Internet Use in Families With Children Requiring Cardiac Surgery for
                          Congenital Heart Disease
Ca...
Internet Use in Families With Children Requiring Cardiac Surgery for
                          Congenital Heart Disease

 ...
METHODS                                      TABLE 1.        Study Cohort Demographics and Congenital Heart
              ...
Six parents created interactive personal Web sites                      seminating nonpeer reviewed information on the In-...
TABLE 3.       Internet Access and Use According to Cardiac Surgery
                     Cardiac Surgery                  ...
Internet Use in Families With Children Requiring Cardiac Surgery for
                          Congenital Heart Disease
Ca...
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DOI: 10.1542/peds.109.3.419 2002

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  1. 1. Internet Use in Families With Children Requiring Cardiac Surgery for Congenital Heart Disease Catherine M. Ikemba, Claudia A. Kozinetz, Timothy F. Feltes, Charles D. Fraser, Jr, E. Dean McKenzie, Naeema Shah and Antonio R. Mott Pediatrics 2002;109;419-422 DOI: 10.1542/peds.109.3.419 The online version of this article, along with updated information and services, is located on the World Wide Web at: http://www.pediatrics.org/cgi/content/full/109/3/419 PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. PEDIATRICS is owned, published, and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2002 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275. Downloaded from www.pediatrics.org by on July 22, 2010
  2. 2. Internet Use in Families With Children Requiring Cardiac Surgery for Congenital Heart Disease Catherine M. Ikemba, MD*; Claudia A. Kozinetz, PhD, MPH*; Timothy F. Feltes, MD*; Charles D. Fraser, Jr, MD‡; E. Dean McKenzie, MD‡; Naeema Shah, BS‡; and Antonio R. Mott, MD* ABSTRACT. Objective. We sought to document the our patients and their parents, is of paramount impor- prevalence of Internet access and usage patterns among tance. Pediatrics 2002;109:419 – 422; Internet, cardiac sur- families who have children with congenital heart disease gery, congenital heart disease. presenting for cardiac surgery. Design. A cross-sectional study was performed utiliz- T ing a questionnaire (10 questions) as the study tool. Sta- he Internet has become a significant resource tistical analysis was performed on all completed ques- for dissemination of information. The medical tionnaires. The 2 test was used to evaluate categorical field has not been exempt from this medium. variables and the t test to evaluate continuous variables. Since the latter part of the 1990s, a plethora of health Results. Two hundred seventy-five questionnaires and medical information has appeared on the Inter- were completed and analyzed. Thirty-seven percent (102/ net. Many medical personnel and institutions have 275) of the children had a cyanotic congenital heart de- invested significant financial resources into im- fect. There were 21 children with Trisomy 21. Fifty-eight percent (160/275) of families had access to the Internet. proving their Internet capabilities. Educating and in- The most common locations for accessing the Internet forming the populace is 1 of the primary goals of were home (80%; 129/160) and work (51%; 82/160). There incorporating the Internet into the medical field. Un- were no significant differences in Internet access with fortunately, some of the information on the Internet regards to underlying individual congenital heart defect, may not be credible or correct. The lack of peer cyanotic versus acyanotic heart defects, or congenital review and the often anonymous nature of the Inter- heart defects with functional univentricular hearts versus net creates a high risk for propagation of misinfor- biventriuclar hearts. Families with older children (12–24 years) were more likely to have Internet access. Families mation.1–3 of children undergoing placement of a right ventricle to In 1998, Brown et al reported 43% of adult patients pulmonary artery conduit were more likely to have In- had accessed the Internet to obtain health and med- ternet access. ical information within 1 year of their outpatient Of the 160 families with Internet access, 58% (93/160) office visit.4 Kenneth et al reported a 40% increase in used the Internet to obtain information related to their Internet access, from 36% in 1998% to 70% in 1999 child’s cardiac diagnosis. Eighty-two percent (76/93) char- among primary caretakers of children presenting to a acterized locating cardiology-related information as easy. Six parents created interactive personal Web sites