Pediatric Annals

Point of View 

Role of the Primary Care Provider in Transitioning Patients with Juvenile Arthritis

Tara Valcarcel, RN, MSN, CPNP

Abstract

Primary care providers are important partners in the management and transition of youth with special health care needs. This is particularly true for youth with rheumatic diseases; pediatric rheumatologists number less than 250 in the United States.1 Patients and their families often have to travel long distances for specialty visits at academic centers and pediatric rheumatologists rely on primary care providers for their knowledge of local community resources, such as physical and occupational therapists, as well as adult rheumatologists who will continue to follow rheumatology patients as they age.

My experience as a pediatric rheumatology nurse practitioner has provided me with the opportunity to work closely with adolescent patients and their families as they transition to adult services. These families express that transition is an overwhelming and sometimes frightening experience. I share my observations here, with the goal of improving the care we provide to our patients during transition; it is my wish that this will ultimately transform a potentially scary experience into a hopeful opportunity for adolescents to develop skills and build on their existing strengths.

Among the rheumatic diseases primary care providers (PCPs) will see in their practices, they are most likely to encounter juvenile idiopathic arthritis (JIA), the fifth most common chronic disease of childhood.2 Attention to the health care transition for youth with JIA is essential, since about one third of these patients will be diagnosed during adolescence3 and more than one third will continue to have active disease as adults.4

In an ideal world, all primary care and specialty practices would have transition coordinators to implement and oversee the process of transition with patients and their families. The reality, however, is that the process of transition must often occur in the setting of limited staff, time, and resources. Making it a point to spend a portion of each visit with your patients on transition is invaluable work.

Transition can be defined as “a purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults as they move from child-centered to adult-oriented health care systems.”5

Transition planning needs to start in early adolescence and take into consideration how JIA impacts the developmental tasks of adolescence. For instance, teens with JIA must adjust to how teratogenic medications affect their sexually maturing bodies, and to the effects of chronic prednisone use on their body image. As they develop a wider perspective, these patients may recognize how their chronic condition affects other members of their families; they then must cope with the varied emotions that this may bring up.

While they learn to form friendships that are mutually close and supportive, teens with JIA must navigate how to explain their condition to others, and if and when to disclose their condition to friends. I have noticed in my work that a particularly challenging aspect of JIA management that teens deal with as they develop abstract thinking skills is the need to continue taking medications even when they are feeling well.

With these issues in mind, the process of transition should be outlined in a written transition plan to be signed by the patient, a parent, and the PCP. A clear outline takes the mystery out of what transition entails and makes it less overwhelming by dividing the process into smaller, more manageable steps. The plan can be broken down into the stages of adolescence (early, middle, and late) and should include the following tasks:6

Able to tell provider what is wrong.

Knows names of medication, dose, reason for taking medication and expected response.

Knows any allergies they may have.

Knows the difference between health…

Primary care providers are important partners in the management and transition of youth with special health care needs. This is particularly true for youth with rheumatic diseases; pediatric rheumatologists number less than 250 in the United States.1 Patients and their families often have to travel long distances for specialty visits at academic centers and pediatric rheumatologists rely on primary care providers for their knowledge of local community resources, such as physical and occupational therapists, as well as adult rheumatologists who will continue to follow rheumatology patients as they age.

My experience as a pediatric rheumatology nurse practitioner has provided me with the opportunity to work closely with adolescent patients and their families as they transition to adult services. These families express that transition is an overwhelming and sometimes frightening experience. I share my observations here, with the goal of improving the care we provide to our patients during transition; it is my wish that this will ultimately transform a potentially scary experience into a hopeful opportunity for adolescents to develop skills and build on their existing strengths.

Among the rheumatic diseases primary care providers (PCPs) will see in their practices, they are most likely to encounter juvenile idiopathic arthritis (JIA), the fifth most common chronic disease of childhood.2 Attention to the health care transition for youth with JIA is essential, since about one third of these patients will be diagnosed during adolescence3 and more than one third will continue to have active disease as adults.4

In an ideal world, all primary care and specialty practices would have transition coordinators to implement and oversee the process of transition with patients and their families. The reality, however, is that the process of transition must often occur in the setting of limited staff, time, and resources. Making it a point to spend a portion of each visit with your patients on transition is invaluable work.

Challenges of Chronic Illness in Adolescence

Transition can be defined as “a purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults as they move from child-centered to adult-oriented health care systems.”5

Transition planning needs to start in early adolescence and take into consideration how JIA impacts the developmental tasks of adolescence. For instance, teens with JIA must adjust to how teratogenic medications affect their sexually maturing bodies, and to the effects of chronic prednisone use on their body image. As they develop a wider perspective, these patients may recognize how their chronic condition affects other members of their families; they then must cope with the varied emotions that this may bring up.

