposals for randomized clinical trials (RCTs) ofdorsal rhizotomy, intrathecal baclofen pumps, orthopaedicsurgeries, or other existing treatments would succeed becauseof resistance to randomization, cost, and the low priority gen-erally accorded developmental disabilities by major fundingagencies. Regardless, once short-term safety and efficacy of anintervention are established, long-term functional outcomesare most important. RCTs are inherently short-term and arefocused on a single intervention. Given the heterogeneity of

cerebral palsy, it may make sense to prioritize studies of theoverall patterns of care rather than individual interventions.Josenby et al. provide that context while focusing onrhizotomy.

Multicenter studies using common definitions and outcomemeasures will be more powerful. Participating centers willhave a better basis for evaluating results than this study whichused the Ontario Motor Growth cohort as a comparison.2 Iflarge numbers of children with cerebral palsy are registered inlong-term prospective cohort studies using a manageablenumber of common, clinically-useful outcome measures ofstructure, function, activity and participation, it will becomeclear, even over a short 5-year initial grant period, whethersome interventions are beneficial or harmful. Adequately pow-ered sample sizes of sufficiently homogeneous participantscould be readily recruited for RCTs focused on critical newinterventions. Over a decade, the incredible variability of cur-rent practice would coalesce around standardized, more effec-tive team care. Children might even start improving GMFCSlevel.

Most of this should sound familiar. The successful work ofthe CanChild group,2 the North American Growth in CerebralPalsy Project,3 the International Workshop on Definition andClassification of Cerebral Palsy,4 and the Task Force onChildhood Motor Disorders5 are in the literature. The Sur-veillance of Cerebral Palsy in Europe project is ongoing.6 OurAustralian colleagues also know how to improve practice.7

The Shrine system, Gillette Children’s Hospital, and manyother orthopaedic centers are hard at work. There are manymore skilled investigators in the field than was the case twodecades ago. It remains to disseminate recent advances in defi-nition and measurement widely and to have a positive impacton public policy to enhance funding for research and clinicalservices.

If most centers could emulate Josenby et al. and coalesceinto ongoing multicenter networks allied with families andadvocates, the field of care for cerebral palsy and other neuro-developmental disabilities can achieve successes on the order ofthose achieved in childhood cancer and cystic fibrosis. Our col-leagues who focus on autism are showing the way and the restof us can set a higher bar on behalf of the children we serve.

Commentaries 389

REFERENCES

1. Josenby A, Wagner P, Jarnlo G, Westbom L, Nordmark E.

Motor function after selective dorsal rhizotomy: a 10-year prac-

tice-based follow-up study. Dev Med Child Neurol 2012; 54:

429–35. DOI: 10.1111/j.1469-8749.2012.04258.x.

2. Rosenbaum PL, Walter SD, Hanna SE, et al. Prognosis for

gross motor function in cerebral palsy: creation of motor

development curves. JAMA 2002; 288: 1357–63.

3. Stevenson RD, Conaway M, Chumlea WC, et al. Growth

and health in children with moderate-to-severe cerebral palsy.

Pediatrics 2006; 118: 1010–8.

4. Rosenbaum P, Paneth N, Leviton A, et al. A report: the defi-

nition and classification of cerebral palsy April 2006. Dev Med

Child Neurol 2007; 49: (Suppl. 109) 8–14.

5. Sanger TD, Delgado MR, Gaebler-Spira D, Hallett M, Mink

JW, Task Force on Childhood Motor Disorders. Classifica-

tion and definition of disorders causing hypertonia in child-

hood. Pediatrics 2003; 111: e89–97.

6. Gainsborough M, Surman G, Maestri G, Colver A, Cans C.

Validity and reliability of the guidelines of the Surveillance of

Cerebral Palsy in Europe for the classification forcerebral

palsy. Dev Med Child Neurol 2008; 50: 828–31.