specif- large urban pediatric emergency department. In their ically related to their child’s congenital heart defect. Al- study, 31% of the families used the Internet to obtain though families with older patients (12–24 years) were medical information.5 more likely to have access to the Internet, this did not To date, no published study has documented In- translate into greater use of the Internet to obtain cardi- ternet access and usage patterns among parents of ology-related information. Among families who accessed children with congenital heart disease, which affects the Internet for cardiology-related information, 95% (88/ approximately 8/1000 live births in the United States 93) of families characterized the information as helpful or very helpful in furthering the understanding of their annually. Although the majority of these children child’s heart defect. will not require cardiac surgery to correct the con- Conclusion. Families are utilizing the Internet to ed- genital heart defect, there are 10 000 cardiac sur- ucate themselves about congenital heart disease. Most geries performed in neonates, children, and young parents consider the process easy and the information adults each year. obtained helpful to the understanding of their child’s Our Heart Center (pediatric cardiology, congenital congenital heart defect and surgery. Internet use in this heart surgery, and pediatric cardiac anesthesia) pro- patient population is expected to increase. Our vigilance in providing accurate Internet references, as well as in vides medical and surgical care to approximately 650 identifying inaccurate Internet information available to infants, children, and young adults each year who require surgery to palliate or correct congenital heart disease. This population is the product of an exten- From the Department of *Pediatrics and ‡Surgery, Texas Children’s Hos- pital, Baylor College of Medicine, Houston, Texas. sive referral base that is both socioeconomically and Received for publication Jun 11, 2001; accepted Sep 6, 2001. culturally diverse. Reprint requests to (A.R.M.) Lillie Frank Abercrombie Section of Pediatric We sought to document the prevalence of Internet Cardiology, Texas Children’s Hospital, 6621 Fannin, MC19345-C, Houston, TX 77030. E-mail: amott@bcm.tmc.edu access and usage patterns among families who have PEDIATRICS (ISSN 0031 4005). Copyright © 2002 by the American Acad- children with congenital heart disease presenting for emy of Pediatrics. cardiac surgery. PEDIATRICS Vol. 109 No. 3 March 2002 419 Downloaded from www.pediatrics.org by on July 22, 2010
  3. 3. METHODS TABLE 1. Study Cohort Demographics and Congenital Heart Defect (N 275) Over a 6-month study period, a cross-sectional study was per- formed using a questionnaire (10 questions) as the primary study Demographics tool. During the preoperative surgical/medical clinic evaluations, informed consent was obtained and the questionnaire was admin- Patient age 4.3 y istered consecutively to patients in the target population—families (7 d–24 y) of children undergoing elective palliative or definitive cardiac Gender Male Female surgery. An elective procedure was defined as a nonemergent 151 124 cardiac surgery. Families of neonates 7 days of life were ex- Primary language English Spanish cluded from the study. The questionnaires were available in 2 240 35 languages—English and Spanish. Demographic data including Underlying Congenital Heart Defects patient age at surgery, cardiac diagnosis, surgery date, cardiac operation, and associated medical conditions such as genetic syn- VSD 33 dromes, chromosomal abnormalities, or other congenital defects Tetralogy of Fallot and pulmonary atresia/VSD 32 were collected from our cardiology patient database. The protocol ASD (secundum) 22 was approved by the Texas Children’s Hospital Affiliates Review Heterotaxy 19 Board for Human Subject Research and the Baylor College of Complete atrioventricular canal defect 19 Medicine Institutional Review Board. Hypoplastic left heart syndrome 19 Statistical analysis was performed on all completed question- Coarctation of the aorta 14 naires. The 2 test was used to evaluate categorical variables and D- Transposition of the great arteries 11 the t test to evaluate continuous variables. Statistical significance Double outlet right ventricle 11 was defined as P .05. The SAS software package (SAS Institute Tricuspid valve atresia 8 Inc, Cary, NC) was used to conduct the analysis. ASD/VSD 8 ASD (sinus venosus) 8 Pulmonary valve stenosis 8 RESULTS Pulmonary atresia/intact ventricular septum 7 Between March 2000 and August 2000, 275 ques- L-TGA/ventricular inversion 7 tionnaires were completed and