REVIEW URRENT C OPINION
Health risk behaviors in adolescents and young adults with special health care needs Mariecel Pilapil a,b and David DeLaet c
Purpose of review Adolescents and young adults with special health care needs (SHCN) are uniquely vulnerable to health risk behaviors including smoking, alcohol and illicit drug use, and sexual risk-taking. Their likelihood of experiencing adverse health outcomes because of these behaviors may be beyond that experienced by their healthier peer group. Pediatric providers are responsible for appropriately counseling these patients about healthy lifestyles. This review provides some background regarding these health risks among adolescents and young adults with SHCN with particular focus on three populations: childhood cancer survivors, congenital heart disease patients, and those with intellectual disability. Recent findings Young adults and adolescents with chronic medical conditions are as likely – and perhaps more likely – to engage in health risk behaviors. However, these behaviors are not fully addressed by primary care providers. Summary Pediatric providers are encouraged to ask adolescents and young adults with SHCN about their understanding of, and engagement in, health risk behaviors. A multidisciplinary approach to encourage a healthy lifestyle within this population may have significant health benefits. Keywords adolescents, health risk behaviors, special health care needs, young adults
INTRODUCTION Adolescents and young adults with special health care needs (SHCN) are defined as ‘those who have or are at risk for chronic physical, developmental, behavioral or emotional conditions who require health and related services of a type and amount beyond that required by children and youth generally’ [1]. In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians published a consensus statement that advised primary care providers to ‘apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs’ [2]. An essential component of primary care is counseling patients regarding healthy lifestyles and advising against health risk behaviors including the use of drugs and alcohol, smoking, and sexual risk-taking. These health risks may be overlooked in complex patients with multiple chronic conditions, posing a challenge for pediatric providers caring for this patient population. www.co-pediatrics.com
HEALTH RISK BEHAVIORS IN ADOLESCENTS AND YOUNG ADULTS WITH SPECIAL HEALTH CARE NEEDS It was previously thought that chronic medical conditions, by restricting opportunities to engage in high-risk health behaviors, were ‘protective’ against risk-taking behavior among individuals with SHCN. However, it has been shown that these individuals may be as likely, or even more likely, to engage in risky behaviors including substance use [3],
a
Department of Medicine, Division of General Internal Medicine, Department of Pediatrics, Division of General Pediatrics, Hofstra North Shore-LIJ School of Medicine/Steven & Alexandra Cohen Children’s Medical Center, New Hyde Park and cDepartment of Medicine, Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, New York, USA b
Correspondence to Mariecel Pilapil, MD, MPH, General Pediatrics, 410 Lakeville Road, Suite 108, New Hyde Park, NY 11042, USA. Tel: +1 516 465 4377; e-mail: [email protected] Curr Opin Pediatr 2015, 27:132–137 DOI:10.1097/MOP.0000000000000177 Volume 27 Number 1 February 2015
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Health risk behaviors and special health care needs Pilapil and DeLaet
KEY POINTS Adolescents and young adults with special health care needs are engaging in health risk behaviors including high-risk sexual activity, smoking, and substance use such as alcohol. Patients with special health care needs are at high risk for negative health consequences due to risk-taking behaviors. Risk behaviors among adolescents and young adults with SHCN are under-addressed by pediatric providers. Pediatric providers should employ screening strategies routinely to identify health risk behaviors among adolescents and young adults with SHCN and counsel them appropriately.
high-risk sexual activity [4,5], and smoking [3,6–8]. In 2008, Suris et al. [3] compared adolescents with a chronic illness, disability, or both, to their healthy counterparts and found that youth with chronic conditions were more likely to smoke, use marijuana, and engage in multiple health risk behaviors. Pediatric providers are challenged with balancing the management of chronic medical conditions with counseling patients about health risk behaviors. In addition, adolescents and young adults with SHCN constitute a population for whom pediatric providers must weigh encouraging responsibility for one’s own health versus protection from potential harm. Parents and caregivers are often highly involved in the care of these patients, which may create further barriers to an open discussion about such behaviors.
RISK BEHAVIORS IN SPECIFIC DISEASE POPULATIONS In this review, we highlight three specific disease populations of patients with SHCN. We review what is known about their risk-taking behaviors and offer suggestions for how pediatric providers may intervene.
Childhood cancer survivors As a result of improvements in therapies for childhood cancer, there are more than 300 000 childhood cancer survivors (CCSs) in the United States [9]. CCSs are three times more likely to develop a chronic health condition than their healthy counterparts. These health problems include secondary malignancies, pulmonary conditions, and cardiovascular events owing to their history of
cancer and related therapies [10]. Because CCSs are at high risk for adverse health effects, it is important to advise them appropriately regarding any high-risk behaviors. Furthermore, CCSs are less likely to report health risk behaviors including past tobacco use, current use of alcohol, and binge drinking, making it imperative that pediatric providers devote time to inquire about these habits [11]. Substance use It has been demonstrated that there is a higher prevalence of smoking among young adult CCSs compared with those without a history of cancer (26% vs. 18%) [12]. Smoking is a known risk factor for cardiovascular disease, for which CCSs are already at higher risk. Deficiencies in patients’ perceived risk may play a role in high smoking rates. Despite knowing their increased risk of chronic health problems, 20% of currently smoking CCSs did not believe that smoking increases their chance of developing future health problems [13 ]. It therefore becomes the responsibility of the pediatric provider to inquire about smoking, inform CCSs of its risks, and offer strategies to quit. A longitudinal study of more than 300 smokers who were childhood or young adult cancer survivors showed that only 55% received advice to quit smoking and only 36% reported that their provider discussed pharmacotherapy with them [14 ]. These data underscore the importance of enhanced efforts to counsel these patients on smoking cessation. Although the majority of data on smoking cessation in this population is primarily in the adult literature, pediatric providers should consider referral to adolescent-oriented peer smoking cessation programs and guide patients toward health media on smoking cessation, as such programs have been shown to improve quit rates in this population [15,16]. High alcohol consumption including binge drinking is known to increase mortality from cardiovascular disease and cancer. Among cancer survivors who are already at high risk for chronic health issues, it is particularly important to counsel patients regarding alcohol use. A large Swiss study evaluated alcohol consumption among young adult CCSs and found that survivors were more likely to consume alcohol frequently and to engage in binge drinking [17]. These results are in contrast to published articles using data from the Childhood Cancer Survivor Study (CCSS), a Canadian cohort, and a British cohort that showed survivors to be slightly less likely to be heavy and risky drinkers compared with peer and sibling controls [18–20]. In addition, male survivors appear to be more likely to exhibit unhealthy drinking habits [17]. Pediatric providers must advise CCSs regarding their unique
