Susan M. Coupey
With the extraordinary technological advances in medicine that have occurred in the last few decades, the prevalence of chronic conditions in adolescents has increased dramatically. Many more children with conditions such as congenital heart disease, renal failure, cystic fibrosis, and even congenital human immunodeficiency virus (HIV) infection, survive into their teens and beyond (Table 82.1). Despite the availability of excellent biomedical treatment for most common chronic diseases, optimal management of illness in adolescents is not limited to biomedical prescription alone. Developmental, psychosocial, and family factors all feature prominently in the ongoing care of adolescents with chronic diseases. Chronic conditions, by definition, have no cure and therefore must be endured and managed on a daily basis. Having such a condition is a continuing source of stress for the adolescent and his or her family and can contribute to maladaptive coping and dysfunction. On the other hand, the experience of successfully managing a chronic illness also may foster accelerated maturation and coping skills in adolescents and their families. Helping adolescents manage the chronic illness well and reach their full developmental potential can be very rewarding for the clinician. This chapter emphasizes developmental and behavioral issues in management of chronically ill or hospitalized adolescents. It is beyond the scope of this book to discuss medical management of all the specific chronic conditions that can affect adolescents. The references at the end of this chapter address a number of the major chronic illnesses in this age-group.
Definition and Prevalence
Stein et al. (1993; 1997) developed a noncategorical, or generic, approach to defining and measuring chronic health conditions in children, rather than using a list of diagnoses. Three definitional concepts provide the framework, all of which must be present for a child or adolescent to be classified as having a chronic health condition:
Applying this definition and using data from the 1994 National Health Interview Survey Disability Supplement for Children aged 0 through 17 years, Stein and Silver (1999) estimated that 10.3 million children (14.8%) had chronic conditions. In 2001, the Maternal and Child Health Bureau of the National Institutes of Health (NIH) conducted the National Survey of Children with Special Health Care Needs
using a different but similar definition of “children with special health care needs,” namely:
“…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
The 2001 survey found that 12.8% of children younger than 18 years or approximately 9.4 million children in the United States had special health care needs. Both sets of analyses found that children with chronic health conditions or special health care needs were disproportionately older and male. The 2001 survey found that among adolescents aged 12 through 17, 15.8% have special health care needs. Asthma and other chronic respiratory tract conditions and musculoskeletal disorders account for most of the physical disabilities. Mental health disorders, including developmental, behavioral, and emotional problems, also are a leading cause of disability in this age-group.
Interaction of Adolescent Development and Chronic Illness
Early adolescence is a period of accelerated physical growth and pubertal development, and in middle and later adolescence, acceleration in cognitive and psychosocial development predominates. The interaction of chronic illness with these different developmental streams is complex and bidirectional; the illness may affect the development and/or the development may affect the illness. For example, some chronic diseases such as cystic fibrosis or sickle cell disease can cause delayed puberty, but for other chronic diseases such as diabetes mellitus, normal puberty can cause exacerbation of the disease. Similarly, disabling chronic conditions that impede peer interaction such as spina bifida can delay psychosocial development; conversely, normal psychosocial development that includes increasing independence from parents with experimentation and risk taking can lead to poor medication adherence and exacerbation of illnesses such as asthma or chronic renal failure.
Specific psychosocial areas, notably achieving independence and family relationships, have been found to be most vulnerable to dysfunction in adolescents with chronic health conditions. Wolman et al. (1994) examined emotional health in adolescents with and without a chronic illness. They found that although adolescents with chronic conditions do less well than adolescents without chronic conditions, the illness is not the most influential factor in emotional well-being. Family connectedness is of fundamental importance for adolescents' emotional well-being. Bennett (1994) reviewed 60 studies of depressive symptoms among children and adolescents with chronic medical problems. Although the findings indicate that children and adolescents with a chronic medical problem are at slightly elevated risk of having depressive symptoms, most were not clinically depressed. Mintzer et al. (2005) looked at post-traumatic stress disorder (PTSD) in >100 adolescents who had an organ transplantation (kidney, liver, or heart) a mean of 7 years previously and found that, although the majority (70%) had no symptoms, 16% met criteria for a diagnosis of PTSD. The type of transplant did not predict PTSD but adolescents with acute onset of organ failure precipitating the need for transplant were more likely to have PTSD than those having transplantations resulting from chronic or congenital conditions. Most studies indicate that the presence of a chronic physical illness, even with its attendant problems and stresses, does not necessarily lead to emotional dysfunction. Adolescents with a chronic condition, who are also disabled, however, are at increased risk for psychosocial and emotional dysfunction.
