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 prevalence of Internet access and usage patterns among families who have children with congenital heart disease presenting for cardiac surgery.
Design. A cross-sectional study was performed utiliz-ing a questionnaire (10 questions) as the study tool. Sta-tistical analysis was performed on all completed ques-tionnaires. The 2 test was used to evaluate categorical
variables and thettest to evaluate continuous variables.
Results. Two hundred seventy-five questionnaires were completed and analyzed. Thirty-seven percent (102/ 275) of the children had a cyanotic congenital heart de-fect. There were 21 children with Trisomy 21. Fifty-eight percent (160/275) of families had access to the Internet. The most common locations for accessing the Internet were home (80%; 129/160) and work (51%; 82/160). There were no significant differences in Internet access with regards to underlying individual congenital heart defect, cyanotic versus acyanotic heart defects, or congenital heart defects with functional univentricular hearts versus biventriuclar hearts. Families with older children (12–24 years) were more likely to have Internet access. Families of children undergoing placement of a right ventricle to pulmonary artery conduit were more likely to have In-ternet access.
Of the 160 families with Internet access, 58% (93/160) used the Internet to obtain information related to their child’s cardiac diagnosis. Eighty-two percent (76/93) char-acterized locating cardiology-related information as easy. Six parents created interactive personal Web sites specif-ically related to their child’s congenital heart defect. Al-though families with older patients (12–24 years) were more likely to have access to the Internet, this did not translate into greater use of the Internet to obtain cardi-ology-related information. Among families who accessed the Internet for cardiology-related information, 95% (88/ 93) of families characterized the information as helpful or very helpful in furthering the understanding of their child’s heart defect.
Conclusion. Families are utilizing the Internet to ed-ucate themselves about congenital heart disease. Most parents consider the process easy and the information obtained helpful to the understanding of their child’s congenital heart defect and surgery. Internet use in this patient population is expected to increase. Our vigilance in providing accurate Internet references, as well as in identifying inaccurate Internet information available to
our patients and their parents, is of paramount impor-tance.Pediatrics 2002;109:419 – 422;Internet, cardiac sur-gery, congenital heart disease.
T
he Internet has become a significant resource for dissemination of information. The medical field has not been exempt from this medium. Since the latter part of the 1990s, a plethora of health and medical information has appeared on the Inter-net. Many medical personnel and institutions have invested significant financial resources into im-proving their Internet capabilities. Educating and in-forming the populace is 1 of the primary goals of incorporating the Internet into the medical field. Un-fortunately, some of the information on the Internet may not be credible or correct. The lack of peer review and the often anonymous nature of the Inter-net creates a high risk for propagation of misinfor-mation.1–3In 1998, Brown et al reported 43% of adult patients had accessed the Internet to obtain health and med-ical information within 1 year of their outpatient office visit.4Kenneth et al reported a 40% increase in Internet access, from 36% in 1998% to 70% in 1999 among primary caretakers of children presenting to a large urban pediatric emergency department. In their study, 31% of the families used the Internet to obtain medical information.5
To date, no published study has documented In-ternet access and usage patterns among parents of children with congenital heart disease, which affects approximately 8/1000 live births in the United States annually. Although the majority of these children will not require cardiac surgery to correct the con-genital heart defect, there are ⬃10 000 cardiac sur-geries performed in neonates, children, and young adults each year.
Our Heart Center (pediatric cardiology, congenital heart surgery, and pediatric cardiac anesthesia) pro-vides medical and surgical care to approximately 650 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-sive referral base that is both socioeconomically and culturally diverse.
We sought to document the prevalence of Internet access and usage patterns among families who have children with congenital heart disease presenting for cardiac surgery.
From the Department of *Pediatrics and ‡Surgery, Texas Children’s Hos-pital, Baylor College of Medicine, Houston, Texas.
Received for publication Jun 11, 2001; accepted Sep 6, 2001.