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health risks and encourage alcohol consumption in moderation, particularly at a time when adolescent survivors may be exposed to peer pressure to drink. Sexual health High-risk sexual behaviors, including multiple sexual partners, early age of first sexual intercourse, and unprotected sex, can lead to unwanted pregnancy and increase the risk of transmission of sexually transmitted infections (STIs) such as human papillomavirus (HPV). In an analysis of an adolescent subset of the CCSS cohort, CCSs were shown to have equivalent rates of risky sexual behaviors compared with matched controls [11]. In addition to their increased risk of chronic illness, both male and female survivors of childhood cancer are at increased risk for developing HPV-associated malignancies [21 ]. It is important to counsel CCSs regarding safer sexual practices as a means to prevent transmission of STIs, including HPV, as well as unintended pregnancy. Encouragement of HPV vaccination may also reduce risk in this population. However, a survey of mothers of female CCSs showed that only 32% initiated the HPV vaccine series and only 17.9% completed the series, which was lower than those in the control group [22 ]. Patient education about safer sexual practices, including condom use for STI prevention and the benefits of HPV vaccination, should be incorporated into routine care for this patient population. This counseling should be undertaken with the recognition of any potential underlying mental health concerns, as CCSs are vulnerable to psychiatric conditions and psychological distress [23,24]. &
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Congenital heart defects Congenital heart defects are among the most common group of birth defects, occurring in approximately six of every 1000 live births [25,26]. As a result of improvements in diagnostic and interventional cardiology, more than 90% of such individuals now survive to adulthood, with an estimated population of adults with congenital heart disease (CHD) of more than one million [27]. Though congenital heart defects vary from mild to complex in severity, individuals with CHD have an overall decreased life expectancy largely because of delayed cardiovascular complications such as ventricular dysfunction or arrhythmias [28]. Additionally, females with CHD are at increased risk for cardiovascular complications associated with pregnancy and the postpartum state [29]. Adolescents and young adults with CHD should therefore be regularly screened for behaviors that further increase their risk for adverse outcomes. 134
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Substance use Adults with CHD have an overall decreased life expectancy owing to their increased risk of heart arrhythmia, heart failure, and sudden cardiac death [28,30]. The adverse impact of tobacco, cocaine, and alcohol use on the cardiovascular system is well known, and it has been shown that acute marijuana use is associated with transient tachycardia and an increase in cardiac output [31]. As such, adolescents and young adults with CHD should regularly be screened for social habits such as tobacco, alcohol, and substance use that further increase their risk for adverse outcomes. A recent study of 328 adolescents and young adults aged 16–20 years suggested that both recent (within the last 30 days) and lifetime substance use of tobacco, alcohol, marijuana, and other illicit drugs among CHD patients was either comparable or lower than healthier peers of the same age [32]. Reported use among subjects with CHD was still noteworthy, with 54% of those aged 19–20 years and 28% of those aged 16–18 years reporting significant use during the previous 30 days. A recent survey of 1496 adults with CHD as compared with 6810 unaffected adults demonstrated comparable rates of alcohol use between the two groups, but lower rates of smoking and illicit drug use among those with CHD [33]. Among subjects with CHD, 81% reported current alcohol use, 13% reported lifetime cannabis use, 6% reported lifetime use of other illicit drugs, and 13% were identified as current smokers, with no significant difference in use when comparing individuals with mild, moderate, or severe heart defects. These rates highlight the importance of screening for health risk behaviors among adolescents and young adults with CHD given their increased risk for adverse cardiovascular outcomes. Sexual health Females with CHD are at increased risk for cardiovascular complications during pregnancy, most commonly congestive heart failure, arrhythmia, and thromboembolic events [29]. Further, women with CHD may be at an increased risk for thromboembolic complications associated with combined estrogen and progestin contraceptive therapy, and recommendations exist to guide individual contraceptive choices based on the specific heart defect that is present [34]. It is therefore imperative that adolescents and young adults with CHD receive counseling prior to sexual debut about their individual risk of pregnancy as well as education about condition-specific contraceptive options. A recent analysis of data from the National Health and Nutrition Examination Survey evaluated the sexual practices of 29 patients with CHD and 1057 control subjects without CHD among individuals aged Volume 27 Number 1 February 2015
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Health risk behaviors and special health care needs Pilapil and DeLaet
20 years and older. As compared with control subjects, individuals with CHD reported no significant difference in age at first sexual intercourse (15.9 9.4 years among those with CHD vs. 16.2 4.7 years among those without CHD; P ¼ 0.386), number of lifetime sexual partners, or reported condom use [35 ]. These data underscore the importance of providing contraceptive education to adolescents with CHD prior to coitarche. However, results from two recent studies reveal that such counseling and education are not being routinely provided [36 ,37]. A cross-sectional survey of 83 women 19 years or older with CHD followed in an adult CHD clinic were surveyed to assess their receipt of reproductive and contraceptive counseling as well use of high-risk or contraindicated contraceptive methods [36 ]. This survey showed that 54% of participants reported that a health-care professional had never discussed with them condition-specific options for contraception, and of those who did report receiving counseling, only 47% received such counseling prior to first engagement in sexual intercourse. A history of using a method contraindicated given their underlying heart condition was reported in 12% of those surveyed. Another study of 536 adult women with CHD demonstrated similar results, with 20% of women actively using contraceptive methods that were contraindicated for their specific cardiac condition, 43% reporting not having been counseled about contraception, and 48% reporting not having been counseled about pregnancy-related risks [37]. These findings suggest that pediatric providers must develop strategies to assure that this critical component of health risk behavior counseling is being offered to adolescents and young adults with CHD seen in their practices. &
