Thursday, May 20, 2010
Franklin Hall B Level 4 (Philadelphia Marriott Downtown)
1:00 PM
Background: Parents of children with ASD are implementing biomedical interventions such as special diets and dietary supplements (Millward et al., 2008), despite a lack of robust independent evaluation of these treatments (Green et al., 2006). Parents report they do not receive enough information from child health professionals (Rhoades et al., 2007) and that their decisions are more likely to be influenced by other parents, the media and internet (Mackintosh et al., 2005). One popular biomedical intervention is the gluten free casein free (GFCF) diet (Christison and Ivany., 2006). This exclusion diet is not without risks for the child and family (Arnold et al., 2003). Safe implementation of GFCF diet has significant resource implications for healthcare services (Bower 2002; Keen 2007).
A recent Cochrane review has highlighted the need for rigorous evaluation of GFCF diet; a multi-site randomized controlled trial (RCT) would require the cooperation of both parents and child health professionals.
Objectives: To investigate parents’and child health professionals’ attitudes towards dietary interventions including the GFCF diet. To assess the feasibility of an RCT of this diet in preschool children with autism, and identify potential barriers and facilitators for successful trial completion.
Methods: Following a positive ethical opinion,UK parents of children with ASD and child health professionals were invited to complete a short web-based questionnaire. Recruitment will end January 2010.
Results: (Findings to date) 247 of 361 parents and 248 of 317 professionals (of these 42% were Pediatricians, 35% Child and Adolescent Psychiatrists; and 21% Dietitians and ‘other’ professionals) who expressed an interest have now completed the relevant versions of the questionnaire
Parents:
Just under half of parents (46%) were currently giving their child dietary supplements. 84% were aware of GFCF diet (51% of these had heard about it from other parents). A third were implementing special diets, mainly GFCF diet (81%) and all but 2 of these families were also using dietary supplements. Reported benefits for the child of GFCF diet included gut symptoms (58%), concentration and attention (46%) and communication (31%).
Three quarters of parents said they would ‘definitely’ take part, or would consider participating in an RCT of GFCF diet. Parents commented that they would be more likely to enroll their child knowing they would have access to a study dietitian.
Professionals:
50% of all respondents reported they did not know enough about the efficacy of the GFCF diet to advise families and 72% had been approached by parents for advice about this diet. The majority of professionals (94%) strongly supported the need for evaluation of the GFCF diet and 75% would be prepared to recruit children to a future trial.
Conclusions: These findings confirm the need to evaluate biomedical interventions such as the GFCF diet. Facilitators and barriers towards recruitment and retention of families for a future RCT have been identified. Professionals and parents have shown support through their preparedness to refer, and willingness to participate. This study also provides important insights for the evaluation of complex interventions, including other biomedical, complementary and alternative therapies.
A recent Cochrane review has highlighted the need for rigorous evaluation of GFCF diet; a multi-site randomized controlled trial (RCT) would require the cooperation of both parents and child health professionals.
Objectives: To investigate parents’and child health professionals’ attitudes towards dietary interventions including the GFCF diet. To assess the feasibility of an RCT of this diet in preschool children with autism, and identify potential barriers and facilitators for successful trial completion.
Methods: Following a positive ethical opinion,
Results: (Findings to date) 247 of 361 parents and 248 of 317 professionals (of these 42% were Pediatricians, 35% Child and Adolescent Psychiatrists; and 21% Dietitians and ‘other’ professionals) who expressed an interest have now completed the relevant versions of the questionnaire
Parents:
Just under half of parents (46%) were currently giving their child dietary supplements. 84% were aware of GFCF diet (51% of these had heard about it from other parents). A third were implementing special diets, mainly GFCF diet (81%) and all but 2 of these families were also using dietary supplements. Reported benefits for the child of GFCF diet included gut symptoms (58%), concentration and attention (46%) and communication (31%).
Three quarters of parents said they would ‘definitely’ take part, or would consider participating in an RCT of GFCF diet. Parents commented that they would be more likely to enroll their child knowing they would have access to a study dietitian.
Professionals:
50% of all respondents reported they did not know enough about the efficacy of the GFCF diet to advise families and 72% had been approached by parents for advice about this diet. The majority of professionals (94%) strongly supported the need for evaluation of the GFCF diet and 75% would be prepared to recruit children to a future trial.
Conclusions: These findings confirm the need to evaluate biomedical interventions such as the GFCF diet. Facilitators and barriers towards recruitment and retention of families for a future RCT have been identified. Professionals and parents have shown support through their preparedness to refer, and willingness to participate. This study also provides important insights for the evaluation of complex interventions, including other biomedical, complementary and alternative therapies.