Supported in part by philanthropic funds (Wolpow Family Fund and Rubin Family Fund).
When independent healthcare behaviors develop in adolescents with inflammatory bowel disease†
Article first published online: 28 FEB 2012
Copyright © 2012 Crohn's & Colitis Foundation of America, Inc.
Inflammatory Bowel Diseases
Volume 18, Issue 12, pages 2310–2314, December 2012
How to Cite
van Groningen, J., Ziniel, S., Arnold, J. and Fishman, L. N. (2012), When independent healthcare behaviors develop in adolescents with inflammatory bowel disease. Inflamm Bowel Dis, 18: 2310–2314. doi: 10.1002/ibd.22937
- Issue published online: 15 NOV 2012
- Article first published online: 28 FEB 2012
- Manuscript Accepted: 11 FEB 2012
- Manuscript Received: 27 JAN 2012
- transition to adulthood;
Patients with chronic health needs are expected to gradually assume responsibility for health maintenance behavior as they move toward adulthood. We sought to evaluate the influence of factors such as age, duration of disease, and gender by examining the self-reported health behaviors of adolescents with inflammatory bowel disease (IBD).
Confidential voluntary surveys were administered to all IBD outpatients over age 10 during a 4-month period. Questions addressed responsibility for health behaviors such as medication, provider visits, and communication. Likert scales measured the degree of independence: 1 (my parents only) through 3 (parents share equally with me) to 5 (I do it myself). Patient participation during doctor visits was also assessed.
Of 358 patients approached, 294 (82%) returned completed surveys. Respondents were 51% male and 69% had Crohn's disease. Patients took increasingly active roles, but by ages 19–21 only 45% ordered medication refills, and 50% picked up medication from pharmacy. Only 35% of 19–21-year-olds scheduled appointments and 30% contacted providers between visits if problems arose. Most patients could answer provider questions (55% at age 16–18) but fewer asked questions of the provider (15% at the same age). Males were less likely to order their own prescription refills (P = 0.017) or prepare questions (P = 0.009). Duration of disease did not change skill acquisition.
Adolescents develop independence in managing their IBD slowly and many patients ≥18 years are still assisted by parents. Focus on specific skill acquisition may help patients with self-management skills expected in adult healthcare. (Inflamm Bowel Dis 2012;)
Many diseases acquired or diagnosed in childhood are chronic, with high morbidity and low mortality, such as inflammatory bowel disease (IBD). Pediatric patients will continue to need medical care as they mature into adulthood. Ideally, pediatric providers, aware of developmentally appropriate care, must help coach patients to gradually assume increasing responsibility for their own healthcare behaviors.1, 2 Transition often culminates in transfer to adult healthcare providers, but for some medical conditions this final step can be particularly challenging. Transfer is not synonymous with transition.
The medical care of adults places an emphasis on patient autonomy and requires more participation from the patient.3 Patients are expected to know the basic nature of their diagnosis, the names and doses of medications, and the names of the medical providers. Skills that are required of adult patients include communication, decision-making, self-care, assertiveness, self-determination, and self-advocacy. Tasks that reflect these skills include obtaining medication from the pharmacy, scheduling appointments, contacting the providers between visits, and asking questions during the visit. During adolescence, patients should develop such skills and knowledge, with help from parents as well as their pediatricians.4–7 Timelines for this process, based on development stages of healthy children, have been published. However, no consensus has been reached as to an ideal timeline for children with chronic disease.8
The primary aim of this study was to identify the current self-management skills of IBD patients in adolescence and young adult years. We were also interested in whether factors such as gender, diagnosis, or duration of disease affected the timing of skill acquisition.
MATERIALS AND METHODS
All patients age 10 and older in the database of the Center for Inflammatory Bowel Disease at Children's Hospital Boston were reviewed. Patients were excluded if they had not been seen for 3 years or were known to have moved or transferred to other healthcare providers.
Surveys were distributed in the outpatient Gastroenterology Clinic and outpatient infusions centers of Children's Hospital Boston to 358 consecutive eligible patients over a period of 4 months. The survey was voluntary and confidential, identified only by coded numbers, and administered only in English. The survey was returned, whether filled out or not, in a sealed envelope to the study nurse so that providers would be unaware of patient or parent answers. Patients were asked to fill out the survey before seeing the provider and encouraged to answer independently. If they needed parental assistance for any question, they indicated this by checking a box. Since parental consent was required for patients under the age of 18, parents had a separate confidential survey, which they could choose to fill out or simply check a box giving permission to use the child's answers.