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Intellectual disability Intellectual disability, defined as a condition of arrested or incomplete development of the mind characterized by impairment of skills and overall intelligence in areas such as cognition, language, and motor and social abilities, has an overall global prevalence rate of 1–3% [38,39]. Individuals with intellectual disability have been demonstrated to have a decreased life expectancy compared with the general population [40]. Given the increased risk for premature death among this population, pediatric providers must be equipped to provide comprehensive disease management, including routine health risk behavior assessment, to adolescents and young adults with intellectual disability. Substance use An analysis of the deaths of 247 people with intellectual disability in the United Kingdom revealed
that the median age of death as compared with the general population was 13 years younger among males and 20 years younger among females [40]. Though the median age of death decreased as the severity of intellectual disability increased, a premature age of death was noted even among those with mild intellectual disability. These findings underscore the importance of reducing the impact of modifiable health risk behaviors among adolescents and young adults with intellectual disability. A recent survey of more than 46 000 households with young children in the United Kingdom sought to estimate the prevalence of parental health behaviors among parents with and without intellectual disability [41 ]. Among both single-parent and twoparent households, parents with intellectual disability were significantly more likely to report smoking, abuse of drugs, and abuse of alcohol than those without intellectual disability. Similarly, a recent analysis of cross-sectional data in the United Kingdom of more than 50 000 individuals aged 16 years and older, 520 of whom had self-reported intellectual disability, demonstrated significantly greater self-reported current smoking [adjusted odds ratio (OR) 2.03, 95% confidence interval (CI) 1.59–2.58] and self-reported daily alcohol use (adjusted OR 2.01, 95% CI 1.29–3.13) among individuals with self-reported intellectual disability than those without [42 ]. These data reveal that adolescents and adults with intellectual disability may be more likely to engage in health risk behaviors than the general population. Pediatric providers should routinely screen in a developmentally appropriate manner for substance use among this patient population. &
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Sexual health Individuals with intellectual disability pose unique challenges when considering sexuality and sexual health. Providers must address the issue of capacity to consent to sexual activity with individuals with intellectual disability and their families [43]. Additionally, it has been shown that individuals with intellectual disability are at increased risk for sexual abuse [44]. Lastly, discussions of sexuality and sexual health must be adapted to the developmental level of the individual with intellectual disability. However, data show that issues of sexual health among this population are not being adequately addressed. A recent study formally assessed sexual knowledge among 30 adolescents with mild intellectual disability and 30 nondisabled adolescents 16–21 years of age [45 ]. Nondisabled adolescents scored significantly higher than those with intellectual disability on sexual knowledge subscales of physical changes of puberty, reproduction, contraception, and sexually transmitted
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diseases. Although more than half (n ¼ 16) of nondisabled adolescents reported receiving information on sexual health from a doctor, only three adolescents with intellectual disability reported receiving such education. These findings are consistent with previous studies demonstrating gaps in sexual knowledge and lack of sexual education among adolescents with intellectual disability [46,47]. Pediatric providers should examine current practices and institute necessary changes to assure that adolescents and young adults with intellectual disability receive appropriate sexual health counseling and care.
CONCLUSION Adolescents and young adults with SHCN are at risk for adverse health outcomes that may be worsened by engaging in health risk behaviors. Pediatric providers have an opportunity to reduce substance use, sexual risk-taking, and smoking in this population. Psychosocial screening tools such as the Home, Education/employment, peer group Activities, Drugs, Sexuality, and Suicide/Depression (HEADSS) assessment are part of routine adolescent care and should be similarly applied in a developmentally appropriate manner to this population, regardless of their other comorbidities. Potential barriers to appropriate screening and counseling include time limitations, strong parental involvement in medical care, and the provider’s comfort level. Pediatricians can encourage healthy lifestyle choices by assessing the patient’s knowledge of their own health risks, asking about their engagement in risky behaviors, and advising them on ways to refrain from such behaviors. Pediatricians should enlist the help of other staff members including counselors, social workers, and peer educators in reducing health risk behaviors with the hope of improving overall health in this vulnerable population. Acknowledgements None. Financial support and sponsorship None. Conflicts of interest None.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. McPherson M, Arango P, Fox H, et al. A new definition of children with special healthcare needs. Pediatrics 1998; 102 (1 Pt 1):137–140.
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2. American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP), American College of Physicians-American Society of Internal Medicine, (ACP-ASIM). A consensus statement on healthcare transitions for young adults with special healthcare, needs. Pediatrics 2002; 110 (6 Pt 2): 1304–1306. 3. Surı´s JC, Michaud PA, Akre C, Sawyer SM. Health risk behaviors in adolescents with chronic conditions. Pediatrics 2008; 122:e1113–e1118. 4. Choquet M, Du Pasquier Fediaevsky L, Manfredi R. Sexual behavior among adolescents reporting chronic conditions: a French national survey. J Adolesc Health 1997; 20:62–67. 5. Valencia LS, Cromer BA. Sexual activity and other high-risk behaviors in adolescents with chronic illness: a review. J Pediatr Adolesc Gynecol 2000; 13:53–64. 6. Suris JC, Parera N. Sex drugs and chronic illness: health behaviours among chronically ill youth. Eur J Public Health 2005; 15:484–488. 7. Miauton L, Narring F, Michaud PA. Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland. Eur J Pediatr 2003; 162:682–689. 8. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet 2007; 369:1481– 1489. 9. Mariotto AB, Rowland JH, Yabroff KR, et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomarkers Prev 2009; 18:1033–1040. 10. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 2006; 355:1572–1582. 11. Klosky JL, Howell CR, Li Z, et al. Risky health behavior among adolescents in the childhood cancer survivor study cohort. J Pediatr Psychol 2012; 37:634– 646. 12. Tai E, Buchanan N, Townsend J, et al. Health status of adolescent and young adult cancer survivors. Cancer 2012; 118:4884–4891. 