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Assessment of families of children with cerebral palsy of the “CP-graph on treatment modalities for gross motor function”
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 1 6 ( 2 0 1 2 ) 7 6 2 e7 6 3
Official Journal of the European Paediatric Neurology Society
Letter to the Editor
Assessment of families of children with cerebral palsy of the “CP-graph on treatment modalities for gross motor function” The updated European Consensus 2009 on the use of Botulinum toxin (BoNT) for children with cerebral palsy (CP) described the toxin’s role in a multimodal therapeutic approach aiming at improving functionality and capabilities.1 It included a graphic representation of treatments in paediatric CP, according to age and GMFCS level, designed by Florian Heinen, Munich, Germany, with reference to therapeutic principle, indications and limitations of functional therapies, orthoses, oral medications, BoNT, Intrathecal Baclofen and Orthopaedic Surgery. Families and patients with CP report concerns on standards of news breaking, early follow-up, information, current and future services, planning for the future,2e4 the need for caring and supportive people, fighting the fatigue, communication/information and disability awareness.5 This communication describes the assessment of families to the Greek translation of the “CP-graph”. This was given to 60 families that were later invited to answer 23 structured questions on CP and the utility of the graph, with the opportunity to freely comment on each. Fiftytwo families (responder rate 86.7%) accepted; parents’ mean age was 40.6 years (SD: 7.1), 46 were of Greek nationality, all were married, 19 had university degrees, 25 had finished highschool. Patients’ mean age was 7.7 years (SD: 4.9, range: 1.7e21.3 years). Mean age at diagnosis was 0.7 years (SD ¼ 0.7, range: 0.33e4 years). GMFCS levels were: I: 12, II: 11, III: 10, IV: 8, V: 11. All had functional therapies, 75% technical devices and BoNT injections, 25% orthopaedic surgery. Parents’ information on CP came mostly from child neurologists and therapists. Many felt well informed on issues such as CP aetiology (60%), suitable treatments (86%), course and prognosis of CP (58%); they understood well what gross motor function meant (61.55%), what the child’s functional level was (85%) and what CP meant for the patient’s future (88.5%). Opinion on the CP-graph: 75% of parents found it very understandable, very helpful in understanding the functional level of their child (73%) and the relationship between gross motor function and therapeutic approach (69%). The information was very clear on functional therapies (61%), technical support (56%), oral medications (52%), BoNT (58%), ITB (54%) and orthopaedic surgery (58%); 77% thought it helpful in making the right decisions in order to achieve maximal function; 83%, helpful in communicating with physicians better. Most (90.4%) believed that the organized, visual
representation of the information helped their understanding. There were no correlations between parental characteristics and opinions on the graph. Overall, the graph was helpful, understandable and explanatory to most parents, with the potential to assist in communicating with the treatment team and in decision making. We believe that this visualized tool can serve as a guide when discussing treatment and prognosis of CP, taking into consideration the child’s and family’s needs and existing institutional capabilities. We encourage our colleagues to discuss the care plan with the help of the graph in order to ensure communication and identify priorities; when families feel that priorities differ, the parent-health professional relationship is negatively affected.6 The graph facilitates coordination of care between the hospital team and professionals that deliver it. Parents identified gaps in inter-professional communication between hospitals and primary care settings7; these were recognized by professionals and attributed to organizational factors. Families may not be aware of advances in care and may hesitate to try new treatments; studies show that patients whose families are well informed and willing to accept supplemental care, fare better.8 The visual representation of the “developmental” curves based on GMFCS levels and the available treatments provide the opportunity to discuss that a child in GMFCS level IV cannot miraculously “jump” to level II, something hard to accept emotionally, but helpful in avoiding excessive expectations or therapies not based on scientific evidence. Tapering of walking interventions contributes to feelings of guilt and doubt.9 We have to assist families to prepare for key periods in the children’s lives4; the graph holds tremendous potential towards this goal. In times of iPhones, iPads and iBooks the neuropaediatric community should be the driver for the development of digital educational parenting materials, visualization, support in intuitive understanding and an active dialog about treatment goals. The CP-Graph based on GMFCS is one remarkable step towards the right direction.
references
1. Heinen F, Desloovere K, Schroeder AS, Berweck S, Borggraefe I, van Campenhout A, et al. The updated European consensus
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 1 6 ( 2 0 1 2 ) 7 6 2 e7 6 3
2. 3. 4.