analyzed. One family Aortic valve stenosis 7 Total anomalous pulmonary venous return 6 declined participation in the study. The study group Truncus arteriosus 5 represents 80% of the cardiac surgeries performed Interrupted aortic arch 5 during the study period and is representative of the Discrete subaortic stenosis 4 usual surgery population. The cohort demographic Patent ductus arteriosus 4 data and a list of underlying congenital heart defects Ebsteins anomaly of the tricuspid valve 3 Vascular ring 3 are listed (Table 1). Double inlet left ventricle 3 There were 33 children with the following associ- ASD (primum) 2 ated medical conditions: Trisomy 21 (N 21), Holt- ALCAPA 1 Oram syndrome (N 3), isolated cleft palate (N 2), Other 6 partial chromosomal deletion (N 2), choanal ste- VSD indicates ventricular septal defect; ASD, atrial septal defect; nosis (N 1), Turner syndrome (N 1), velo-cardio- L-TGA, L-transposition of the great arteries; ALCAPA, anomalous facial syndrome (N 1), VACTERL association (N left coronary artery from the pulmonary artery. 1), and Ellis-van Creveld syndrome (N 1). cardiac operations performed (Table 3). The families Internet Access of children undergoing placement of a right ventricle Fifty-eight percent (160/275) of families had access to pulmonary artery conduit had a statistically sig- to the Internet. Among parents with access, English nificant increase in Internet access (P .02). Cardiac was the primary language in 99% (158/160) com- operations were grouped based on palliative versus pared with Spanish as the primary language in 1% definitive repair and simple operations (closure of an (2/160) of families (P .001), which represents 6% of atrial septal or ventricular septal defect, ligation of a the study cohort in which Spanish was the primary patent ductus arteriosus, placement of a Blalock- language. The most common locations for accessing Taussig shunt, or repair of coarctation of the aorta) the Internet were home in 80% (129/160) of respon- versus complex operations. No statistically signifi- dents and work in 51% (82/160) of respondents. cant differences were found. Many parents reported 1 location for accessing the Internet. Other locations included school (N 22) or Internet Use a neighbor’s house (N 17). Of the 160 families with Internet access, 58% (93/ Families with older children (12–24 years) were 160) used the Internet to obtain information related more likely to have Internet access when compared to their child’s cardiac diagnosis. Eighty-two percent with children younger than 12 years old (P .001). (76/93) characterized locating cardiology-related in- Internet access was analyzed based on the underly- formation as easy and 18% (17/93) as difficult. Fam- ing congenital heart defect, and there were no statis- ilies spent an average of 3.2 hours/week “surfing” tically significant differences in Internet access based the Internet for cardiology-related information. Sev- on diagnosis other than heterotaxy syndrome (P enty-four percent (69/93) of families used the Inter- .02). The children were grouped based on broad net for educational purposes before their child’s di- diagnostic categories— cyanotic heart defects versus agnosis of congenital heart disease. acyanotic heart defects and functional univentricular Among families who reported using the Internet to versus biventricular hearts. No statistically signifi- obtain cardiology information related to their child’s cant differences were found. congenital heart defect, 53% (50/93) of families could Internet access was analyzed for the most common name a favorite cardiology Web site on the survey. 420 INTERNET USE IN CHILDREN HAVING CARDIAC SURGERY Downloaded from www.pediatrics.org by on July 22, 2010
  4. 4. Six parents created interactive personal Web sites seminating nonpeer reviewed information on the In- specifically related to their child’s congenital heart ternet.1–3,6,7 In 1998, McClung et al6 investigated the defect. quality of information a lay person could obtain from Older patients (12–24 years) were more likely to the Internet regarding treatment of childhood diar- have Internet access when compared with younger rhea, presumably a straightforward, common medi- children (P .001). However, the difference in Inter- cal problem. Only 20% of Web sites from “traditional net usage between the age groups did not achieve medical sources” concurred with American Acad- statistical significance. emy of Pediatrics guidelines regarding treatment of Internet use for cardiology-related information childhood diarrhea. was analyzed based on the child’s underlying con- In response to the problem of outdated, misleading, genital