13. Ford JS, Puleo E, Sprunck-Harrild K, et al. Perceptions of risk among child& hood and young adult cancer survivors who smoke. Support Care Cancer 2014; 22:2207–2217. This multicenter telephone survey of more than 300 cancer survivors between 18 and 55 years old showed that a significant proportion did not perceive an increased risk of chronic health problems owing to smoking. 14. Emmons KM, Sprunck-Harrild K, Puleo E, de Moor J. Provider advice about & smoking cessation and pharmacotherapy among cancer survivors who smoke: practice guidelines are not translating. Transl Behav Med 2013; 3:211–217. This survey of more than 300 CCSs revealed that a significant proportion of actively smoking survivors did not receive appropriate smoking cessation counseling. 15. Emmons KM, Puleo E, Sprunck-Harrild K, et al. Partnership for health-2, a web-based versus print smoking cessation intervention for childhood and young adult cancer survivors: randomized comparative effectiveness study. J Med Internet Res 2013; 15:e218. 16. Nagler RH, Puleo E, Sprunck-Harrild K, et al. Health media use among childhood and young adult cancer survivors who smoke. Support Care Cancer 2014; 22:2497–2507. 17. Rebholz CE, Kuehni CE, Strippoli MP, et al. Alcohol consumption and binge drinking in young adult childhood cancer survivors. Pediatr Blood Cancer 2012; 58:256–264. 18. Lown EA, Goldsby R, Mertens AC, et al. Alcohol consumption patterns and risk factors among childhood cancer survivors compared to siblings and general population peers. Addiction 2008; 103:1139–1148. 19. Carswell K, Chen Y, Nair RC, et al. Smoking and binge drinking among Canadian survivors of childhood and adolescent cancers: a comparative, population-based study. Pediatr Blood Cancer 2008; 51:280–287. 20. Frobisher C, Lancashire ER, Reulen RC, et al. Extent of alcohol consumption among adult survivors of childhood cancer: the British Childhood Cancer Survivor Study. Cancer Epidemiol Biomarkers Prev 2010; 19:1174–1184. 21. Ojha RP, Tota JE, Offutt-Powell TN, et al. Human papillomavirus-associated & subsequent malignancies among long-term survivors of pediatric and young adult cancers. PLoS One 2013; 8:e70349. This study of longitudinal data from more than 60 000 long-term survivors of pediatric and young adult cancers showed increased rates of HPV-associated malignancies in this population. 22. Klosky JL, Russell KM, Canavera KE, et al. Risk factors for noninitiation of the & human papillomavirus vaccine among adolescent survivors of childhood cancer. Cancer Prev Res (Phila) 2013; 6:1101–1110. This cross-sectional survey of mothers of female childhood cancer survivors demonstrated low rates of initiation and completion of HPV vaccination series in this population. 23. Gianinazzi ME, Rueegg CS, Wengenroth L, et al. Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology 2013; 22:2051–2058. 24. Gianinazzi ME, Rueegg CS, von der Weid NX, et al. Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study. Support Care Center 2014; 22:339–349. 25. Tanner K, Sabrine N, Wren C. Cardiovascular malformations among preterm infants. Pediatrics 2005; 116:e833–e838.
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Health risk behaviors and special health care needs Pilapil and DeLaet 26. Wren C, Irving CA, Griffiths JA, et al. Mortality in infants with cardiovascular malformations. Eur J Pediatr 2012; 171:281–287. 27. Williams RG, Pearson GD, Barst RJ, et al. Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol 2006; 47:701–707. 28. Oechslin EN, Harrison DA, Connelly MS, et al. Mode of death in adults with congenital heart disease. Am J Cardiol 2000; 86:1111–1116. 29. Rao S, Ginns JN. Adult congenital heart disease and pregnancy. Semin Perinatol 2014; 38:260–272. 30. Nieminen HP, Jokinen EV, Sairanen HI. Causes of late deaths after pediatric cardiac surgery: a population-based study. J Am Coll Cardiol 2007; 50:1263–1271. 31. Ghuran A, Nolan J. Recreational drug misuse: issues for the cardiologist. Heart 2000; 83:627–633. 32. Reid GJ, Webb GD, McCrindle BW, et al. Health behaviors among adolescents and young adults with congenital heart disease. Congenit Heart Dis 2008; 3:16–25. 33. Zomer AC, Vaartjes I, Uiterwaal CS, et al. Social burden and lifestyle in adults with congenital heart disease. Am J Cardiol 2012; 109:1657–1663. 34. Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J Am Coll Cardiol 2008; 52:e143–e263. 35. Loomba RS, Aggarwal S, Pelech AN. Addressing sexual health in congenital & heart disease: when being the same isn’t the same. Congenit Heart Dis 2014; doi: 10.1111/chd.12168. [Epub ahead of print] This analysis of National Health and Nutrition Examination Survey data among adults 20 years and older revealed no difference between individuals with and without CHD in age of first sexual intercourse, number of lifetime sexual partners, and condom use. 36. Hinze A, Kutty S, Sayles H, et al. Reproductive and contraceptive counseling & received by adult women with congenital heart disease: a risk-based analysis. Congenit Heart Dis 2013; 8:20–31. This cross-sectional survey of 83 women 19 years or older with CHD demonstrated low levels of condition-specific counseling about contraception and significant use of contraindicated contraception methods.
37. Vigl M, Kaemmerer M, Seifert-Klauss V, et al. Contraception in women with congenital heart disease. Am J Cardiol 2010; 106:1317–1321. 38. World Health Organization. The World Health Report 2001 – Mental Health: New Understanding, New Hope. Geneva: World Health Organization; 2007. http://www.who.int/whr/2001/en/whr01_en.pdf. [Accessed 28 August 2014] 39. Maulik PK, Mascarenhas MN, Mathers CD, et al. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil 2011; 32:419–436. 40. Heslop P, Blair PS, Fleming P, et al. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014; 383:889–895. 41. Emerson E, Brigham P. Health behaviours and mental health status of parents & with intellectual disabilities: cross sectional study. Public Health 2013; 127:1111–1116. This survey of more than 46 000 households with young children showed that parents with intellectual disability were significantly more likely to report smoking, abuse of drugs, and abuse of alcohol than those without intellectual disability. 42. Robertson J, Emerson E, Baines S, Hatton C. Obesity and health behaviours & of British adults with self-reported intellectual impairments: cross sectional survey. BMC Public Health 2014; 14:219. This cross-sectional study of more than 50 000 individuals 16 years and older revealed a significantly greater reported current smoking rate and daily alcohol use among individuals with intellectual disability than those without intellectual disability. 43. Eastgate G. Sex, consent and intellectual disability. Aust Fam Physician 2005; 34:163–166. 44. Horner-Johnson W, Drum CE. Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research. Ment Retard Dev Disabil Res Rev 2006; 12:57–69. 45. Jahoda A, Pownall J. Sexual understanding, sources of information and social & networks; the reports of young people with intellectual disabilities and their nondisabled peers. J Intellect Disabil Res 2014; 58:430–441. This study of 30 adolescents with intellectual disability and 30 nondisabled adolescents found that nondisabled adolescents scored higher on sexual knowledge scales and were more likely to receive sexual education from physicians than adolescents with intellectual disability. 46. Isler A, Tas F, Beytut D, Conk Z. Sexuality in adolescents with intellectual disabilities. Sexuality and Disability 2009; 27:27–34. 47. Cheng MM, Udry JR. How much do mentally disabled adolescents know about sex and birth control? Adolesc Fam Health 2003; 3:28–38.
