Objective. Personal health records (PHRs) may address the needs of children with attention deficit hyperactivity disorder. Among parents, we assessed acceptance, barriers, and intentions regarding use of PHR for their children with attention deficit hyperactivity disorder. Methods. Survey of parents from 3 practices in Rochester, NY. Stepwise logistic regression analysis explored factors predicting respondents’ intentions for future use of PHR, accounting for care coordination needs, caregiver education, socioeconomic status, and satisfaction with providers. Results. Of 184 respondents, 23% had used the PHR for their child, 82% intended future use. No difference was observed between users and nonusers regarding gender, age, race, or education. Users were more likely than nonusers to reside in the suburbs (P = .03). Caregivers were more likely to plan future use of the PHR if they felt engaged as partners in their child’s care (adjusted odds ratio = 2.3, 95% confidence interval = 1.2, 4.5). Conclusions. Parents are enthusiastic about PHRs. Future work should focus on engaging them as members of the health care team.
Centers for Disease Control and Prevention. Increasing prevalence of parent-reported attention-deficit/hyperactivity disorder among children—United States, 2003 and 2007. MMWR Morb Mortal Wkly Rep. 2010;59:1439-1443.
2.
LarsonKRussSAKahnRSHalfonN. Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007. Pediatrics. 2011;127:462-470.
3.
Subcommittee on Attention-Deficit/Hyperactivity Disorder; Steering Committee on Quality Improvement and Management. ADHD: clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics. 2011;128:1007-1022.
4.
DanckaertsMSonuga-BarkeEJBanaschewskiT. The quality of life of children with attention deficit/hyperactivity disorder: a systematic review. Eur Child Adolesc Psychiatry. 2010;19:83-105.
5.
LeeSSHinshawSP. Predictors of adolescent functioning in girls with attention deficit hyperactivity disorder (ADHD): the role of childhood ADHD, conduct problems, and peer status. J Clin Child Adolesc Psychol. 2006;35:356-368.
6.
ShilonYPollakYAranAShakedSGross-TsurV. Accidental injuries are more common in children with attention deficit hyperactivity disorder compared with their non-affected siblings. Child Care Health Dev. 2012;38:366-370.
7.
WuSYGauSS. Correlates for academic performance and school functioning among youths with and without persistent attention-deficit/hyperactivity disorder. Res Dev Disabil. 2013;34:505-515.
8.
BirnbaumHGKesslerRCLoweSW. Costs of attention deficit-hyperactivity disorder (ADHD) in the US: excess costs of persons with ADHD and their family members in 2000. Curr Med Res Opin. 2005;21:195-206.
9.
CussenASciberrasEUkoumunneOCEfronD. Relationship between symptoms of attention-deficit/hyperactivity disorder and family functioning: a community-based study. Eur J Pediatr. 2012;171:271-280.
10.
De RidderADe GraeveD. Healthcare use, social burden and costs of children with and without ADHD in Flanders, Belgium. Clin Drug Investig. 2006;26:75-90.
11.
GaleraCBouvardMPLagardeE. Childhood attention problems and socioeconomic status in adulthood: 18-year follow-up. Br J Psychiatry. 2012;201:20-25.
12.
HodgkinsPMontejanoLSasaneRHuseD. Cost of illness and comorbidities in adults diagnosed with attention-deficit/hyperactivity disorder: a retrospective analysis. Prim Care Companion CNS Disord. 2011;13(2). doi:10.4088/PCC.10m01030.
13.
MeyersJClassiPWietechaLCandrilliS. Economic burden and comorbidities of attention-deficit/hyperactivity disorder among pediatric patients hospitalized in the United States. Child Adolesc Psychiatry Ment Health. 2010;4:31.
14.
PelhamWEFosterEMRobbJA. The economic impact of attention-deficit/hyperactivity disorder in children and adolescents. J Pediatr Psychol. 2007;32:711-727.
15.
