Adhering to any routine is difficult, especially for the adolescent transferring to adult care.1,2
Adolescents are actively developing their individuality and independence, and these changes are often associated with risk-taking actions, emotional instability, and difficulty understanding or accepting the future consequences of present actions. Overt risk taking in this age group is an issue not only in renal disease but also in other chronic conditions—rheumatoid arthritis, lupus erythematosus with or without nephritis, cystic fibrosis, diabetes mellitus, and obesity.3–5
Such behavior fosters nonadherence, which is the extent to which a patient's actions coincide with medical advice or treatment plan, including taking medications at the right time and dose, and adopting recommended lifestyle changes.3
Nonadherence is reflected in missed appointments and a decrease in the ability to follow a set regimen, even if compliance was not a problem before the transfer.1,3 Unfortunately, a few missed treatment doses can have serious consequences, including transplant rejection episodes, hypertensive crises, new renal stone formation, and flares in lupus activity.
Changes in lifestyle are particularly difficult to implement and remain one of the major challenges to achieving adherence in patients with issues in hypertension and weight control.6 A successful approach needs the patient and physician to commit to a single treatment plan, developing an active collaboration to motivate the patient to maintain adherence and participate in decision making.3
Factors causing problems in transitioning and adherence are similar and include: (1) gaps in communication, (2) complexity of regimens, (3) lack of insurance coverage, (4) risk-taking behavior, (5) misunderstanding of stages in adolescent maturation, and (6) lack of appreciation that maturation continues into young adulthood.7,8
These factors can be defined and controlled by improving cooperation between pediatric and adult units, and by adding to transitioning patients' knowledge of their disease and medications. Providing advocacy for the patient until the new adult provider–patient relationship is established remains one of the main components associated with successful transitioning.9,10
Discussion of future transfer should be initiated early in the course of treatment planning to allow patients and families time to adjust to a shift in focus from the family to the patient, with an emphasis on independence and individual responsibility for self-care.10
It also is important to provide health care anticipatory services, including a discussion of the differences between the pediatric end-stage renal disease facility or chronic disease-specific program, which is characterized by intense multidisciplinary supportive care services, and adult patient programs, where the number of elements is fewer and visit time shorter.
Since adult facility staff members often experience difficulty engaging young adults, staff education can be helpful in building relationships. This education should aim to foster a better understanding that differences in maturation and reactive behavior are consequences of development that continue into young adulthood.7,11
Time to Transition
Timing of transition is based on emotional maturity and aimed at eventual integration into an adult provider system, with continuing dialogue between the family, patient, and adult and pediatric caregivers until the transfer is complete, which may take some years.
Since adherence to medication requires organization and planning skills that are still forming in adolescents, the transition period should focus on: (1) developing self-management ability so that patients can establish an appropriate daily routine, have knowledge of their medical history, and understand their medications and side effects; (2) facilitating discussions that help the patient explore factors interfering with adherence (such as forgetfulness and poor social planning), identify solutions, and create habits that will foster adherence; and 3) establishing basic survival skills for an adult clinic so that transitioning adolescents are able to discuss their own medical condition and present problems to the new providers, schedule appointments, and fill or refill prescriptions.
Patient care must be matched to developmental level. More intensive support may be necessary during this stage of early adulthood to prevent increased medical risk, particularly in patients with a renal transplant or other unstable renal condition, or those experiencing psychological issues.
A separate parallel transition period for parents of children with long-term chronic illness is necessary to emphasize patient independence and establish the new caregiver relationship. A single transfer appointment is not sufficient and increases the potential for nonadherence.3,10
Continuing social worker support to preempt insurance issues, as well as to provide school and college resources, is needed throughout the transition period to prevent a major disruption in care.9,12
Special measures that foster independence after the transfer include visits that are independent of parents or occur in the setting of a Young Adult Clinic.8,11 Peer interaction and pressure play a large part in the lifestyle and choices of the young adult.
Young Adult Clinics8 or transition clinics3,13 have been successful in promoting better attendance at appointments and continued adherence to medication. These approaches provide peer group support through the use of youth workers8,11 and social media, such as smartphone apps and Facebook,13 to improve communication with the clinic.
Now and Then
At the present time, the achievement of adherence in the transitioning adolescent rests on improving communication between pediatric and adult providers and on incorporating newer social media resources.
Education of personnel in pediatric and adult care units on the stages and consequences of young adult maturation and the associated reactive and risk-taking elements should assist all involved in engaging these patients and helping them attain their potential. Information sources also should be developed to assist patients in understanding their disease and medication regimens, including side effects.
Future advances in successfully transitioning adolescents to adult care will rest on better identifying patient, provider, and health care system factors involved in nonadherence and on developing standards for assessment.
1. Bell L. Adolescents with renal disease in an adult world: meeting the challenge of transition of care. Nephrol Dial Transplantation
2. Smith JM, Ho PL, McDonald RA. Renal transplant outcomes in adolescents: a report of the North American Pediatric Renal Transplant Cooperative Study. Pediatr Transplantation
3. Winnick S, Lucas DO, Hartman AL, Toll D. How do you improve compliance? Pediatrics
4. Bell LE, Bartosh SM, Davis CL, et al. Adolescent transition to adult care in solid-organ transplantation: a consensus conference report. Am J Transplantation
5. LaRosa C, Glah C, Baluarte HJ, Meyers KE. Solid-organ transplantation in childhood: transitioning to adult health care. Pediatrics
6. MacLaughlin HL, Sarafidis PA, Greenwood SA, Campbell KL, Hall WL, Macdougall IC. Compliance with a structured weight loss program is associated with reduced systolic blood pressure in obese patients with chronic kidney disease. Am J Hypertens
7. Watson AR. Noncompliance and transfer from pediatric to adult transplant unit. Pediatr Nephrol
8. Watson AR. Hospital youth work and adolescent support. Arch Dis Child
9. Sawicki GS, Whitworth R, Gunn L, Butterfield R, Lukens-Bull K, Wood D. Receipt of health care transition counseling in the national Survey of Adult Transition and Health. Pediatrics
10. Kauffman M. Nephrology transition 101. ASN Kidney News
11. Harden PN, Walsh G, Bandler N, et al. Bridging the gap: an integrated pediatric-to-adult clinical service for young adults with kidney failure. BMJ
12. Committee on Child Health Financing. Scope of health care benefits for children from birth through age 26. Pediatrics
13. Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care program which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25 years. Diab Med