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Health risk behaviors in adolescents and young adults with special health care needs Mariecel Pilapil a,b and David DeLaet c
Purpose of review Adolescents and young adults with special health care needs (SHCN) are uniquely vulnerable to health risk behaviors including smoking, alcohol and illicit drug use, and sexual risk-taking. Their likelihood of experiencing adverse health outcomes because of these behaviors may be beyond that experienced by their healthier peer group. Pediatric providers are responsible for appropriately counseling these patients about healthy lifestyles. This review provides some background regarding these health risks among adolescents and young adults with SHCN with particular focus on three populations: childhood cancer survivors, congenital heart disease patients, and those with intellectual disability. Recent findings Young adults and adolescents with chronic medical conditions are as likely – and perhaps more likely – to engage in health risk behaviors. However, these behaviors are not fully addressed by primary care providers. Summary Pediatric providers are encouraged to ask adolescents and young adults with SHCN about their understanding of, and engagement in, health risk behaviors. A multidisciplinary approach to encourage a healthy lifestyle within this population may have significant health benefits. Keywords adolescents, health risk behaviors, special health care needs, young adults
INTRODUCTION Adolescents and young adults with special health care needs (SHCN) are defined as ‘those who have or are at risk for chronic physical, developmental, behavioral or emotional conditions who require health and related services of a type and amount beyond that required by children and youth generally’ [1]. In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians published a consensus statement that advised primary care providers to ‘apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs’ [2]. An essential component of primary care is counseling patients regarding healthy lifestyles and advising against health risk behaviors including the use of drugs and alcohol, smoking, and sexual risk-taking. These health risks may be overlooked in complex patients with multiple chronic conditions, posing a challenge for pediatric providers caring for this patient population. www.co-pediatrics.com
HEALTH RISK BEHAVIORS IN ADOLESCENTS AND YOUNG ADULTS WITH SPECIAL HEALTH CARE NEEDS It was previously thought that chronic medical conditions, by restricting opportunities to engage in high-risk health behaviors, were ‘protective’ against risk-taking behavior among individuals with SHCN. However, it has been shown that these individuals may be as likely, or even more likely, to engage in risky behaviors including substance use [3],
a
Department of Medicine, Division of General Internal Medicine, Department of Pediatrics, Division of General Pediatrics, Hofstra North Shore-LIJ School of Medicine/Steven & Alexandra Cohen Children’s Medical Center, New Hyde Park and cDepartment of Medicine, Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, New York, USA b
Correspondence to Mariecel Pilapil, MD, MPH, General Pediatrics, 410 Lakeville Road, Suite 108, New Hyde Park, NY 11042, USA. Tel: +1 516 465 4377; e-mail: [email protected] Curr Opin Pediatr 2015, 27:132–137 DOI:10.1097/MOP.0000000000000177 Volume 27 Number 1 February 2015
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Health risk behaviors and special health care needs Pilapil and DeLaet
KEY POINTS Adolescents and young adults with special health care needs are engaging in health risk behaviors including high-risk sexual activity, smoking, and substance use such as alcohol. Patients with special health care needs are at high risk for negative health consequences due to risk-taking behaviors. Risk behaviors among adolescents and young adults with SHCN are under-addressed by pediatric providers. Pediatric providers should employ screening strategies routinely to identify health risk behaviors among adolescents and young adults with SHCN and counsel them appropriately.
high-risk sexual activity [4,5], and smoking [3,6–8]. In 2008, Suris et al. [3] compared adolescents with a chronic illness, disability, or both, to their healthy counterparts and found that youth with chronic conditions were more likely to smoke, use marijuana, and engage in multiple health risk behaviors. Pediatric providers are challenged with balancing the management of chronic medical conditions with counseling patients about health risk behaviors. In addition, adolescents and young adults with SHCN constitute a population for whom pediatric providers must weigh encouraging responsibility for one’s own health versus protection from potential harm. Parents and caregivers are often highly involved in the care of these patients, which may create further barriers to an open discussion about such behaviors.
RISK BEHAVIORS IN SPECIFIC DISEASE POPULATIONS In this review, we highlight three specific disease populations of patients with SHCN. We review what is known about their risk-taking behaviors and offer suggestions for how pediatric providers may intervene.