Reprint requests to (A.R.M.) Lillie Frank Abercrombie Section of Pediatric Cardiology, Texas Children’s Hospital, 6621 Fannin, MC19345-C, Houston, TX 77030. E-mail: amott@bcm.tmc.edu
METHODS
Over a 6-month study period, a cross-sectional study was per-formed using a questionnaire (10 questions) as the primary study tool. During the preoperative surgical/medical clinic evaluations, informed consent was obtained and the questionnaire was admin-istered consecutively to patients in the target population—families of children undergoing elective palliative or definitive cardiac surgery. An elective procedure was defined as a nonemergent cardiac surgery. Families of neonates ⬍7 days of life were ex-cluded from the study. The questionnaires were available in 2 languages—English and Spanish. Demographic data including patient age at surgery, cardiac diagnosis, surgery date, cardiac operation, and associated medical conditions such as genetic syn-dromes, chromosomal abnormalities, or other congenital defects were collected from our cardiology patient database. The protocol was approved by the Texas Children’s Hospital Affiliates Review Board for Human Subject Research and the Baylor College of Medicine Institutional Review Board.
Statistical analysis was performed on all completed question-naires. The2test was used to evaluate categorical variables and thettest to evaluate continuous variables. Statistical significance was defined asP⫽.05. The SAS software package (SAS Institute Inc, Cary, NC) was used to conduct the analysis.
RESULTS
Between March 2000 and August 2000, 275 ques-tionnaires were completed and analyzed. One family declined participation in the study. The study group represents 80% of the cardiac surgeries performed during the study period and is representative of the usual surgery population. The cohort demographic data and a list of underlying congenital heart defects are listed (Table 1).
There were 33 children with the following associ-ated medical conditions: Trisomy 21 (N⫽21), Holt-Oram syndrome (N⫽3), isolated cleft palate (N⫽2), partial chromosomal deletion (N⫽ 2), choanal ste-nosis (N⫽1), Turner syndrome (N⫽1), velo-cardio-facial syndrome (N⫽1), VACTERL association (N⫽ 1), and Ellis-van Creveld syndrome (N⫽1).
Internet Access
Fifty-eight percent (160/275) of families had access to the Internet. Among parents with access, English was the primary language in 99% (158/160) com-pared with Spanish as the primary language in 1% (2/160) of families (P⫽.001), which represents 6% of the study cohort in which Spanish was the primary language. The most common locations for accessing the Internet were home in 80% (129/160) of respon-dents and work in 51% (82/160) of responrespon-dents. Many parents reported⬎1 location for accessing the Internet. Other locations included school (N⫽22) or a neighbor’s house (N⫽ 17).
Families with older children (12–24 years) were more likely to have Internet access when compared with children younger than 12 years old (P ⫽.001). Internet access was analyzed based on the underly-ing congenital heart defect, and there were no statis-tically significant differences in Internet access based on diagnosis other than heterotaxy syndrome (P ⫽ .02). The children were grouped based on broad diagnostic categories— cyanotic heart defects versus acyanotic heart defects and functional univentricular versus biventricular hearts. No statistically signifi-cant differences were found.
Internet access was analyzed for the most common
cardiac operations performed (Table 3). The families of children undergoing placement of a right ventricle to pulmonary artery conduit had a statistically sig-nificant increase in Internet access (P⫽.02). Cardiac operations were grouped based on palliative versus definitive repair and simple operations (closure of an atrial septal or ventricular septal defect, ligation of a patent ductus arteriosus, placement of a Blalock-Taussig shunt, or repair of coarctation of the aorta) versus complex operations. No statistically signifi-cant differences were found.
Internet Use
Of the 160 families with Internet access, 58% (93/ 160) used the Internet to obtain information related to their child’s cardiac diagnosis. Eighty-two percent (76/93) characterized locating cardiology-related in-formation as easy and 18% (17/93) as difficult. Fam-ilies spent an average of 3.2 hours/week “surfing” the Internet for cardiology-related information. Sev-enty-four percent (69/93) of families used the Inter-net for educational purposes before their child’s di-agnosis of congenital heart disease.