Another approach put forward by Rutter (1985) and reiterated by Patterson and Blum (1996) is to evaluate the total burden of risk and protective factors borne by each adolescent and to view chronic physical illness as one of several important risk factors for psychosocial and emotional dysfunction. Risk factors other than chronic illness include the following:
Protective factors include the following:
Using this approach, clinicians can target adolescents with multiple risk factors, in addition to the chronic illness, for enhanced intervention to prevent dysfunction.
Specific Developmental Risks
The medical requirements of managing a chronic illness and/or the perception of vulnerability of the ill adolescent can impede the movement toward independence that usually occurs during early and middle adolescence. Because chronic illness may prolong dependence on parents and others, including physicians, the adolescent may become compliant and child-like or noncompliant and rebellious.
As stressed in earlier chapters, adolescents are highly concerned with and are self-conscious about their developing bodies. Delayed puberty or visible markers of the illness may interfere with the development of a healthy body image. This abnormal body image may lead to the following:
Chronic illness may limit teenagers' activities, not only because of physical, mental, or sensory disabilities but also even without overt disability, because of illness-related fatigue, frequent medical appointments,
and hospitalizations. Chronically ill adolescents may be rejected by peers or have fantasies of such rejection. These problems may lead to fear of peer involvement and social isolation.
The adolescent with a chronic illness often has difficulties consolidating a mature identity. Concerns about future vocation, financial resources, separation from parents, marriage, and reproduction may all lead to identity problems.
Age at Onset
The stage of development during which the chronic illness appears may have considerable bearing on the psychological impact of the illness on the adolescent.
Nature of the Illness
Perrin et al. (1993) list 12 dimensions, other than age at onset, for describing chronic illness that potentially may have an impact on the adolescent's adjustment:
For example, a highly visible disease such as psoriasis may cause more emotional disruption than a life-threatening malignancy such as Hodgkin disease. However, as is true for all of these dimensions, there is a complex relationship between visible deformities and adjustment. Sheerin et al. (1995) evaluated psychosocial adjustment in children with facial port-wine stains compared with adjustment in children with prominent ears. The children with disfiguring facial birthmarks were found to be as well as or better adjusted than nondisfigured peers, whereas those with prominent ears were less well adjusted. To explain this counterintuitive finding, the authors suggest that having a clearly abnormal disfigurement, such as a port-wine stain, elicits uniformity of both opinion and support from family, whereas having a “deformity” such as prominent ears, which is merely an exaggeration of normal, is not as likely to elicit support and may explain the poorer mental health in that marginally disfigured group.
An exacerbating and remitting course of illness with the accompanying uncertainty and lack of control over when the symptoms will strike, seems to be more likely to be associated with emotional problems. In reviewing studies among children and adolescents with chronic medical problems, Bennett (1994) found that certain disorders with these characteristics (i.e., asthma, recurrent abdominal pain, and sickle cell anemia) are associated with a greater risk for depression than other disorders that are more predictable (i.e., cancer, cystic fibrosis, and diabetes mellitus). Ireys et al. (1994) studied young adults (mean age, 21.9 years) with chronic illness and found that hearing and speech problems, unpredictability of symptoms, and restricted activity days were illness characteristics that had significant adverse effects on mental health status. Diseases that interfere with cognition, sensory function, or communication are particularly likely to be associated with poor adjustment. Howe et al. (1993) found that adolescents with brain-based conditions had more behavioral problems, less autonomous functioning, and poorer school achievement than those without brain dysfunction.
Coping with Chronic Illness
To cope with difficulties and frustrations of chronic illness, the adolescent usually adopts one or more of the following coping mechanisms:
behaviors such as missed appointments and forgotten medications.