Childhood cancer survivors As a result of improvements in therapies for childhood cancer, there are more than 300 000 childhood cancer survivors (CCSs) in the United States [9]. CCSs are three times more likely to develop a chronic health condition than their healthy counterparts. These health problems include secondary malignancies, pulmonary conditions, and cardiovascular events owing to their history of
cancer and related therapies [10]. Because CCSs are at high risk for adverse health effects, it is important to advise them appropriately regarding any high-risk behaviors. Furthermore, CCSs are less likely to report health risk behaviors including past tobacco use, current use of alcohol, and binge drinking, making it imperative that pediatric providers devote time to inquire about these habits [11]. Substance use It has been demonstrated that there is a higher prevalence of smoking among young adult CCSs compared with those without a history of cancer (26% vs. 18%) [12]. Smoking is a known risk factor for cardiovascular disease, for which CCSs are already at higher risk. Deficiencies in patients’ perceived risk may play a role in high smoking rates. Despite knowing their increased risk of chronic health problems, 20% of currently smoking CCSs did not believe that smoking increases their chance of developing future health problems [13 ]. It therefore becomes the responsibility of the pediatric provider to inquire about smoking, inform CCSs of its risks, and offer strategies to quit. A longitudinal study of more than 300 smokers who were childhood or young adult cancer survivors showed that only 55% received advice to quit smoking and only 36% reported that their provider discussed pharmacotherapy with them [14 ]. These data underscore the importance of enhanced efforts to counsel these patients on smoking cessation. Although the majority of data on smoking cessation in this population is primarily in the adult literature, pediatric providers should consider referral to adolescent-oriented peer smoking cessation programs and guide patients toward health media on smoking cessation, as such programs have been shown to improve quit rates in this population [15,16]. High alcohol consumption including binge drinking is known to increase mortality from cardiovascular disease and cancer. Among cancer survivors who are already at high risk for chronic health issues, it is particularly important to counsel patients regarding alcohol use. A large Swiss study evaluated alcohol consumption among young adult CCSs and found that survivors were more likely to consume alcohol frequently and to engage in binge drinking [17]. These results are in contrast to published articles using data from the Childhood Cancer Survivor Study (CCSS), a Canadian cohort, and a British cohort that showed survivors to be slightly less likely to be heavy and risky drinkers compared with peer and sibling controls [18–20]. In addition, male survivors appear to be more likely to exhibit unhealthy drinking habits [17]. Pediatric providers must advise CCSs regarding their unique
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health risks and encourage alcohol consumption in moderation, particularly at a time when adolescent survivors may be exposed to peer pressure to drink. Sexual health High-risk sexual behaviors, including multiple sexual partners, early age of first sexual intercourse, and unprotected sex, can lead to unwanted pregnancy and increase the risk of transmission of sexually transmitted infections (STIs) such as human papillomavirus (HPV). In an analysis of an adolescent subset of the CCSS cohort, CCSs were shown to have equivalent rates of risky sexual behaviors compared with matched controls [11]. In addition to their increased risk of chronic illness, both male and female survivors of childhood cancer are at increased risk for developing HPV-associated malignancies [21 ]. It is important to counsel CCSs regarding safer sexual practices as a means to prevent transmission of STIs, including HPV, as well as unintended pregnancy. Encouragement of HPV vaccination may also reduce risk in this population. However, a survey of mothers of female CCSs showed that only 32% initiated the HPV vaccine series and only 17.9% completed the series, which was lower than those in the control group [22 ]. Patient education about safer sexual practices, including condom use for STI prevention and the benefits of HPV vaccination, should be incorporated into routine care for this patient population. This counseling should be undertaken with the recognition of any potential underlying mental health concerns, as CCSs are vulnerable to psychiatric conditions and psychological distress [23,24]. &
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Congenital heart defects Congenital heart defects are among the most common group of birth defects, occurring in approximately six of every 1000 live births [25,26]. As a result of improvements in diagnostic and interventional cardiology, more than 90% of such individuals now survive to adulthood, with an estimated population of adults with congenital heart disease (CHD) of more than one million [27]. Though congenital heart defects vary from mild to complex in severity, individuals with CHD have an overall decreased life expectancy largely because of delayed cardiovascular complications such as ventricular dysfunction or arrhythmias [28]. Additionally, females with CHD are at increased risk for cardiovascular complications associated with pregnancy and the postpartum state [29]. Adolescents and young adults with CHD should therefore be regularly screened for behaviors that further increase their risk for adverse outcomes. 134
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Substance use Adults with CHD have an overall decreased life expectancy owing to their increased risk of heart arrhythmia, heart failure, and sudden cardiac death [28,30]. The adverse impact of tobacco, cocaine, and alcohol use on the cardiovascular system is well known, and it has been shown that acute marijuana use is associated with transient tachycardia and an increase in cardiac output [31]. As such, adolescents and young adults with CHD should regularly be screened for social habits such as tobacco, alcohol, and substance use that further increase their risk for adverse outcomes. A recent study of 328 adolescents and young adults aged 16–20 years suggested that both recent (within the last 30 days) and lifetime substance use of tobacco, alcohol, marijuana, and other illicit drugs among CHD patients was either comparable or lower than healthier peers of the same age [32]. Reported use among subjects with CHD was still noteworthy, with 54% of those aged 19–20 years and 28% of those aged 16–18 years reporting significant use during the previous 30 days. A recent survey of 1496 adults with CHD as compared with 6810 unaffected adults demonstrated comparable rates of alcohol use between the two groups, but lower rates of smoking and illicit drug use among those with CHD [33]. Among subjects with CHD, 81% reported current alcohol use, 13% reported lifetime cannabis use, 6% reported lifetime use of other illicit drugs, and 13% were identified as current smokers, with no significant difference in use when comparing individuals with mild, moderate, or severe heart defects. These rates highlight the importance of screening for health risk behaviors among adolescents and young adults with CHD given their increased risk for adverse cardiovascular outcomes. Sexual health Females with CHD are at increased risk for cardiovascular complications during pregnancy, most commonly congestive heart failure, arrhythmia, and thromboembolic events [29]. Further, women with CHD may be at an increased risk for thromboembolic complications associated with combined estrogen and progestin contraceptive therapy, and recommendations exist to guide individual contraceptive choices based on the specific heart defect that is present [34]. It is therefore imperative that adolescents and young adults with CHD receive counseling prior to sexual debut about their individual risk of pregnancy as well as education about condition-specific contraceptive options. A recent analysis of data from the National Health and Nutrition Examination Survey evaluated the sexual practices of 29 patients with CHD and 1057 control subjects without CHD among individuals aged Volume 27 Number 1 February 2015
