Transition to adult care: experiences and expectations of adolescents with a chronic illness.

BACKGROUND: Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult-centred care during the transition process in order guide effective programme design and implementation. METHODS: Qualitative content and thematic analysis of semi-structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1-3 time points over an 18-month study period. RESULTS: Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one-third of participants made the transition to adult-oriented health care. All participants who had transitioned to adult-oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re-establishing relationships and bringing a new team 'up to speed'. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult-oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult-oriented venues prior to transition might aid in the transition process. CONCLUSIONS: Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult-oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.

Improving rheumatologists' screening for alcohol use and sexual activity.

OBJECTIVES: To design, implement, and assess the impact of an office-based intervention designed to improve rheumatologists' identification of risk behaviors, especially alcohol use and sexual activity, among adolescents and young adults with chronic rheumatologic conditions. DESIGNS: Prospective intervention study. SETTING: Midwestern academic pediatric rheumatology practice. PARTICIPANTS: Ten attending rheumatologists and fellows and 178 patients (mean age, 18.1 years; 67% female; 88% white; 69% with juvenile rheumatoid arthritis) seen in the practice during the baseline and intervention years. MAIN OUTCOME MEASURES: Change in the rate of screening for alcohol use and sexual activity from the baseline to the intervention year, and physician perceptions of the intervention. RESULTS: Screening for alcohol use increased from 4.2% (9/208) at baseline to 31.6% (56/177) after the intervention (P<.001). Of those patients undergoing screening at follow-up, 20 (36%) of 56 patients reported any alcohol use and 11 (20%) reported current alcohol use. Of those reporting current use, 7 (64%) were counseled or referred. Methotrexate use increased the likelihood of alcohol screening (43% [33/76] vs 26% 123/871; P = .02). Screening for sexual activity increased from 12.4% (27/ 218) to 36.2% (64/177) (P<.001) from baseline to follow-up. Of 52 females undergoing screening at follow-up, 31 (60%) were sexually active. Eleven (41%) of 27 sexually active females were not using contraception other than condoms (4 were not asked about contraception); 7 (82%) of these were referred for contraceptive counseling. Seven rheumatologists completed in-depth semistructured interviews after the intervention. All reported time as a main barrier to screening. Other barriers included logistical problems, discomfort with the subject area, ambivalence about whether risk behavior screening is the province of pediatric rheumatologists, and perceived lack of applicability to their patients. CONCLUSIONS: Despite knowledge and concern about the interaction of immunosuppressive therapy and risk behaviors, few rheumatologists adequately screen the behavior of their adolescent and young adult patients. Time constraints, organizational issues, and physician beliefs remain barriers to widespread screening.

Preventive services received by adolescents with cystic fibrosis and sickle cell disease.

OBJECTIVE: To determine the proportion of adolescents with cystic fibrosis (CF) or sickle cell disease (SCD) who reported speaking with their physicians about health-promoting and risky behaviors and whether the rate of discussions varied by whether the main physician was a primary care provider or specialist. HYPOTHESIS: Adolescents reporting a primary care provider as their main physician would be more likely to have received risk behavior counseling and other preventive services. DESIGN: Survey. SETTING: Comprehensive CF and SCD centers in 5 North Carolina referral hospitals. PARTICIPANTS: Three hundred twenty-one (74%) of 437 adolescents aged 12 through 19 years (mean age, 15.6 years; 51% male) with CF or SCD identified through center registries. MAIN OUTCOME MEASURES: Sources of health care, main physician, and recall of discussions with physicians regarding sexual issues, substance use, weight or dieting, safety issues, depression, and violence. RESULTS: Adolescents with CF (53%) or SCD (46%) most commonly reported a specialist as their main physician. For those (83%) who saw their main physician in the past year, adolescents with SCD reported counseling rates ranging from 43% for sexuality to 15% for weapon carrying or fighting. For adolescents with CF, rates ranged from 65% for weight and dieting to 30% for sexuality and 6% for weapon carrying or fighting. Adolescents whose main physician was a primary care provider were no more or less likely to report counseling for any topic (all P>.05). CONCLUSIONS: Physicians, regardless of specialty, infrequently discussed common behavioral issues with these adolescents with CF or SCD. A coordinated effort between primary care physicians and specialists may be helpful in delivering optimal preventive services to this population.

Substance use among adolescents with juvenile rheumatoid arthritis.