heart defect. No significant differences were incorrect information on the Internet, the American found (Table 2). The children were grouped into College of Cardiology (www.acc.org) has made a com- broader diagnostic categories— cyanotic heart defect mitment to become the leading electronic source of versus acyanotic heart defects and functional univen- guidelines and standards in the field of cardiology.7 tricular hearts versus biventricular hearts. No statis- The American Heart Association (www.american- tically significant differences were found. heart.org) also has extensive information available on For the most common cardiac operations per- their Web site regarding acquired heart disease and formed, Internet use was analyzed and no statisti- congenital heart disease. The American Academy of cally significant differences were found (Table 3), nor Pediatrics (www.aap.org) has an updated review of was there a difference when operations were pediatric cardiology-related Web sites. grouped into broader categories—palliative versus We sought to document Internet usage trends in definitive operations and simple versus complex op- parents of children undergoing cardiac surgery for erations. congenital heart disease. Given the complex, inva- sive nature of cardiac surgical intervention, we hy- Internet Information Utility pothesized that parents of an asymptomatic or min- Among families who accessed the Internet for car- imally symptomatic child are far more skeptical of diology-related information, 66% (61/93) of families the need for cardiac surgery to improve their child’s characterized the information as very helpful in fur- health than are the parents of a child who is obvi- thering the understanding of their child’s heart de- ously symptomatic and/or cyanotic. The need for fect. Twenty-nine percent (27/93) characterized the cardiac surgery in the absence of signs or symptoms, information as helpful and 5% (5/93) as not being we thought, would be an impetus for parents to use helpful. the Internet to educate themselves about their child’s heart defect, its implications, and the different forms Children With an Associated Medical Condition of medical treatment. Internet Access and Usage Trends In our study, 34% of the families used the Internet There were 33 children with associated medical to obtain information related to their child’s heart conditions. Internet access was similar for these chil- disease. Previously documented medical Internet use dren when compared with children with isolated among adult and general pediatric populations were congenital heart defects, 58% (19/33) and 58% (141/ similar, 42% and 31%, respectively.4,5 Neither a 242), respectively. The difference in Internet usage child’s congenital heart defect nor complexity of sur- between the groups did not achieve statistical signif- gery impacted the family’s use of the Internet to icance. obtain cardiology-related information. The majority of our families perceived the information on the In- DISCUSSION ternet as helpful with regards to understanding their “Direct electronic publishing of scientific studies child’s congenital heart disease and upcoming sur- threatens to undermine time-tested traditions that gery. This study did not address the content, accu- help to ensure the quality of medical literature.”1 racy, or credibility of information available on the Recent publications warn of the consequences of dis- Internet. TABLE 2. Internet Access and Use According to Cardiac Defect Cardiac Defect Internet Access Internet Use CHD Cohort P Value CHD Cohort P Value VSD (n 33) 71% 56% NS 46% 60% NS ASD (secundum, primum, venosus) (n 32) 56% 58% NS 72% 56% NS TOF (n 32) 66% 57% NS 67% 57% NS CAVC (n 19) 61% 58% NS 55% 58% NS Heterotaxy (n 19) 32% 60% .02 67% 58% NS HLHS (n 19) 63% 58% NS 58% 58% NS CoA (n 14) 57% 58% NS 38% 59% NS TGA (n 11) 55% 58% NS 83% 57% NS DORV (n 11) 40% 59% NS 50% 58% NS CHD indicates congentital heart defect; NS, not significant; ASD, atrial septal defect; CoA, coarctation of the aorta; CAVC, complete atrioventricular canal defect; DORV, double outlet right ventricle; HLHS, hypoplastic left heart syndrome; TOF, tetralology of Fallot; TGA, transposition of the great arteries; VSD, ventricular septal defect. ARTICLES 421 Downloaded from www.pediatrics.org by on July 22, 2010