Among families who reported using the Internet to obtain cardiology information related to their child’s congenital heart defect, 53% (50/93) of families could name a favorite cardiology Web site on the survey. TABLE 1. Study Cohort Demographics and Congenital Heart Defect (N⫽275)
Demographics
Patient age 4.3 y
(7 d–24 y)
Gender Male Female
151 124
Primary language English Spanish
240 35
Underlying Congenital Heart Defects
VSD 33
Tetralogy of Fallot and pulmonary atresia/VSD 32
ASD (secundum) 22
Heterotaxy 19
Complete atrioventricular canal defect 19 Hypoplastic left heart syndrome 19
Coarctation of the aorta 14
D- Transposition of the great arteries 11
Double outlet right ventricle 11
Tricuspid valve atresia 8
ASD/VSD 8
ASD (sinus venosus) 8
Pulmonary valve stenosis 8
Pulmonary atresia/intact ventricular septum 7
L-TGA/ventricular inversion 7
Aortic valve stenosis 7
Total anomalous pulmonary venous return 6
Truncus arteriosus 5
Interrupted aortic arch 5
Discrete subaortic stenosis 4
Patent ductus arteriosus 4
Ebsteins anomaly of the tricuspid valve 3
Vascular ring 3
Double inlet left ventricle 3
ASD (primum) 2
ALCAPA 1
Other 6
VSD indicates ventricular septal defect; ASD, atrial septal defect; L-TGA, L-transposition of the great arteries; ALCAPA, anomalous left coronary artery from the pulmonary artery.
Six parents created interactive personal Web sites specifically related to their child’s congenital heart defect.
Older patients (12–24 years) were more likely to have Internet access when compared with younger children (P⫽.001). However, the difference in Inter-net usage between the age groups did not achieve statistical significance.
Internet use for cardiology-related information was analyzed based on the child’s underlying con-genital heart defect. No significant differences were found (Table 2). The children were grouped into broader diagnostic categories— cyanotic heart defect versus acyanotic heart defects and functional univen-tricular hearts versus bivenuniven-tricular hearts. No statis-tically significant differences were found.
For the most common cardiac operations per-formed, Internet use was analyzed and no statisti-cally significant differences were found (Table 3), nor was there a difference when operations were grouped into broader categories—palliative versus definitive operations and simple versus complex op-erations.
Internet Information Utility
Among families who accessed the Internet for car-diology-related information, 66% (61/93) of families characterized the information as very helpful in fur-thering the understanding of their child’s heart de-fect. Twenty-nine percent (27/93) characterized the information as helpful and 5% (5/93) as not being helpful.
Children With an Associated Medical Condition
Internet Access and Usage Trends
There were 33 children with associated medical conditions. Internet access was similar for these chil-dren when compared with chilchil-dren with isolated congenital heart defects, 58% (19/33) and 58% (141/ 242), respectively. The difference in Internet usage between the groups did not achieve statistical signif-icance.
DISCUSSION
“Direct electronic publishing of scientific studies threatens to undermine time-tested traditions that help to ensure the quality of medical literature.”1 Recent publications warn of the consequences of
dis-seminating nonpeer reviewed information on the In-ternet.1–3,6,7In 1998, McClung et al6investigated the quality of information a lay person could obtain from the Internet regarding treatment of childhood diar-rhea, presumably a straightforward, common medi-cal problem. Only 20% of Web sites from “traditional medical sources” concurred with American Acad-emy of Pediatrics guidelines regarding treatment of childhood diarrhea.
In response to the problem of outdated, misleading, incorrect information on the Internet, the American College of Cardiology (www.acc.org) has made a com-mitment to become the leading electronic source of guidelines and standards in the field of cardiology.7 The American Heart Association (www.american-heart.org) also has extensive information available on their Web site regarding acquired heart disease and congenital heart disease. The American Academy of Pediatrics (www.aap.org) has an updated review of pediatric cardiology-related Web sites.
We sought to document Internet usage trends in parents of children undergoing cardiac surgery for congenital heart disease. Given the complex, inva-sive nature of cardiac surgical intervention, we hy-pothesized that parents of an asymptomatic or min-imally symptomatic child are far more skeptical of the need for cardiac surgery to improve their child’s health than are the parents of a child who is obvi-ously symptomatic and/or cyanotic. The need for cardiac surgery in the absence of signs or symptoms, we thought, would be an impetus for parents to use the Internet to educate themselves about their child’s heart defect, its implications, and the different forms of medical treatment.