7. Wynter M, Gibson N, Kentish M, Love S, Thomason P, Gra-

ham HK. Consensus statement on hip surveillance for chil-

dren with cerebral palsy. Australian Standards of Care 2008.

http://www.ausacpdm.org.au/professional/hip-surveillance

(accessed 9 February 2012).

Physical activity of children with cerebral palsy: what are theconsiderations?ROBERT J PALISANODrexel University, Philadelphia, PA, USA.CanChild Centre, McMaster University, Hamilton, ON, Canada.

doi: 10.1111/j.1469-8749.2012.04270.x

This commentary is on the original article by van Wely et al. on pages436–442 of this issue.

Health promotion, physical fitness, and participation indesired community-based recreation and sports programs areincreasingly being recognized as important to quality of lifeand prevention of secondary conditions for individuals withcerebral palsy. The study by van Wely et al.1 is innovative inexamining the effect of personal and environmental factors onphysical activity. In their study, children with cerebral palsywho walk took fewer steps per day on weekends and fewersteps per day than recommendations for children withoutphysical impairments. Ability to walk and participation in clubsports on weekends were two factors that influenced the num-ber of steps taken. Attitudes toward physical activity and per-ceived athletic competence did not predict the number ofsteps taken. The authors suggest that a focus of interventionfor children with bilateral cerebral palsy should be on increas-ing physical activity on weekends and promoting participationin club sports. The findings illustrate that determinants ofphysical activity are multi-factorial and prompted me to reflecton additional considerations for children with cerebral palsy.

(1) Is the child included in decision-making? The child’s inter-ests and the types of activities the family enjoys are usefulstarting points for decision-making. An assumption is thatphysical activities which are enjoyable, can be done with peers,and without the assistance of an adult are more likely to besustained over time and promote lifelong fitness. A key con-cept for enabling children with cerebral palsy to develop andmaintain a healthy lifestyle is self-determination. Self-determi-nation refers to the skills, knowledge, and beliefs that enableindividuals to take charge of and responsibility for their lives.A child who is self-determined is more likely to possess the

internal drive and self-motivation for regular physical activity.Health education, encouraging the child to express prefer-ences, make choices, and take responsibility for physical activ-ity are thought to promote self-determination. For somechildren with cerebral palsy, a focus of intervention might beon real-life experiences that provide opportunities to developsocial and communication skills for engagement in communityactivities and team sports.

(2) What are the options for physical activity? Knowledge of theeffectiveness of specific exercise and physical activity programsfor individuals with cerebral palsy is limited.2 Activity adapta-tion and modification are often required to accommodate achild’s physical restrictions. Many children have a hard timesustaining movement, an important consideration for improv-ing cardio-respiratory fitness. In many communities, availabil-ity and accessibility of programs is limited. A role of the healthcare professional, in collaboration with the child and family, isadvocacy and consultation with instructors and coaches. Con-sumer-friendly information on exercise principles and guide-lines for individuals with cerebral palsy is available on thewebsite of United Cerebral Palsy (http://www.ucp.org).

(3) Is the number of steps walked per day a goal? Although vanWely et al.1 measured steps walked per day as an indicator ofphysical activity, their recommendation to increase physicalactivity on weekends is not specific to walking. A number ofconsiderations underlie the question of whether a child withcerebral palsy should be encouraged to increase physical activ-ity by walking more often or for longer periods. In childrenwith cerebral palsy, walking is characterized by neuromuscularand musculoskeletal impairments such as reduced force-pro-duction, muscle co-activation, and excessive biomechanicalforces though joints, contributing to a high energy cost.3–5 Inmy opinion, this precludes using guidelines for the number ofsteps to walk per day developed for children without physicalimpairments as a standard for children with cerebral palsy,especially where joint protection is a consideration. Low impactor non-impact physical activities such as swimming and cyclingmay be more appropriate and enjoyable for some children.

390 Developmental Medicine & Child Neurology 2012, 54: 388–396