  5. 5. TABLE 3. Internet Access and Use According to Cardiac Surgery Cardiac Surgery Internet Access Internet Use Surgery Cohort P Value Surgery Cohort P Value VSD repair (n 36) 69% 56% NS 44% 61% NS ASD repair (secundum, primum, venosus) (n 32) 56% 58% NS 72% 56% NS Glenn shunt (n 26) 42% 60% NS 73% 57% NS CAVC (n 18) 61% 58% NS 55% 58% NS TOF repair (n 18) 67% 58% NS 58% 58% NS Fontan operation (n 15) 47% 59% NS 57% 58% NS RV-PA conduit (n 15) 87% 57% .02 69% 57% NS Aorto-pulmonary shunt (n 14) 57% 58% NS 50% 59% NS CoA (n 14) 57% 58% NS 38% 59% NS Norwood operation (n 10) 60% 58% NS 33% 59% NS NS indicates not significant; ASD, atrial septal defect; CAVC, complete atrioventricular canal repair, CoA, coarctation of the aorta; RV-PA, right ventricle to pulmonary artery conduit; TOF, tetralogy of Fallot; VSD, ventricular septal defect. Parents who identified Spanish as their primary be an equally effective educational tool in the field of language had decreased access to the Internet (P medicine. Our study confirms that families are using .001). Previous studies have shown that socioeco- the Internet to educate themselves about congenital nomic status and parental educational level are re- heart disease. Most parents consider the process easy lated to Internet access rather than ethnicity or pri- and the information obtained helpful to the under- mary language.5 In our cohort, bilingual families standing of their child’s congenital heart defect and may have chosen an English questionnaire, there- surgery. Internet use in this patient population is fore, the decrease in Internet access among families expected to increase. Our vigilance in providing ac- with Spanish as their primary language may reflect curate Internet references, as well as in identifying educational level rather than ethnicity. inaccurate Internet information available to our pa- There was decreased Internet access in families of tients and their parents, is of paramount importance. children with heterotaxy syndrome (P .02). They represent a small subset of the study cohort. Al- though there was a statistically significant difference, REFERENCES the clinical implications of this finding have yet to be 1. Kassirer JP, Angell M. The Internet and the journal. N Engl J Med. determined and can only be speculative. 1995;332:709 –1710 Among the subset of families with associated med- 2. Abdulla R. Pediatric cardiology and the electronic literature. Pediatr ical conditions and congenital heart disease, there Cardiol. 1997;18:321–322 3. Elliott SJ, Elliott RG. Internet list servers and pediatrics: newly emerging may be increased Internet usage, however, attribut- legal and clinical practice issues. Pediatrics. 1996;97:399 – 400 able to the small sample size, we were unable to 4. Brown MS. What’s up on the Internet: physician Internet use growing show statistical significance. Some subgroup analy- rapidly. Med Pract Commun. 1998;5:7 ses were based on small numbers with low power 5. Kenneth MD, Feit S, Pena BM, Kohane IS. Growth and determinants of associated with those comparisons. We acknowledge access in patient E-mail and Internet use. Arch Pediatr Adolesc Med. 2000;154:508 –511 this as a limitation of the study. 6. McClung HJ, Murray RD, Heitlinger LA. The Internet as a source for current patient information. Pediatrics. 1998;101(6). Available at: http:// CONCLUSION www.pediatrics.org/cgi/content/full/101/6/e2 The Internet is a significant medium with which to 7. Garson A. President’s page: integrating the Internet into your practice. disseminate information; and if used correctly, can J Am Coll Cardiol. 1999;34:2139 –2140 LAUDABLE CAUTION “Like any other therapeutic measure, hypothermia must be administered with understanding of the extensive physiological effects.” Thoresen M. Cooling in the newborn after asphyxia—physiological and experimental background and its clinical use. Semin Neonatol. 2000;5:61–73 Submitted by Student 422 INTERNET USE IN CHILDREN HAVING CARDIAC SURGERY Downloaded from www.pediatrics.org by on July 22, 2010
  6. 6. Internet Use in Families With Children Requiring Cardiac Surgery for Congenital Heart Disease Catherine M. Ikemba, Claudia A. Kozinetz, Timothy F. Feltes, Charles D. Fraser, Jr, E. Dean McKenzie, Naeema Shah and Antonio R. Mott Pediatrics 2002;109;419-422 DOI: 10.1542/peds.109.3.419 Updated Information including high-resolution figures, can be found at: & Services http://www.pediatrics.org/cgi/content/full/109/3/419 Citations This article has been cited by 11 HighWire-hosted articles: http://www.pediatrics.org/cgi/content/full/109/3/419#otherarticle s Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Computers http://www.pediatrics.org/cgi/collection/computers Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.pediatrics.org/misc/Permissions.shtml Reprints Information about ordering reprints can be found online: http://www.pediatrics.org/misc/reprints.shtml Downloaded from www.pediatrics.org by on July 22, 2010

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