Over time, the adolescent with a chronic illness or disability likely uses many of the listed coping mechanisms, often using different mechanisms to cope with different situations. Most adolescents who come from psychologically healthy and supportive families can cope amazingly well with a multitude of stressors and are even able to use these situations as emotional growth experiences. It is not uncommon to observe regressed behavior in an adolescent during a period of acute distress, with a rapid regaining of maturational status almost immediately afterward (e.g., when a bone marrow aspiration needle is removed).
With maturation and experience in dealing with chronic illness and its treatment, many adolescents are able to use cognitive reframing of situations to render them less threatening and stressful. Such adolescents also develop an array of coping strategies that have worked for them and learn to reuse those successful strategies instead of continuing to try unsuccessful ones. Exposure to multiple stresses of a similar nature permits stress inoculation and the ability to respond more rapidly and often more appropriately to familiar challenges.
For those adolescents who cannot consistently meet the challenges of chronic illness, breakdown of coping may be manifested behaviorally by poor adherence to treatment recommendations, increased risk-taking behaviors, or overall withdrawal from developmental tasks as a manifestation of depression.
Risk taking, particularly in the areas of sexuality and substance use, contributes substantially to morbidity in healthy adolescents. When this behavior interacts with chronic illness, however, negative health consequences are often exacerbated. It is ironic that risk taking among chronically ill teenagers is probably directly related to improved management, which most often results in normal or near-normal growth, pubertal development, and fertility; better nutritional status; normal energy levels; and age-appropriate opportunities for social interaction that can, and often do, include risk-taking behaviors.
For adolescents with a chronic illness, the health risks of sexual activity may be exacerbated by the illness itself, the medications used to treat it, or by a maladaptive emotional response to illness. However, studies show that many adolescents with chronic illness and disability are sexually active and most have concerns about their sexual attractiveness, normalcy of their reproductive system and sexual response, fertility, safety of contraception use, and genetic aspects of their disease.
Suris et al. (1996) conducted a statewide survey of Minnesota high school students and showed that for both boys and girls, there was no difference in age at first intercourse between those with chronic illness and those without, and no effect of visibility of illness on age at first intercourse. Cheng and Udry (2002) in an analysis of physically disabled adolescents (mainly with musculoskeletal disorders) interviewed in the National Longitudinal Study of Adolescent Health found that by age 16, physically disabled teens were at least as sexually active as their nondisabled peers with 39% and 42% of severely disabled boys and girls, respectively, reporting sexual intercourse versus 37% and 34% of nondisabled boys and girls, respectively. In a study of inner-city adolescents with various chronic diseases (e.g., asthma, diabetes mellitus, cancer, sickle cell disease, and others) and their healthy friends aged 14 through 17 years, Alderman and Lauby (1995) found that approximately one third of both the chronically ill group and the healthy group were sexually active, with a mean age at first intercourse in the 13th year. However, these investigators also found that the interaction between gender and sexual debut was significantly different; boys without chronic illness initiated intercourse at a younger age (12.9 years) than boys with illness (13.4 years), and the reverse was true for girls, those with chronic illness initiated intercourse at a younger age (13.8 years) than their healthy friends (15.3 years). Britto et al. (1998) surveyed adolescents with cystic fibrosis and sickle cell disease from five pediatric tertiary care centers in North Carolina and compared their sexual behavior with that of controls matched for age, race, and gender. Fewer teens with cystic fibrosis (28%) and sickle cell disease (51%) than matched controls (46% and 76%, respectively) reported sexual activity. Also, the age at first intercourse for girls was older in those with chronic illness compared with matched controls, 15.7 versus 14.6 years and 14.8 versus 13.9 years for those with cystic fibrosis and sickle cell disease, respectively. The same was true for boys, only the ages at first intercourse were approximately 1 year younger in all groups.