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Health risk behaviors and special health care needs Pilapil and DeLaet
20 years and older. As compared with control subjects, individuals with CHD reported no significant difference in age at first sexual intercourse (15.9 9.4 years among those with CHD vs. 16.2 4.7 years among those without CHD; P ¼ 0.386), number of lifetime sexual partners, or reported condom use [35 ]. These data underscore the importance of providing contraceptive education to adolescents with CHD prior to coitarche. However, results from two recent studies reveal that such counseling and education are not being routinely provided [36 ,37]. A cross-sectional survey of 83 women 19 years or older with CHD followed in an adult CHD clinic were surveyed to assess their receipt of reproductive and contraceptive counseling as well use of high-risk or contraindicated contraceptive methods [36 ]. This survey showed that 54% of participants reported that a health-care professional had never discussed with them condition-specific options for contraception, and of those who did report receiving counseling, only 47% received such counseling prior to first engagement in sexual intercourse. A history of using a method contraindicated given their underlying heart condition was reported in 12% of those surveyed. Another study of 536 adult women with CHD demonstrated similar results, with 20% of women actively using contraceptive methods that were contraindicated for their specific cardiac condition, 43% reporting not having been counseled about contraception, and 48% reporting not having been counseled about pregnancy-related risks [37]. These findings suggest that pediatric providers must develop strategies to assure that this critical component of health risk behavior counseling is being offered to adolescents and young adults with CHD seen in their practices. &
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Intellectual disability Intellectual disability, defined as a condition of arrested or incomplete development of the mind characterized by impairment of skills and overall intelligence in areas such as cognition, language, and motor and social abilities, has an overall global prevalence rate of 1–3% [38,39]. Individuals with intellectual disability have been demonstrated to have a decreased life expectancy compared with the general population [40]. Given the increased risk for premature death among this population, pediatric providers must be equipped to provide comprehensive disease management, including routine health risk behavior assessment, to adolescents and young adults with intellectual disability. Substance use An analysis of the deaths of 247 people with intellectual disability in the United Kingdom revealed
that the median age of death as compared with the general population was 13 years younger among males and 20 years younger among females [40]. Though the median age of death decreased as the severity of intellectual disability increased, a premature age of death was noted even among those with mild intellectual disability. These findings underscore the importance of reducing the impact of modifiable health risk behaviors among adolescents and young adults with intellectual disability. A recent survey of more than 46 000 households with young children in the United Kingdom sought to estimate the prevalence of parental health behaviors among parents with and without intellectual disability [41 ]. Among both single-parent and twoparent households, parents with intellectual disability were significantly more likely to report smoking, abuse of drugs, and abuse of alcohol than those without intellectual disability. Similarly, a recent analysis of cross-sectional data in the United Kingdom of more than 50 000 individuals aged 16 years and older, 520 of whom had self-reported intellectual disability, demonstrated significantly greater self-reported current smoking [adjusted odds ratio (OR) 2.03, 95% confidence interval (CI) 1.59–2.58] and self-reported daily alcohol use (adjusted OR 2.01, 95% CI 1.29–3.13) among individuals with self-reported intellectual disability than those without [42 ]. These data reveal that adolescents and adults with intellectual disability may be more likely to engage in health risk behaviors than the general population. Pediatric providers should routinely screen in a developmentally appropriate manner for substance use among this patient population. &
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Sexual health Individuals with intellectual disability pose unique challenges when considering sexuality and sexual health. Providers must address the issue of capacity to consent to sexual activity with individuals with intellectual disability and their families [43]. Additionally, it has been shown that individuals with intellectual disability are at increased risk for sexual abuse [44]. Lastly, discussions of sexuality and sexual health must be adapted to the developmental level of the individual with intellectual disability. However, data show that issues of sexual health among this population are not being adequately addressed. A recent study formally assessed sexual knowledge among 30 adolescents with mild intellectual disability and 30 nondisabled adolescents 16–21 years of age [45 ]. Nondisabled adolescents scored significantly higher than those with intellectual disability on sexual knowledge subscales of physical changes of puberty, reproduction, contraception, and sexually transmitted
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diseases. Although more than half (n ¼ 16) of nondisabled adolescents reported receiving information on sexual health from a doctor, only three adolescents with intellectual disability reported receiving such education. These findings are consistent with previous studies demonstrating gaps in sexual knowledge and lack of sexual education among adolescents with intellectual disability [46,47]. Pediatric providers should examine current practices and institute necessary changes to assure that adolescents and young adults with intellectual disability receive appropriate sexual health counseling and care.
CONCLUSION Adolescents and young adults with SHCN are at risk for adverse health outcomes that may be worsened by engaging in health risk behaviors. Pediatric providers have an opportunity to reduce substance use, sexual risk-taking, and smoking in this population. Psychosocial screening tools such as the Home, Education/employment, peer group Activities, Drugs, Sexuality, and Suicide/Depression (HEADSS) assessment are part of routine adolescent care and should be similarly applied in a developmentally appropriate manner to this population, regardless of their other comorbidities. Potential barriers to appropriate screening and counseling include time limitations, strong parental involvement in medical care, and the provider’s comfort level. Pediatricians can encourage healthy lifestyle choices by assessing the patient’s knowledge of their own health risks, asking about their engagement in risky behaviors, and advising them on ways to refrain from such behaviors. Pediatricians should enlist the help of other staff members including counselors, social workers, and peer educators in reducing health risk behaviors with the hope of improving overall health in this vulnerable population. Acknowledgements None. Financial support and sponsorship None. Conflicts of interest None.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. McPherson M, Arango P, Fox H, et al. A new definition of children with special healthcare needs. Pediatrics 1998; 102 (1 Pt 1):137–140.