OBJECTIVE: To determine the prevalence of substance use among adolescents with juvenile rheumatoid arthritis and to assess available opportunities for rheumatologists to identify high risk teens. METHODS: Fifty-two teens (mean age 13.9 years, 86% female) completed questionnaires regarding substance use (alcohol, tobacco, marijuana, and other illicit substances), functional disability, and frequency of health care contacts. RESULTS: Alcohol use was reported by 30.7% of teens, including 23.5% of those for whom methotrexate was prescribed; 15.4% reported tobacco use in the last year, and 13.4% reported other illicit substance use in their lifetime, although most use was experimental. No teen reported marijuana use. The majority reported regular contact with their rheumatologist but only 26.9% were ever interviewed alone. CONCLUSION: Many teens with juvenile rheumatoid arthritis, including those prescribed methotrexate, used substances, especially alcohol. When rheumatologists see adolescents, particularly in situations where methotrexate may be prescribed, a clinical setting conductive to confidentially, physician comfort in asking about sensitive topics such as substance abuse, and referral relationships with skilled adolescent health and substance abuse counseling providers are essential.

Comparison of physical activity in adolescents with cystic fibrosis versus age-matched controls.

The aims of this study were to compare self-reported vigorous physical activity and participation in sports among adolescents with cystic fibrosis (CF) to those of age matched peers from the general population, and to determine which CF patient characteristics are associated with regular physical activity. One hundred and sixteen of 141 (82%) adolescents aged 12-19 years identified through North Carolina CF Care Center registries confidentially completed a self-administered questionnaire (the CDC's Youth Risk Behavior Survey) addressing health-compromising and health-enhancing behaviors, including physical activity. They were age- and gender-matched to adolescents from North Carolina schools who completed the same survey. Adolescents with CF did not differ significantly from their matched peers with regard to participating three or more times a week in activities that "make you sweat or breathe hard" (63% vs. 67%, P = 0.37), physical education class (59% vs. 61%, P = 0.81), or team sports (52% vs. 61%, P = 0.10). For all categories of activity, participation declined among adolescents aged 17 years or older. After adjusting for gender and health status, early (14 years or younger) and middle (15-16 years) adolescents were more likely to participate in all three types of activity than older adolescents with CF. Like their peers in the general population, adolescents aged 17 and older are much less likely to report regular physical activity, or participation in physical education class or in team sports. Healthcare providers should be aware of this decline in activity in late adolescence and should consider efforts to maintain physical activity among older teenagers and young adults.

Using evidence-based techniques to modify anemia screening practice.

Routine screening of adolescents for iron-deficiency anemia is a widespread but unproven practice. Using evidence-based quality improvement techniques, including literature synthesis and presentation of clinic-specific data, my colleagues and I reevaluated a clinic policy of obtaining complete blood counts to screen for anemia in all new adolescent patients. Medical record review revealed clinically unsuspected anemia in 8 (3.5) of 229 patients screened. All cases were mild, and only two patients received iron therapy. These data, coupled with national recommendations, led to a reversal of the clinic's policy requiring screening of all new patients. One year later, complete blood counts were obtained for only 6% of new patients.

Impact of a school-based intervention on access to healthcare for underserved youth.

PURPOSE: To determine whether a multidimensional school-based intervention, which included physical and mental health services, increased adolescents' use of needed medical care and preventive care and decreased emergency room use. METHODS: A total of 2832 seventh- through twelfth-grade students in six public urban intervention schools and 2036 students in six demographically matched comparison schools completed a previously validated survey regarding health status and healthcare utilization in spring 1998 and 1999. Bivariate analyses examined the association between intervention status and Year 1/Year 2 outcomes. The multifaceted intervention included programs such as anger management groups, substance abuse prevention, tutoring, home visits, and enhanced school health services. Stepwise multivariate logistic models tested differences between the intervention and comparison groups across years, controlling for potential confounding variables [gender, age, race/ethnicity, maternal education, grade in school, school district (city or county), health status, and chronic health problems]. The interaction term for Group x Year was used to test the effect of the intervention. Multivariable modeling was also used to determine student factors independently associated with healthcare utilization. RESULTS: Respondents had a median age of 15 years, 56% were female, 51% were white, 42% were black, and 34% reported chronic health problems. In both years, over 45% of students in both groups reported not seeking medical care they believed they needed. The proportion with missed care in the intervention schools did not change, whereas the proportion with missed care in the comparison schools increased. Emergency room use decreased slightly in the intervention schools and increased slightly in the comparison schools between Year 1 and Year 2. There were no major changes in healthcare delivery in this area during the year, demonstrating the volatility of adolescents' perceived access to care. Among the student factors, health status, having a chronic condition, and being in a higher grade were independently associated with students' report of not seeking care they believed they needed. CONCLUSION: These results confirm that many adolescents have unmet healthcare needs. Those with poor health status are most likely to report underutilization and unmet needs. These findings underscore the need for comparison groups when evaluating interventions and suggest the need for better understanding of community level changes in perceived healthcare access and use.