As the study by Britto et al. shows, sexual debut may be delayed in adolescents with illnesses that delay puberty such as cystic fibrosis and sickle cell disease. Onset of sexual activity may also be delayed for adolescents with mobility limitations and brain-based conditions that result in fewer opportunities for peer interaction. Sexual assault is also a salient issue, particularly for cognitively impaired adolescent girls who are uniquely vulnerable to exploitation.
Substance use by adolescents with chronic illness can contribute significantly to morbidity and mortality. Alcohol, illicit drugs, or over-the-counter herbal preparations may interact with prescribed medications to cause deleterious effects. Certain specific chronic conditions, notably heart disease, put affected adolescents at particular risk of death from even one-time use of stimulants such as cocaine, amphetamines, or “Ecstasy” (methylenedioxymethamphetamine [MDMA]).
Prevalence of Substance Use
Westbrook et al. (1991) compared substance use in three different groups of adolescents, aged 13 to 19 years. The groups included 34 patients with idiopathic epilepsy, 32 with various chronic diseases other than epilepsy, and 50 with no chronic illness. Fewer adolescents with epilepsy were daily smokers (9%) than adolescents who had other chronic diseases (19%) or were healthy (30%). Approximately 15% of the teens in each group reported drinking alcohol once a week or more, and 20% in each group reported that they used marijuana, with less than half using it once a week or more. The study by Britto et al. (1998) in North Carolina also found that fewer teens with cystic fibrosis versus matched controls smoked regularly (2.6% versus 29.6%), were binge drinkers (18.0% versus 35.3%), or tried marijuana (9.7% versus 29.4%), respectively. Tyc et al. (2006) reviewed smoking rates in children and adolescents with chronic illness. They reported that some of these adolescents had smoking rates at least comparable to those of their healthy peers. The article also reviewed suggested interventions for smoking cessation in youth with a chronic illness. Although the proportion of adolescents with chronic illness using substances may be less than that of their healthy peers, the absolute numbers are still quite high, and the risk for health complications are greater. Screening by history for substance use, and anticipatory guidance and counseling regarding specific substances and their effect on the adolescent's illness are mandatory.
Management of Chronic Illness in the Adolescent
Optimal care of the adolescent's medical condition is of primary importance. However, high-quality treatment often
cannot be achieved without consideration and exploration of the adolescent's mental health, developmental progress, and family relationships. Simply prescribing treatment is not enough. The adolescent must cooperate with the health care team, believe that adhering to a complex regimen is better than the alternative, and have family support and assistance in carrying out the treatment plan. Helpful principles for management include the following:
comprehensive ambulatory service decreased number of inpatient hospitalizations, length of stay, hospital costs, and readmissions for chronically ill children.
Health Care Transition from Pediatric to Adult Services for Young Adults with Chronic Illness
Approximately half a million youth with special health care needs will turn 18 each year in the United States and most will need to be transitioned into the adult health care system. An appropriately timed transition to adult-oriented health care allows youth to optimize their independence and to more successfully assume adult roles and functioning. Indeed, the Healthy People 2010 initiative has established a goal that “All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.” A joint consensus statement issued in 2002 by leading pediatric and adult health care societies recommends that a written health care transition plan for adolescents with special health care needs be created by age 14 and that affordable, continuous health insurance coverage be ensured throughout adolescence and adulthood. However, there are several barriers to effecting a successful health care transition for chronically ill youth and their families. Such barriers include the following:
The Society for Adolescent Medicine in its 2003 position paper outlined several principles of successful transition services. Such services should have the following features:
Scal and Ireland (2005) evaluated the adequacy of transition services in an analysis of parent reports from the 2001 National Survey of Children with Special Health Care Needs. These investigators found that overall, 50% of youth and parents had discussed transition issues with the adolescent's doctor but only one in six (16%) had developed a plan. The strongest predictors of the adequacy of health care transition services were a high-quality parent–provider interaction, a greater number of needed services, female gender, and older age. This study provides us with a first look at how we are doing as a nation in providing optimal care for our adolescents and young adults with chronic illness and indicates that we have much room left for improvement.