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2. American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP), American College of Physicians-American Society of Internal Medicine, (ACP-ASIM). A consensus statement on healthcare transitions for young adults with special healthcare, needs. Pediatrics 2002; 110 (6 Pt 2): 1304–1306. 3. Surı´s JC, Michaud PA, Akre C, Sawyer SM. Health risk behaviors in adolescents with chronic conditions. Pediatrics 2008; 122:e1113–e1118. 4. Choquet M, Du Pasquier Fediaevsky L, Manfredi R. Sexual behavior among adolescents reporting chronic conditions: a French national survey. J Adolesc Health 1997; 20:62–67. 5. Valencia LS, Cromer BA. Sexual activity and other high-risk behaviors in adolescents with chronic illness: a review. J Pediatr Adolesc Gynecol 2000; 13:53–64. 6. Suris JC, Parera N. Sex drugs and chronic illness: health behaviours among chronically ill youth. Eur J Public Health 2005; 15:484–488. 7. Miauton L, Narring F, Michaud PA. Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland. Eur J Pediatr 2003; 162:682–689. 8. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet 2007; 369:1481– 1489. 9. Mariotto AB, Rowland JH, Yabroff KR, et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomarkers Prev 2009; 18:1033–1040. 10. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 2006; 355:1572–1582. 11. Klosky JL, Howell CR, Li Z, et al. Risky health behavior among adolescents in the childhood cancer survivor study cohort. J Pediatr Psychol 2012; 37:634– 646. 12. Tai E, Buchanan N, Townsend J, et al. Health status of adolescent and young adult cancer survivors. Cancer 2012; 118:4884–4891. 13. Ford JS, Puleo E, Sprunck-Harrild K, et al. Perceptions of risk among child& hood and young adult cancer survivors who smoke. Support Care Cancer 2014; 22:2207–2217. This multicenter telephone survey of more than 300 cancer survivors between 18 and 55 years old showed that a significant proportion did not perceive an increased risk of chronic health problems owing to smoking. 14. Emmons KM, Sprunck-Harrild K, Puleo E, de Moor J. Provider advice about & smoking cessation and pharmacotherapy among cancer survivors who smoke: practice guidelines are not translating. Transl Behav Med 2013; 3:211–217. This survey of more than 300 CCSs revealed that a significant proportion of actively smoking survivors did not receive appropriate smoking cessation counseling. 15. Emmons KM, Puleo E, Sprunck-Harrild K, et al. Partnership for health-2, a web-based versus print smoking cessation intervention for childhood and young adult cancer survivors: randomized comparative effectiveness study. J Med Internet Res 2013; 15:e218. 16. 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Ojha RP, Tota JE, Offutt-Powell TN, et al. Human papillomavirus-associated & subsequent malignancies among long-term survivors of pediatric and young adult cancers. PLoS One 2013; 8:e70349. This study of longitudinal data from more than 60 000 long-term survivors of pediatric and young adult cancers showed increased rates of HPV-associated malignancies in this population. 22. Klosky JL, Russell KM, Canavera KE, et al. Risk factors for noninitiation of the & human papillomavirus vaccine among adolescent survivors of childhood cancer. Cancer Prev Res (Phila) 2013; 6:1101–1110. This cross-sectional survey of mothers of female childhood cancer survivors demonstrated low rates of initiation and completion of HPV vaccination series in this population. 23. Gianinazzi ME, Rueegg CS, Wengenroth L, et al. Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology 2013; 22:2051–2058. 24. Gianinazzi ME, Rueegg CS, von der Weid NX, et al. 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Health risk behaviors and special health care needs Pilapil and DeLaet 26. Wren C, Irving CA, Griffiths JA, et al. Mortality in infants with cardiovascular malformations. Eur J Pediatr 2012; 171:281–287. 27. Williams RG, Pearson GD, Barst RJ, et al. Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol 2006; 47:701–707. 28. Oechslin EN, Harrison DA, Connelly MS, et al. Mode of death in adults with congenital heart disease. Am J Cardiol 2000; 86:1111–1116. 29. Rao S, Ginns JN. Adult congenital heart disease and pregnancy. Semin Perinatol 2014; 38:260–272. 30. Nieminen HP, Jokinen EV, Sairanen HI. Causes of late deaths after pediatric cardiac surgery: a population-based study. J Am Coll Cardiol 2007; 50:1263–1271. 31. Ghuran A, Nolan J. Recreational drug misuse: issues for the cardiologist. Heart 2000; 83:627–633. 32. Reid GJ, Webb GD, McCrindle BW, et al. Health behaviors among adolescents and young adults with congenital heart disease. Congenit Heart Dis 2008; 3:16–25. 33. Zomer AC, Vaartjes I, Uiterwaal CS, et al. Social burden and lifestyle in adults with congenital heart disease. Am J Cardiol 2012; 109:1657–1663. 34. Warnes CA, Williams RG, Bashore TM, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons. J Am Coll Cardiol 2008; 52:e143–e263. 35. Loomba RS, Aggarwal S, Pelech AN. Addressing sexual health in congenital & heart disease: when being the same isn’t the same. Congenit Heart Dis 2014; doi: 10.1111/chd.12168. [Epub ahead of print] This analysis of National Health and Nutrition Examination Survey data among adults 20 years and older revealed no difference between individuals with and without CHD in age of first sexual intercourse, number of lifetime sexual partners, and condom use. 36. Hinze A, Kutty S, Sayles H, et al. Reproductive and contraceptive counseling & received by adult women with congenital heart disease: a risk-based analysis. Congenit Heart Dis 2013; 8:20–31. This cross-sectional survey of 83 women 19 years or older with CHD demonstrated low levels of condition-specific counseling about contraception and significant use of contraindicated contraception methods.
37. Vigl M, Kaemmerer M, Seifert-Klauss V, et al. Contraception in women with congenital heart disease. Am J Cardiol 2010; 106:1317–1321. 38. World Health Organization. The World Health Report 2001 – Mental Health: New Understanding, New Hope. Geneva: World Health Organization; 2007. http://www.who.int/whr/2001/en/whr01_en.pdf. [Accessed 28 August 2014] 39. Maulik PK, Mascarenhas MN, Mathers CD, et al. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil 2011; 32:419–436. 40. Heslop P, Blair PS, Fleming P, et al. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014; 383:889–895. 41. Emerson E, Brigham P. Health behaviours and mental health status of parents & with intellectual disabilities: cross sectional study. Public Health 2013; 127:1111–1116. This survey of more than 46 000 households with young children showed that parents with intellectual disability were significantly more likely to report smoking, abuse of drugs, and abuse of alcohol than those without intellectual disability. 42. Robertson J, Emerson E, Baines S, Hatton C. Obesity and health behaviours & of British adults with self-reported intellectual impairments: cross sectional survey. BMC Public Health 2014; 14:219. This cross-sectional study of more than 50 000 individuals 16 years and older revealed a significantly greater reported current smoking rate and daily alcohol use among individuals with intellectual disability than those without intellectual disability. 43. Eastgate G. Sex, consent and intellectual disability. Aust Fam Physician 2005; 34:163–166. 44. Horner-Johnson W, Drum CE. Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research. Ment Retard Dev Disabil Res Rev 2006; 12:57–69. 45. Jahoda A, Pownall J. Sexual understanding, sources of information and social & networks; the reports of young people with intellectual disabilities and their nondisabled peers. J Intellect Disabil Res 2014; 58:430–441. This study of 30 adolescents with intellectual disability and 30 nondisabled adolescents found that nondisabled adolescents scored higher on sexual knowledge scales and were more likely to receive sexual education from physicians than adolescents with intellectual disability. 46. Isler A, Tas F, Beytut D, Conk Z. Sexuality in adolescents with intellectual disabilities. Sexuality and Disability 2009; 27:27–34. 47. Cheng MM, Udry JR. How much do mentally disabled adolescents know about sex and birth control? Adolesc Fam Health 2003; 3:28–38.
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