5.
6.
7.
8.
2009 on the use of botulinum toxin for children with cerebral palsy. Eur J Paediatr Neurol 2010;14:45e66. Milner J, Bungay C, Jellinek D, Hall DM. Needs of disabled children and their families. Arch Dis Child 1996;75:399e404. Buran CF, Sawin K, Grayson P, Criss S. Family needs assessment in cerebral palsy clinic. J Spec Pediatr Nurs 2009;14:86e93. Palisano RJ, Almarsi N, Chiarello LA, Orlin MN, Bagley A, Maggs J. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev 2010;36:85e92. Darrah J, Magil-Evans J, Adkins R. Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disabil Rehabil 2002;24:542e9. Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev 2011. doi:10.1111/j. 1365-2214.2011.01240.x. Gulmans J, Vollenbroek-Hutten MM, Van Gemert-Pijnen JE, Van Harten WH. Evaluating patient care communication in integrated care settings: application of a mixed method approach in cerebral palsy programs. Int J Qual Health Care 2009;21:58e65. Balkrishnan R, Naughton M, Smith BP, Manuel J, Koman LA. Parent caregiver-related predictors of health care service
763
utilization by children with cerebral palsy enrolled in Medicaid. J Pediatr Health Care 2002;16:73e8. 9. Gibson BE, Teachman G, Wright V, Fehlings D, Young NL, McKeever P. Children’s and parents’ beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy. Child Care Health Dev 2011. doi:10.1111/j.13652214.2011.01271.x.
Antigone S. Papavasiliou*, John Ioannou, Marina Gavatha, Irene Nikaina, Ioanna Rizou Pendeli Children’s Hospital, Athens 15236, Greece *Corresponding author. E-mail address: [email protected] (A.S. Papavasiliou). 19 February 2012 1090-3798/$ e see front matter ª 2012 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.ejpn.2012.02.012
Official Journal of the European Paediatric Neurology Society
Letter to the Editor
Assessment of families of children with cerebral palsy of the “CP-graph on treatment modalities for gross motor function” The updated European Consensus 2009 on the use of Botulinum toxin (BoNT) for children with cerebral palsy (CP) described the toxin’s role in a multimodal therapeutic approach aiming at improving functionality and capabilities.1 It included a graphic representation of treatments in paediatric CP, according to age and GMFCS level, designed by Florian Heinen, Munich, Germany, with reference to therapeutic principle, indications and limitations of functional therapies, orthoses, oral medications, BoNT, Intrathecal Baclofen and Orthopaedic Surgery. Families and patients with CP report concerns on standards of news breaking, early follow-up, information, current and future services, planning for the future,2e4 the need for caring and supportive people, fighting the fatigue, communication/information and disability awareness.5 This communication describes the assessment of families to the Greek translation of the “CP-graph”. This was given to 60 families that were later invited to answer 23 structured questions on CP and the utility of the graph, with the opportunity to freely comment on each. Fiftytwo families (responder rate 86.7%) accepted; parents’ mean age was 40.6 years (SD: 7.1), 46 were of Greek nationality, all were married, 19 had university degrees, 25 had finished highschool. Patients’ mean age was 7.7 years (SD: 4.9, range: 1.7e21.3 years). Mean age at diagnosis was 0.7 years (SD ¼ 0.7, range: 0.33e4 years). GMFCS levels were: I: 12, II: 11, III: 10, IV: 8, V: 11. All had functional therapies, 75% technical devices and BoNT injections, 25% orthopaedic surgery. Parents’ information on CP came mostly from child neurologists and therapists. Many felt well informed on issues such as CP aetiology (60%), suitable treatments (86%), course and prognosis of CP (58%); they understood well what gross motor function meant (61.55%), what the child’s functional level was (85%) and what CP meant for the patient’s future (88.5%). Opinion on the CP-graph: 75% of parents found it very understandable, very helpful in understanding the functional level of their child (73%) and the relationship between gross motor function and therapeutic approach (69%). The information was very clear on functional therapies (61%), technical support (56%), oral medications (52%), BoNT (58%), ITB (54%) and orthopaedic surgery (58%); 77% thought it helpful in making the right decisions in order to achieve maximal function; 83%, helpful in communicating with physicians better. Most (90.4%) believed that the organized, visual
