were performed within the subgroup classified in Gross Motor Function Classification System (GMFCS) level V. They proposed that the difference might be explained by variation between the spastic and dyskinetic groups in the localization and extent of cerebral abnormality, but the nature of the difference was not further explored. It would appear likely that variation in patterns of cerebral involvement is associated with differences in the frequency or severity of cognitive impairment, epilepsy, oromotor problems, or risk of severe scoliosis. Further exploration of structure-function relationships in CP is clearly warranted. Epidemiological studies of survival using geographically-defined birth cohorts, including the cohort from western Sweden,1 have not shown improvements in survival by year of birth. More population studies on trends in CP severity are needed so we can identify whether higher proportions of severe motor impairment or comorbidities provide explanation for the lack of improvement in survival. Further research is required to investigate
the effect on quality of life and survival of gastrostomy/ fundoplication, scoliosis surgery, control of epilepsy, and respiratory management in severe CP, research activities that would be facilitated by more universal use of measures of oromotor function and respiratory risk. Unlike research on survival arising from the large service delivery database in California,5 most studies emanating from CP registries are limited by a lack of longitudinal, detailed data on clinical features that are most relevant to risk of early mortality. Specifically, most registries rely on clinical subtype and broad categories of mobility and associated impairments, and do not have detailed longitudinal data on such factors as oromotor function, scoliosis, mode of feeding, nutritional status, control of epilepsy, and respiratory function. Since it is not feasible to obtain these data retrospectively for birth cohorts, more thought is needed on study designs that will provide answers to the question as to whether current practices improve quality of life and survival; at the moment there is little consistent evidence that they do.
REFERENCES 1. Himmelmann K, Sundh V. Survival in cerebral palsy
3. Reid SM, Carlin JB, Reddihough DS. Survival of indi-
during five decades in western Sweden – a population-
viduals with cerebral palsy born in Victoria, Australia,
based study. Dev Med Child Neurol 2015; 57: 762–67.
between 1970 and 2004. Dev Med Child Neurol 2012; 54:
2. Blair E, Watson L, Badawi N, Stanley FJ. Life expectancy among people with cerebral palsy in Western Australia. Dev Med Child Neurol 2001; 43: 508–15.
dren and young people with cerebral palsy. Dev Med Child Neurol 2011; 53: 808–14. 5. Brooks JC, Strauss DJ, Shavelle RM, Tran LM, Rosenbloom L, Wu YW. Recent trends in cerebral
353–60. 4. Westbom L, Bergstrand L, Wagner P, Nordmark E. Survival at 19 years of age in a total population of chil-
palsy survival. Part I: period and cohort effects. Dev Med Child Neurol 2014; 56: 1059–64.
A child with cerebral palsy: what difference does it make for parents? KAREN HORRIDGE Paediatric Disability Department, Sunderland Royal Hospital, Sunderland, UK. doi: 10.1111/dmcn.12721 This commentary is on the original article by Michelsen et al. on pages 768–775 of this issue.
Most practitioners working in the field of childhood disability in the 21st century take a multi-dimensional, holistic view of the health conditions and situations of disabled children and young people, their families and environments, as encouraged by the conceptual framework of the World Health Organisation’s International Classification of Functioning, Disability and Health for Children and Youth (ICF).1 Driven by the discovery each day of new genes and new genotype–phenotype associations, the majority of research presented for publication continues to focus on ‘body structure and function’. It is also important and interesting, but relatively neglected in research, to consider the wider consequences for families of having a disabled child. Michelsen et al.2 are to be congratulated not only for 704 Developmental Medicine & Child Neurology 2015, 57: 698–705
examining the important dimension of parental social consequences of having a child with cerebral palsy (CP), but for doing so based on such a large and well-ascertained population data set. The team in Denmark is uniquely placed to conduct such research, having the advantage of a populationbased register of children born with CP and linked registries covering a range of health, educational, social, and employment information that goes back over many years. Reporting population data from multiple sources is part of life in Denmark – individual consent is not required. Comprehensive ascertainment is thus more likely, giving a realistic picture of the situation within the population. One of the challenges in analysing population data gathered over many years is that earlier cohorts of data predated modern tools for describing aspects of the data. For example, the Gross Motor Function Classification System was validated in 2008,3 yet data in Denmark about children with CP goes back to the birth cohort of 1965, some of whom may well now be older than the authors of the modern tools. Nonetheless, it is possible to shed new light on
old data, by mapping across to the new tools, as Michelson et al. have indeed done. Context is everything. The findings of this study can only be interpreted in the specific context of the socio-economic, legislative, and cultural setting of Denmark. However, important new information is generated about the difference for parents between having a child with CP and a child without CP, information that may be important for future parents and give them hope that their lives may be disrupted less than they might otherwise have been led to believe. Assessing the impact for parents of having a child with CP tests the robustness of the social support infrastructure available within a country and could be a proxy marker of societal attitudes towards disability. Chapeau to Denmark,
which already has a track record for more positively supporting the participation of children and young people with CP in everyday activities and access to services than other European countries.4 The challenge now is for those of us in other countries to collect and report similar data and to expand the range of environmental factors studied, so that we can better identify those factors that are linked to the best outcomes. This will enable us to lobby our governments to make positive environmental changes based on best evidence, so that disabled children and young people can be more fully included in our societies as equal citizens with the least possible negative impact on their families.
REFERENCES 1. World Health Organisation. (2012) International Classification of Functioning, Disability and Health (ICF). World Health Organisation. Available from: http:// www.who. int/classifications/icf/en/ (accessed 14 February 2015). 2. Michelsen SI, Flachs EM, Madsen M, Uldall P.
cerebral palsy in Denmark. Dev Med Child Neurol 2015; 57: 768–75. 3. Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross
4. Fauconnier J, Dickinson HO, Beckung E, et al. Participation in life situations of 8–12 year old children with cerebral palsy: cross sectional European study. BMJ 2009; 338: b1458.