http://www.pacer.org/links/national/disability.htm. PACER Center (Parent Advocacy Coalition for Educational Rights): This site has up-to-date links and addresses for more than 160 specific disability resources including organizations and associations such as Autism Society of America, National Fragile X Foundation, American Diabetes Association, Cystic Fibrosis Foundation, March of Dimes Birth Defects Foundation, Candlelighters Childhood Cancer Foundation, and many others. Resources are listed for 14 different categories of disability including: Attention Deficit Disorder, Autism Spectrum Disorders, Cognitive and Developmental Disabilities, Deaf Blind, Deaf and Hard of Hearing, Emotional and Behavioral Disorders, Genetic Disorders, Health Impairments, Learning Disabilities, Neurological Disorders, Physical Disabilities, Speech or Language Impairments, Traumatic Brain Injury, and Visually Impaired.
http://www.nichcy.org. National Dissemination Center for Children with Disabilities. Information on disabilities in children and youth, special education, and research.
http://www.depts.washington.edu/healthtr/. Adolescent Health Transition Project at the Center on Human Development and Disability at the University of Washington, Seattle. This site contains extensive high quality information for health care providers and educators, parents and families, and teens and young adults.
http://www.hrtw.org. Healthy and Ready to Work National Center. This Center is part of the Division of Services for Children with Special Health Care Needs of the MCHB. It is filled with information for professionals, parents, and youth.
http://www.youngwomenshealth.org. This site is sponsored by the Children's Hospital Boston. There is excellent information for girls, parents, and professionals on contraception and sexual health as well as on chronic gynecologic conditions including reproductive consequences for cancer survivors, poly cystic ovary syndrome, endometriosis, congenital anomalies of the female genital tract, and ovarian failure.
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Hoare P, Mann H. Self-esteem and behavioral adjustment in children with epilepsy and children with diabetes. J Psychosom Res 1994;38:859.
Raty LKA, Larsson BMW, Soderfeldt BA, et al. Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. J Adolesc Health 2003;33:252.
Westbrook LE, Silver EJ, Coupey SM, et al. Social characteristics of adolescents with idiopathic epilepsy: a comparison to chronically ill and non-chronically ill peers. J Epilepsy1991; 4:87.
Cetta F, Graham LC, Lichtenberg RC. Piercing and tattooing in patients with congenital heart disease: patient and physician perspectives. J Adolesc Health 1999;24:160.
Doroshow RW. The adolescent with simple or corrected congenital heart disease. Adolesc Med 2001;12:1.
Gillum RF. Epidemiology of congenital heart disease in the United States. Am Heart J 1994;127:919.
Mendelson MA. Gynecologic and obstetric issues in the adolescent with heart disease. Adolesc Med 2001;12:163.
Inflammatory Bowel Disease
Engstrom I. Inflammatory bowel disease in children and adolescents: mental health and family functioning. J Pediatr Gastroenterol Nutr 1999;28:S28.
Griffiths AM. Inflammatory bowel disease. Adolesc Med 1995;6:351.
Lindberg E, Lindquist B, Holmquist L, et al. Inflammatory bowel disease in children and adolescents in Sweden, 1984–1995. J Pediatr Gastroenterol Nutr 2000;30:259.
Cameron JS. Lupus nephritis in childhood and adolescence. Pediatr Nephrol 1994;8:230.
Furth SL, Hwang W, Yang C, et al. Relation between pediatric experience and treatment recommendations for children and adolescents with kidney failure. JAMA 2001;285:1027.
Hogg RJ, Furth S, Lemley KV, et al. National kidney foundation's kidney disease outcomes quality initiative clinical practice guidelines for chronic kidney disease in children and adolescents: evaluation, classification, and stratification. Pediatrics 2003;111:1416.
Manifica S, Dazord A, Cochat P, et al. Quality of life of children and adolescents after kidney or liver transplantation: child, parents and caregiver's point of view. Pediatr Transplant 2003;7:228.
Watson AR, Shooter M. Transitioning adolescents from pediatric to adult dialysis units. Adv Perit Dial 1996;12:176.
Adam V, St-Pierre Y, Fautrel B, et al. What is the impact of adolescent arthritis and rheumatism? Evidence from a national sample of Canadians. J Rheumatol 2005;32:354.