While they learn to form friendships that are mutually close and supportive, teens with JIA must navigate how to explain their condition to others, and if and when to disclose their condition to friends. I have noticed in my work that a particularly challenging aspect of JIA management that teens deal with as they develop abstract thinking skills is the need to continue taking medications even when they are feeling well.

Preparing for Transition

With these issues in mind, the process of transition should be outlined in a written transition plan to be signed by the patient, a parent, and the PCP. A clear outline takes the mystery out of what transition entails and makes it less overwhelming by dividing the process into smaller, more manageable steps. The plan can be broken down into the stages of adolescence (early, middle, and late) and should include the following tasks:6

Early Adolescence (Females: 9 to 13 Years, Males: 11 to 15 years)

  1. Able to tell provider what is wrong.

  2. Knows names of medication, dose, reason for taking medication and expected response.

  3. Knows any allergies they may have.

  4. Knows the difference between health care providers and their respective specialties.

  5. Knows date and reason for next appointment.

Middle Adolescence (Females 13 to 16 Years, Males: 14 to 17 Years)

  1. Knows basics of own health history, including family history.

  2. Makes own health care appointments.

  3. Calls pharmacy to refill prescriptions or calls providers about need for refill.

  4. Has increasing responsibility in family.

Late Adolescence (Females: 16 to 21 Years, Males: 17 to 21 years)

  1. Manages stable JIA independently.

  2. Participates in discussions regarding health care options.

  3. Keeps updated file of own health care records.

  4. Understands own insurance plan.

Self-Management Skills

Just as it takes years of practice to become a good doctor, nurse, or violinist, adolescents and their families need to practice self-management skills to be successful. I have observed that patients who transition most successfully are those whose providers:

  1. Help their patients develop the skills necessary to manage their chronic condition.

  2. Identify and build on patients’ existing strengths.

  3. Provide constructive feedback.

  4. Praise accomplishments along the way.

Eventually, a combination of the patient’s own readiness, insurance coverage, and respective pediatric provider’s practice policy will lead patients to the point where they must choose an adult rheumatologist and PCP and make their first appointment. The last appointment with the pediatric providers can occur before or after their first adult appointment and can serve as a time for reflection on how far the patient has come. This is a time of both closure and beginning in their lives.

A succinct summary of the patient’s medical history and problem list from the pediatric providers should accompany the patient to the first adult visit, along with an invitation to the adult provider from the pediatric practice for further discussion about the patient via email or phone.

Ultimately, transition is a process of helping youth learn to love, respect, and take good care of all aspects of themselves, not just their JIA. PCPs are in a unique position to offer hope to youth with JIA through their focus on anticipatory guidance and planning for the future. Routine adolescent visits with PCPs should acknowledge the youth’s JIA, but should focus on the common concerns of young people, such as growth and development, sexuality, mental health issues, substance use, and other health promoting and damaging behaviors. In this way, JIA becomes a particular, but not defining, aspect of the youth’s life.

References

  1. Deal CL, Hooker R, Harrington T, et al. The United States Rheumatology Workforce: supply and demand, 2005–2025. Arthritis Rheum. 2007;56(3):722–729. doi:10.1002/art.22437 [CrossRef]
  2. Schanberg LE, Sandstrom MJ. Causes of pain in children with arthritis. Rheum Dis Clin North Am. 1999;25(1):31–53, vi. doi:10.1016/S0889-857X(05)70054-5 [CrossRef]
  3. Oen K, Malleson PN, Cabral DA, Rosenberg AM, Petty RE, Cheang M. Disease course and outcome of juvenile rheumatoid arthritis in a multicenter cohort. J Rheumatol. 2002;29(9):1989–1999.
  4. Shaw KL, Southwood TR, McDonagh JEon behalf of the British Society of Paediatric and Adolescent Rheumatology. Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology. 2005;44(6):806–812. doi:10.1093/rheumatology/keh603 [CrossRef]
  5. Department of Health, Child Health and Maternity Services Branch. Transition: Getting it Right for Young People. Improving the Transition of Young People with Long Term Conditions from Children’s to Adult Health Services. London: Department of Health; 2006. Available at: www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4132149.pdf. Accessed Oct. 1, 2012.
  6. Shriner’s Hospital for Children Northern California. It’s Your Future - Go for It! A Transition Guide for Teen & Parents. Available at: www.answers4families.org/family/youth-transition/transition-planning/transition-guide-teens-parents-its-your-future-go-it. Accessed Oct. 1, 2012.
Authors

Tara Valcarcel, RN, MSN, CPNP, is a Pediatric Nurse Practicioner, Department of Rheumatology, University of California, San Francisco Medical Center.
Address correspondence to: Tara Valcarcel, RN, MSN, CPNP, University of California, San Francisco Medical Center, Department of Pediatric Rheumatology, 533 Parnassus Avenue, Box 0107, San Francisco, CA 94143; email: tara.valcarcel@ucsfmedctr.org.
Disclosure: The author has no relevant financial relationships to disclose.

10.3928/00904481-20121022-13

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