Motor Function Classification System. Dev Med Child Neurol 2008; 50: 744–50.
Parental social consequences of having a child with
Commentaries
705
the effect on quality of life and survival of gastrostomy/ fundoplication, scoliosis surgery, control of epilepsy, and respiratory management in severe CP, research activities that would be facilitated by more universal use of measures of oromotor function and respiratory risk. Unlike research on survival arising from the large service delivery database in California,5 most studies emanating from CP registries are limited by a lack of longitudinal, detailed data on clinical features that are most relevant to risk of early mortality. Specifically, most registries rely on clinical subtype and broad categories of mobility and associated impairments, and do not have detailed longitudinal data on such factors as oromotor function, scoliosis, mode of feeding, nutritional status, control of epilepsy, and respiratory function. Since it is not feasible to obtain these data retrospectively for birth cohorts, more thought is needed on study designs that will provide answers to the question as to whether current practices improve quality of life and survival; at the moment there is little consistent evidence that they do.
REFERENCES 1. Himmelmann K, Sundh V. Survival in cerebral palsy
3. Reid SM, Carlin JB, Reddihough DS. Survival of indi-
during five decades in western Sweden – a population-
viduals with cerebral palsy born in Victoria, Australia,
based study. Dev Med Child Neurol 2015; 57: 762–67.
between 1970 and 2004. Dev Med Child Neurol 2012; 54:
2. Blair E, Watson L, Badawi N, Stanley FJ. Life expectancy among people with cerebral palsy in Western Australia. Dev Med Child Neurol 2001; 43: 508–15.
dren and young people with cerebral palsy. Dev Med Child Neurol 2011; 53: 808–14. 5. Brooks JC, Strauss DJ, Shavelle RM, Tran LM, Rosenbloom L, Wu YW. Recent trends in cerebral
353–60. 4. Westbom L, Bergstrand L, Wagner P, Nordmark E. Survival at 19 years of age in a total population of chil-
palsy survival. Part I: period and cohort effects. Dev Med Child Neurol 2014; 56: 1059–64.
A child with cerebral palsy: what difference does it make for parents? KAREN HORRIDGE Paediatric Disability Department, Sunderland Royal Hospital, Sunderland, UK. doi: 10.1111/dmcn.12721 This commentary is on the original article by Michelsen et al. on pages 768–775 of this issue.
Most practitioners working in the field of childhood disability in the 21st century take a multi-dimensional, holistic view of the health conditions and situations of disabled children and young people, their families and environments, as encouraged by the conceptual framework of the World Health Organisation’s International Classification of Functioning, Disability and Health for Children and Youth (ICF).1 Driven by the discovery each day of new genes and new genotype–phenotype associations, the majority of research presented for publication continues to focus on ‘body structure and function’. It is also important and interesting, but relatively neglected in research, to consider the wider consequences for families of having a disabled child. Michelsen et al.2 are to be congratulated not only for 704 Developmental Medicine & Child Neurology 2015, 57: 698–705
examining the important dimension of parental social consequences of having a child with cerebral palsy (CP), but for doing so based on such a large and well-ascertained population data set. The team in Denmark is uniquely placed to conduct such research, having the advantage of a populationbased register of children born with CP and linked registries covering a range of health, educational, social, and employment information that goes back over many years. Reporting population data from multiple sources is part of life in Denmark – individual consent is not required. Comprehensive ascertainment is thus more likely, giving a realistic picture of the situation within the population. One of the challenges in analysing population data gathered over many years is that earlier cohorts of data predated modern tools for describing aspects of the data. For example, the Gross Motor Function Classification System was validated in 2008,3 yet data in Denmark about children with CP goes back to the birth cohort of 1965, some of whom may well now be older than the authors of the modern tools. Nonetheless, it is possible to shed new light on
old data, by mapping across to the new tools, as Michelson et al. have indeed done. Context is everything. The findings of this study can only be interpreted in the specific context of the socio-economic, legislative, and cultural setting of Denmark. However, important new information is generated about the difference for parents between having a child with CP and a child without CP, information that may be important for future parents and give them hope that their lives may be disrupted less than they might otherwise have been led to believe. Assessing the impact for parents of having a child with CP tests the robustness of the social support infrastructure available within a country and could be a proxy marker of societal attitudes towards disability. Chapeau to Denmark,
which already has a track record for more positively supporting the participation of children and young people with CP in everyday activities and access to services than other European countries.4 The challenge now is for those of us in other countries to collect and report similar data and to expand the range of environmental factors studied, so that we can better identify those factors that are linked to the best outcomes. This will enable us to lobby our governments to make positive environmental changes based on best evidence, so that disabled children and young people can be more fully included in our societies as equal citizens with the least possible negative impact on their families.
REFERENCES 1. World Health Organisation. (2012) International Classification of Functioning, Disability and Health (ICF). World Health Organisation. Available from: http:// www.who. int/classifications/icf/en/ (accessed 14 February 2015). 2. Michelsen SI, Flachs EM, Madsen M, Uldall P.
cerebral palsy in Denmark. Dev Med Child Neurol 2015; 57: 768–75. 3. Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross
4. Fauconnier J, Dickinson HO, Beckung E, et al. Participation in life situations of 8–12 year old children with cerebral palsy: cross sectional European study. BMJ 2009; 338: b1458.
Motor Function Classification System. Dev Med Child Neurol 2008; 50: 744–50.
Parental social consequences of having a child with
Commentaries
705