representation of the information helped their understanding. There were no correlations between parental characteristics and opinions on the graph. Overall, the graph was helpful, understandable and explanatory to most parents, with the potential to assist in communicating with the treatment team and in decision making. We believe that this visualized tool can serve as a guide when discussing treatment and prognosis of CP, taking into consideration the child’s and family’s needs and existing institutional capabilities. We encourage our colleagues to discuss the care plan with the help of the graph in order to ensure communication and identify priorities; when families feel that priorities differ, the parent-health professional relationship is negatively affected.6 The graph facilitates coordination of care between the hospital team and professionals that deliver it. Parents identified gaps in inter-professional communication between hospitals and primary care settings7; these were recognized by professionals and attributed to organizational factors. Families may not be aware of advances in care and may hesitate to try new treatments; studies show that patients whose families are well informed and willing to accept supplemental care, fare better.8 The visual representation of the “developmental” curves based on GMFCS levels and the available treatments provide the opportunity to discuss that a child in GMFCS level IV cannot miraculously “jump” to level II, something hard to accept emotionally, but helpful in avoiding excessive expectations or therapies not based on scientific evidence. Tapering of walking interventions contributes to feelings of guilt and doubt.9 We have to assist families to prepare for key periods in the children’s lives4; the graph holds tremendous potential towards this goal. In times of iPhones, iPads and iBooks the neuropaediatric community should be the driver for the development of digital educational parenting materials, visualization, support in intuitive understanding and an active dialog about treatment goals. The CP-Graph based on GMFCS is one remarkable step towards the right direction.
references
1. Heinen F, Desloovere K, Schroeder AS, Berweck S, Borggraefe I, van Campenhout A, et al. The updated European consensus
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 1 6 ( 2 0 1 2 ) 7 6 2 e7 6 3
2. 3. 4.
5.
6.
7.
8.
2009 on the use of botulinum toxin for children with cerebral palsy. Eur J Paediatr Neurol 2010;14:45e66. Milner J, Bungay C, Jellinek D, Hall DM. Needs of disabled children and their families. Arch Dis Child 1996;75:399e404. Buran CF, Sawin K, Grayson P, Criss S. Family needs assessment in cerebral palsy clinic. J Spec Pediatr Nurs 2009;14:86e93. Palisano RJ, Almarsi N, Chiarello LA, Orlin MN, Bagley A, Maggs J. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev 2010;36:85e92. Darrah J, Magil-Evans J, Adkins R. Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disabil Rehabil 2002;24:542e9. Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev 2011. doi:10.1111/j. 1365-2214.2011.01240.x. Gulmans J, Vollenbroek-Hutten MM, Van Gemert-Pijnen JE, Van Harten WH. Evaluating patient care communication in integrated care settings: application of a mixed method approach in cerebral palsy programs. Int J Qual Health Care 2009;21:58e65. Balkrishnan R, Naughton M, Smith BP, Manuel J, Koman LA. Parent caregiver-related predictors of health care service
763
utilization by children with cerebral palsy enrolled in Medicaid. J Pediatr Health Care 2002;16:73e8. 9. Gibson BE, Teachman G, Wright V, Fehlings D, Young NL, McKeever P. Children’s and parents’ beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy. Child Care Health Dev 2011. doi:10.1111/j.13652214.2011.01271.x.
Antigone S. Papavasiliou*, John Ioannou, Marina Gavatha, Irene Nikaina, Ioanna Rizou Pendeli Children’s Hospital, Athens 15236, Greece *Corresponding author. E-mail address: [email protected] (A.S. Papavasiliou). 19 February 2012 1090-3798/$ e see front matter ª 2012 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.ejpn.2012.02.012