SwensenARBirnbaumHGSecnikKMarynchenkoMGreenbergPClaxtonA. Attention-deficit/hyperactivity disorder: increased costs for patients and their families. J Am Acad Child Adolesc Psychiatry. 2003;42:1415-1423.
16.
GuevaraJPFeudtnerCRomerD. Fragmented care for inner-city minority children with attention-deficit/hyperactivity disorder. Pediatrics. 2005;116:e512-e517.
17.
ToomeySLChanERatnerJASchusterMA. The patient-centered medical home, practice patterns, and functional outcomes for children with attention deficit/hyperactivity disorder. Acad Pediatr. 2011;11:500-507.
18.
ToomeySLFinkelsteinJKuhlthauK. Does connection to primary care matter for children with attention-deficit/hyperactivity disorder?Pediatrics. 2008;122:368-374.
19.
KnappCAHinojosaMBaron-LeeJFernandez-BacaDHinojosaRThompsonL. Factors associated with a medical home among children with attention-deficit hyperactivity disorder. Matern Child Health J. 2012;16:1771-1778.
20.
OlsonBGRosenbaumPFDosaNPRoizenNJ. Improving guideline adherence for the diagnosis of ADHD in an ambulatory pediatric setting. Ambul Pediatr. 2005;5:138-142.
21.
CoJPTJohnsonSAPoonEG. Electronic health record decision support and quality of care for children with ADHD. Pediatrics. 2010;126:239-246.
22.
BonanderJGatesS. Public health in an era of personal health records: opportunities for innovation and new partnerships. J Med Internet Res. 2010;12(3):e33.
23.
BrittoMTWimbergJ. Pediatric personal health records: current trends and key challenges. Pediatrics. 2009;123(suppl 2):S97-S99.
24.
TomJOMangione-SmithRSolomonCGrossmanDC. Integrated personal health record use: association with parent-reported care experiences. Pediatrics. 2012;130:e183-e190.
25.
WeitzmanERKaciLMandlKD. Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J Med Internet Res. 2009;11(2):e14.
26.
AnckerJSBarronYRockoffML. Use of an electronic patient portal among disadvantaged populations. J Gen Intern Med. 2011;26:1117-1123.
27.
Centers for Disease Control and Prevention. National Survey of Children’s Health. http://www.cdc.gov/nchs/slaits/nsch.htm. Published 2012. Accessed December 21, 2014.
28.
Centers for Disease Control and Prevention. National Survey of Children with Special Health Care Needs. http://www.cdc.gov/nchs/slaits/cshcn.htm. Accessed December 21, 2014.
29.
Agency for Healthcare Research and Quality. Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey. http://cahps.ahrq.gov. Accessed December 21, 2014.
30.
AgrawalRShahPZebrackiKSanabriaKKohrmanCKohrmanAF. Barriers to care for children and youth with special health care needs: perceptions of Illinois pediatricians. Clin Pediatr. 2012;51:39-45.
31.
HarrisPATaylorRThielkeRPayneJGonzalezNCondeJG. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377-381.
32.
DavisFDBagozziRPWarshawPR. User acceptance of computer technology: a comparison of two theoretical models. Manage Sci. 1989;35:982-1003.
33.
KaelberDCJhaAKJohnstonDMiddletonBBatesDW. A research agenda for personal health records (PHRs). J Am Med Inform Assoc. 2008;15:729-736.
34.
FinkelsteinFKnightAMarinopoulosEnabling Patient-Centered Care Through Health Information Technology (Evidence Reports/Technology Assessments, No. 206). Rockville, MD: Agency for Healthcare Research and Quality; 2012. http://www.ncbi.nlm.nih.gov/books/NBK99854/. Accessed December 21, 2014.
35.
VisserSNDanielsonMLBitskoRH. Trends in the parent-report of health care provider-diagnosed and medicated attention-deficit/hyperactivity disorder: United States, 2003-2011. J Am Acad Child Adolesc Psychiatry. 2014;53:34-46.e32.
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