The survey, designed with a survey methodologist and previously pilot-tested,9 questioned who was “usually responsible” for performing various health-related tasks, such as scheduling clinic appointments and calling for medication refills. A 5-point Likert scale was used, with each point having a description (1 = My parents only; 2 = Mostly my parents; 3 = Me and my parents together; 4 = Mostly me; 5 = I totally do it myself). A 4 or 5 was considered to be taking an active role. Tasks related to medication included requesting refills from the pharmacy, picking up medication from the pharmacy, and remembering to take medication. Between-visit behaviors included scheduling appointments, remembering appointments, getting to appointment, and contacting providers between visits if problems arose. Visit-related behaviors included preparing questions in advance, taking the primary talking role during the visits, answering questions, and asking questions. The survey also probed the comfort level during visits (for example: “How do you feel about your amount of participation during the visit?”: 1 = I wish I talked more; 2 = I wish I talked a little bit more; 3 = I think the amount is just right; 4 = I wish I talked a little bit less; 5 = I wish I talked less). The survey collected basic demographic information and information about diagnosis. Coded links to the medical record allowed review for confirmation of diagnosis, duration of disease, age, and gender.
Demographics and knowledge were reported by frequency and described as proportions. Mean scores on the Likert scale were tabulated, and the Likert scores were also assessed by frequency. Analysis was performed using Pearson or Exact chi-square analysis for categorical variables and analysis of variance (ANOVA) for continuous variables. All analyses were performed using SPSS software v. 13.0 (Chicago IL) and P < 0.05 indicated statistical significance.
The Children's Hospital Boston Committee on Clinical Investigation (IRB) reviewed the project and deemed it to be Quality Improvement (QI) and thus did not merit further review by the standards of our institution.
Of 358 surveys distributed in the outpatient settings, 322 were returned but 28 of these were not completed (three due to inadequate time, one Spanish speaking, three severe developmental delays, 12 refused, nine did not explain). Thus, 294 completed patient surveys were returned for a response rate of 82%.
The mean age of patient respondents was 16.2 years, with a range from 10 to 29; gender was almost equally divided, with 51% male. Distribution of diagnosis was Crohn's disease (69%), ulcerative colitis (28%), and unspecified IBD (IBDU) (3%). There was a wide variation in the duration of the disease. The mean duration was 4.2 years, but the range was 0 to 20 years. About half (54%) had IBD for 3 years or less (Table 1).
|Age in years|
|• 10-12||50 (17%)|
|• 13-15||80 (27%)|
|• 16-18||77 (27%)|
|• 19-20||49 (17%)|
|• 21-29||34 (12%)|
|• Male||164 (51%)|
|• Female||158 (49%)|
|• Crohn's||222 (69%)|
|• Ulcerative colitis||90 (28%)|
|• Indeterminate||10 (3%)|
|Duration of disease in years|
|• 3 or less||174 (54%)|
|• More than 3||148 (46%)|
Most patients relied on their parents for medication behaviors such as ordering refills and picking up medications from the pharmacy until over the age of 21 (Fig. 1). However, patients took an active role in remembering to take their medications: 25% of 10–12-year-olds, increasing to 60% of 16–18-year-olds and 95% over 21 years old. If the answer “sharing equally with my parent” was included, the number of patients taking responsibility for remembering to take medications increased, with 60% of 10–12-year-olds olds and 85% of 16–18-year-olds reporting responsibility. However, there was no change in the numbers of patients ordering refills or going to the pharmacy (data not shown).
Patients showed the least independence in the between-visit behaviors (Fig. 2). For example, in the 19–21-year-old group only 35% took an active role in scheduling appointments, 40% in remembering appointments, 40% in getting to the doctor, and 30% in contacting the provider between visits if there was a problem. When including those “sharing equally with parent,” this same group only increases to 60% scheduling appointments, and 65% getting to the doctor.
Visit-related behaviors demonstrated some increasing responsibility (Fig. 3), with patients reporting that they themselves were the main one to answer provider questions. While 15% of 10–12-year-olds played an active role answering questions, 55% of 16–18 and 85% of 19–21-year-olds did so. However, in the 19–21-year-old group, only 22% played an active role in preparing questions, 60% did the main talking, and 55% asked questions.
Patients were satisfied with their visits to a great extent. Most (96%) reported that they “always” or “usually” get the questions answered. Most (97%) stated they would ask a question if they had one, although 16% would “feel a little uncomfortable” and 2% would have their parents ask it later. Their amount of participation was just right for 84% of patients, with 14% reporting that they would like to have participated more and 2% wanting to participate less.