Bentas W, Karch H, Huppertz HI. Lyme arthritis in children and adolescents: outcome 12 months after initiation of antibiotic therapy. J Rheumatol 2000;27:2025.
Britto MT, Rosenthal SL, Taylor J, et al. Improving rheumatologists' screening for alcohol use and sexual activity. Arch Pediatr Adolesc Med 2000;154:478.
Cuneo KM, Schiaffino KM. Adolescent self-perceptions of adjustment to childhood arthritis: the influence of disease activity, family resources, and parent adjustment. J Adolesc Health 2002;31:363.
Hollister JR. Medical treatment of adolescents with rheumatic disease. Adolesc Med 1998;9:163.
Sathananthan R, David J. The adolescent with rheumatic disease. Arch Dis Child 1997;77:355.
Shaller J. Diagnosis and management of rheumatic diseases in adolescence. Adolesc Med 1998;9:1.
Silva CA, Hallak J, Pasqualotto FF, et al. Gonadal function in male adolescents and young males with juvenile onset systemic lupus erythematosus. J Rheumatol 2002;29:2000.
White PH. Psychosocial aspects of rheumatic disease in childhood and adolescence. Adolesc Med 1998;9:171.
White PH. Transition to adulthood. Curr Opin Rheumatol 1999; 11:408.
Sickle Cell Anemia
Athale UH, Chintu C. The effect of sickle cell anaemia on adolescents and their growth and development: lessons from the sickle cell anaemia clinic. J Trop Pediatr 1994;40:246.
Britto MT, Garrett JM, Dugliss MA, et al. Preventive services received by adolescents with cystic fibrosis and sickle cell disease. Arch Pediatr Adolesc Med 1999;153:27.
Kell RS, Kliewer W, Erickson MT. Psychological adjustment of adolescents with sickle cell disease: relations with demographic, medical, and family competence variables. J Pediatr Psychol 1998;23:301.
Lemanek KL, Steiner SM, Grossman NJ. Too little, too late: primary vs. secondary interventions for adolescents with sickle cell disease. Adolesc Med 1999;10:385.
Mantadakis E, Cavender D, Joe RN. Prevalence of priapism in children and adolescents with sickle cell anemia. J Pediatr Hem Oncol 1999;21:518.
Ohene-Frempong K, Weiner SJ, Sleeper LA, et al. Cerebrovascular accidents in sickle cell disease: rates and risk factors. Blood 1998;91:288.
Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease–life expectancy and risk factors for early death. N Engl J Med 1994;330:1639.
Yang YM, Cepeda M, Price C, et al. Depression in children and adolescents with sickle-cell disease. Arch Pediatr Adolesc Med 1994;148:457.
Appleton PL, Minchom PE, Ellis NC, et al. The self-concept of young people with spina bifida: a population-based study. Dev Med Child Neurol 1994;36:198.
Ammerman RT, Kane VR, Slomka GT, et al. Psychiatric symptomatology and family functioning in children and adolescents with spina bifida. J Clin Psychol Med Settings 1998; 5:449.
Blum RW, Resnick M, Nelson R, et al. Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics 1991;88:280.
Coakley RM, Holmbeck GN, Friedman D, et al. A longitudinal study of pubertal timing, parent-child conflict, and cohesion in families of young adolescents with spina bifida. J Pediatr Psychol 2002;27:461.
Gross SM, Ireys HT, Kinsman SL. Young women with physical disabilities: risk factors for symptoms of eating disorders. J Dev Behav Pediatr 2000;21:87.
McDonnell GV, McCann JP. Issues of medical management in adults with spina bifida. Childs Nerv Syst 2000;16:222.
Sandler AD, Worley G, Leroy EC, et al. Sexual knowledge and experience among young men with spina bifida. Eur J Pediatr Surg 1994;4(Suppl 1):36.
Silber TJ, Sheer C. Eating disorders in adolescent girls with spina bifida. J Adolescent Health 1996;18:139.
Wolman C, Basco DE. Factors influencing self-esteem and self-consciousness in adolescents with spina bifida. J Adolesc Health 1994;15:543.