Quality improvement in a school health program. Results of a process evaluation.

A process evaluation of a school health program designed to improve students' health and educational success is presented. The program included a pediatric nurse practitioner and two nurses placed in three high-risk, urban intervention schools. It is a part of a larger multidimensional pilot intervention project (The Children First Plan). Implemented services and the implementation process are described. Key components for a successful implementation included obtaining buy-in, learning the school culture, defining roles, and keeping a sense of humor. Collaborative efforts among the nursing team, other children-first plan providers, and the school staff improved service delivery. Lack of communication was the primary barrier. In addition, differing philosophies among systems (education, social services, health), problems with referral and feedback, and lack of appropriate providers hampered service delivery. Recommendations for continued program improvement and replication projects are provided.

School disconnectedness: identifying adolescents at risk.

OBJECTIVE: School connectedness, or the feeling of closeness to school personnel and the school environment, decreases the likelihood of health risk behaviors during adolescence. The objective of this study was to identify factors differentiating youth who do and do not feel connected to their schools in an effort to target school-based interventions to those at highest health risk. METHODS: The study population consisted of all students attending the 7th through 12th grades of 8 public schools. The students were asked to complete a modified version of the in-school survey designed for the National Longitudinal Study of Adolescent Health (Add Health). The school connectedness score (SCS) was the summation of 5 survey items. Bivariate analyses were used to evaluate the association between SCS and 13 self-reported variables. Stepwise linear regression was conducted to identify the set of factors best predicting connectedness, and logistic regression analysis was performed to identify students with SCS >1 standard deviation below the mean. RESULTS: Of the 3491 students receiving surveys, 1959 (56%) submitted usable surveys. The sample was 47% white and 38% black. Median age was 15. Median grade was 9th. The SCS was normally distributed with a mean of 15.7 and a possible range of 5 to 25. Of the 12 variables associated with connectedness, 7 (gender, race, extracurricular involvement, cigarette use, health status, school nurse visits, and school area) entered the linear regression model. All but gender were significant in the logistic model predicting students with SCS >1 standard deviation below the mean. CONCLUSIONS: In our sample, decreasing school connectedness was associated with 4 potentially modifiable factors: declining health status, increasing school nurse visits, cigarette use, and lack of extracurricular involvement. Black race, female gender, and urban schools were also associated with lower SCS. Further work is needed to better understand the link between these variables and school connectedness. If these associations are found in other populations, school health providers could use these markers to target youth in need of assistance.

Risky behavior in teens with cystic fibrosis or sickle cell disease: a multicenter study.

OBJECTIVE: To determine the prevalence and age of onset of common risky behaviors such as smoking and sexual activity in teens with cystic fibrosis and those with sickle cell disease and to compare their behaviors with those of adolescents in the general population. DESIGN: Survey. SETTING: All five major pediatric tertiary care centers in North Carolina (study participants with sickle cell disease or cystic fibrosis) and North Carolina public schools (comparison population). PARTICIPANTS: Three hundred twenty-one adolescents with cystic fibrosis or sickle cell disease aged 12 to 19 years (mean age, 15.6 years; 49% female). Demographically matched comparison teens for each group were selected from 2760 in-school adolescents (mean age, 16.0 years; 51% female). MAIN OUTCOMES MEASURES: Prevalence of tobacco and marijuana use, alcohol use, sexual intercourse, sexually transmitted diseases, seat belt use, weapon carrying, and age of onset of these behaviors. RESULTS: Chronically ill teens reported significantly less lifetime and current use of tobacco, marijuana, and alcohol; less sexual intercourse; less weapon carrying, less drunk driving, and more seat belt use than their peers. Nonetheless, 21% of the teens with cystic fibrosis and 30% of those with sickle cell disease had smoked; sexual intercourse was reported by 28% and 51%, respectively. Age of onset of these behaviors was frequently older for the chronically ill teens. CONCLUSION: Teens with cystic fibrosis or sickle cell disease took more potentially damaging health risks than might be expected, although the prevalence was lower than reported by their peers. Future longitudinal studies should examine the relationships between chronic illness, physical and psychosocial maturation, and risky behavior. Screening for psychosocial issues, including risky behaviors, should be incorporated into the routine health care of chronically ill teens.