For all aspects of health-related behaviors in this cohort, the major influence on a patient's degree of independence was age. Males were less likely to order refills (P = 0.017) or prepare questions (P = 0.009). However, the duration or type of disease did not have an effect on the percentage of patients playing an active role in healthcare behaviors. Chronologic age was the determining factor for most behaviors studied.
Transition involves the gradual assumption of self-management skills by the patient in a developmentally appropriate fashion.1, 10, 11 These skills are crucial when interacting with the adult-focused healthcare system,12 but they take time to develop, and require the support of parents and physicians to teach the skills and insist that patients learn and practice them. The results of our study show a developmental increase in the communication and participation skills of patients during the adolescent years. However, we found that children do not share equally in these skills until the age of 19 or 20, and do not assume the main responsibility until their early 20s. This may be problematic, as many patients may live apart from parents for college or work after age 18.
In addition, early acquisition of skills may predict better adult health behaviors. Increased independence at pediatric visits correlated with increased success in transferring to adult care in a study of congenital cardiac patients.13 It may also signal acceptance of the condition. For example, a study of patients with Marfan's syndrome noted that self-management behaviors only started after patients accepted the reality of their diagnosis.14
It is expected that children will gradually take over management of their care from parents. Kieckhefer et al15 describe the evolving role of parent from “manager” to “supervisor” to “consultant.” For example, in 8–15-year-old patients tasks related to medication were exclusively performed by the parents.16 Schilling et al17 showed that younger adolescents with diabetes age 11–15 shared tasks with parents, while adolescents age 15–17 performed most tasks independently, and older patients age 17–19 had completely independent management of their diabetes. If the medical condition is not life threatening, the parents may be able to allow the child more autonomy. Several mothers of children with asthma noted that the experience of failing to follow treatment strategies and worsening often motivated teens to be more adherent.18
Provider expectations are influenced by many factors including the medical specialty, the local age of transfer, and even the provider's own ethnicity. Compared with Caucasian heritage providers, a significantly larger proportion of providers coming from minority backgrounds treating patients with sickle cell disease expected adolescents to have good working knowledge of the healthcare system and understanding of their illness.19 Providers caring for patients with cystic fibrosis expect that their patients can manage a series of tasks at early ages: at a median age of 5, identify providers; age 9, identify names and doses of enzymes; at age 12 the patients were expected to be able to adjust diet and enzymes for weight loss.20 It is not surprising that skills involving rote memory or mechanical skills, such as swallowing capsules, were expected earlier that those tasks requiring an assessment and subsequent action, such as adjusting diet for weight loss or recognizing and reporting symptoms of infection. Patton et al20 note “this finding is consistent with the developmental literature.”
Self-management is expected in the adult healthcare system, and patients need to be able to show the skills and understanding required to care for their own disease and to partner effectively with their providers. Our study shows that patients with IBD, a chronic medical condition, can be slow to develop the necessary skills for adult medical culture. This is despite a deliberate focus on patient education, but with an informal and individualized transition plan. Structured universal transition skill acquisition is probably needed to improve our patients' chances for improved health in the adult years.
There are several limitations in our study. It is from a single center and thus may not be generalizable. This study collected the self-reported behaviors of patients rather than observed behaviors. This might create an overestimation of skill, as the social desirability bias might lead patients to report higher skills or more responsible behaviors than they truly perform. Not all surveys were returned, and nonresponders may have had slower timelines for skill acquisition.
There are factors that we did not include that may have played a larger role than age or gender. We did not collect socioeconomic data, family structure, or patient locus of control. We did not find a way to explore parental characteristics or behavior. Disease severity was not measured directly, but inferred by the treatment category, and thus may be inaccurate for some patients. We also did not measure literacy, which affects self-management perceptions.22
This study is specific to patients with IBD, which is an acquired chronic disease. The timeline for self-management may be very different for diseases that require constant vigilance such as food allergies or diabetes. Patients may develop skills earlier out of necessity or on the other hand may be coddled by nervous parents. Congenital diseases may also show a different timeline of independent healthcare behaviors. Previous studies have typically focused on a single specialty or aggregated a wide variety of diseases together. We would like to compare categories of disease (congenital vs. acquired, chronic vs. life-threatening) across different specialties in the future to see how the disease consequences affect the assumption of patient self-management.
- 1A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110: 1304–1306.
- 6Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol. 2009; 25: e317–e322., , , et al.
- 7Hagan JF SJ, Duncan PM, eds, ed. Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents, 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2008.
- 15Measuring parent-child shared management of chronic illness. Pediatr Nurs. 2009; 35: 116–128., , , et al.