In our study, 34% of the families used the Internet to obtain information related to their child’s heart disease. Previously documented medical Internet use among adult and general pediatric populations were similar, 42% and 31%, respectively.4,5 Neither a child’s congenital heart defect nor complexity of sur-gery impacted the family’s use of the Internet to obtain cardiology-related information. The majority of our families perceived the information on the In-ternet as helpful with regards to understanding their child’s congenital heart disease and upcoming sur-gery. This study did not address the content, accu-racy, or credibility of information available on the Internet.
TABLE 2. Internet Access and Use According to Cardiac Defect
Cardiac Defect Internet Access Internet Use
CHD Cohort PValue CHD Cohort PValue
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
Parents who identified Spanish as their primary language had decreased access to the Internet (P ⫽ .001). Previous studies have shown that socioeco-nomic status and parental educational level are re-lated to Internet access rather than ethnicity or pri-mary language.5 In our cohort, bilingual families may have chosen an English questionnaire, there-fore, the decrease in Internet access among families with Spanish as their primary language may reflect educational level rather than ethnicity.
There was decreased Internet access in families of children with heterotaxy syndrome (P ⫽ .02). They represent a small subset of the study cohort. Al-though there was a statistically significant difference, the clinical implications of this finding have yet to be determined and can only be speculative.
Among the subset of families with associated med-ical conditions and congenital heart disease, there may be increased Internet usage, however, attribut-able to the small sample size, we were unattribut-able to show statistical significance. Some subgroup analy-ses were based on small numbers with low power associated with those comparisons. We acknowledge this as a limitation of the study.
CONCLUSION
The Internet is a significant medium with which to disseminate information; and if used correctly, can
be an equally effective educational tool in the field of medicine. Our study confirms that families are using the Internet to educate themselves about congenital heart disease. Most parents consider the process easy and the information obtained helpful to the under-standing of their child’s congenital heart defect and surgery. Internet use in this patient population is expected to increase. Our vigilance in providing ac-curate Internet references, as well as in identifying inaccurate Internet information available to our pa-tients and their parents, is of paramount importance.
REFERENCES
1. Kassirer JP, Angell M. The Internet and the journal. N Engl J Med. 1995;332:709 –1710
2. Abdulla R. Pediatric cardiology and the electronic literature.Pediatr Cardiol. 1997;18:321–322
3. Elliott SJ, Elliott RG. Internet list servers and pediatrics: newly emerging legal and clinical practice issues.Pediatrics. 1996;97:399 – 400
4. Brown MS. What’s up on the Internet: physician Internet use growing rapidly.Med Pract Commun. 1998;5:7
5. Kenneth MD, Feit S, Pena BM, Kohane IS. Growth and determinants of access in patient E-mail and Internet use.Arch Pediatr Adolesc Med. 2000;154:508 –511
6. McClung HJ, Murray RD, Heitlinger LA. The Internet as a source for current patient information.Pediatrics. 1998;101(6). Available at: http:// www.pediatrics.org/cgi/content/full/101/6/e2
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LAUDABLE CAUTION
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Submitted by Student TABLE 3. Internet Access and Use According to Cardiac Surgery
Cardiac Surgery Internet Access Internet Use
Surgery Cohort PValue Surgery Cohort PValue
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.
DOI: 10.1542/peds.109.3.419
2002;109;419
Pediatrics
E. Dean McKenzie, Naeema Shah and Antonio R. Mott
Catherine M. Ikemba, Claudia A. Kozinetz, Timothy F. Feltes, Charles D. Fraser, Jr,
Congenital Heart Disease
Internet Use in Families With Children Requiring Cardiac Surgery for
Services
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DOI: 10.1542/peds.109.3.419
2002;109;419
Pediatrics
E. Dean McKenzie, Naeema Shah and Antonio R. Mott
Catherine M. Ikemba, Claudia A. Kozinetz, Timothy F. Feltes, Charles D. Fraser, Jr,
Congenital Heart Disease
Internet Use in Families With Children Requiring Cardiac Surgery for
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