Parent shaking hands with doctor with teenager in the background

IBD Transition Checklist for Patients and Parents

Marwah Saeed, BSc (Hons), MBBS

Written by: Marwah Saeed, BSc (Hons), MBBS

Updated: November 21st, 2022

As a child, your parents may have been overseeing your health care. But as you grow older, you will be expected to take charge of it. Because like learning to drive and getting a job, managing your health is part of being an adult. In Canada, your care will be transferred to adult health care providers once you turn 18 (Jawaid et al., 2019). However, you can begin transition of care as early as 12 years old.

The question then becomes, what is transition of care? The textbook definition is “the planned and purposeful movement of adolescents and young adults through the process of changing from child centered to adult-centered health care systems”. What it boils down to is, during your teens, you will work with your parents and healthcare team to gain the knowledge and skills necessary to take charge of your health. This may sound daunting and having Inflammatory Bowel Disease (IBD) can bring unique challenges to the process. But you are not alone; your family, friends and health care team will be there for the ride (Crohn’s and Colitis Foundation, 2021).

The following checklist will guide you on the tasks and responsibilities you will assume as you transition your care. Now remember, this checklist is not set in stone. Transition of care can be affected by factors such emotional and social well-being, maturity, support systems and disease activity. It is a dynamic process and is not the same for everyone (North American Society For Pediatric Gastroenterology, Hepatology & Nutrition [NASPGHAN], n.d.).

Patient Transition Checklist

PatientEarly Adolescence Age 12-14Mid Adolescence Age 14-17Late Adolescence Age 17+
Knowledge about my health  I can describe my condition and how it affects my body and everyday activities.

I can list my medication.

I know when I take each medication and how much I take.

I can manage my regular medical tasks at school.
I am familiar with my medical history.

I can list the foods and/or activities that make me feel uncomfortable and cause my disease to flare up.

I know why my doctor orders tests and the names of the tests.

I understand the risks of not taking my medicines 
I know what medications I should not take because they might interact with medications, I’m taking for my health condition.

I can manage all my medical tasks at school and at work.

I know how to get more information about IBD from reliable sources.
Independence I can answer many questions at a doctor’s appointment.

I spend most of my time alone with the doctor during a visit

I am alone with the doctor or choose who is with me during an appointment.

I am aware of my legal rights and responsibilities once I turn 18.
Disease managementI know my doctor’s and nurse’s names and their roles.

I can call my doctor to schedule or change an appointment.

I can answer at least 1 question during my medical appointment.
I know I will eventually need to transition to an adult gastroenterologist.

I am aware about local support services  
I can contact my medical team.

I can book my own appointment and refill prescriptions.

I am familiar with my health insurance plan and know the details of my coverage.

I always carry my insurance information in my wallet, purse, or backpack.

(Crohn’s and Colitis Foundation, 2021; NASPGHAN, n.d.)

Parent/Caregiver Checklist

As a parent or caregiver, you have been responsible for your child’s health, but it’s now time to involve them in decision making and encourage them to take on a more active role. Because the more they know, the smarter their decisions will be.

Parents/caregiversEarly Adolescence Age 12-14Mid Adolescence Age 14-17Late Adolescence Age 17+
Establishing self-management goalsMy child knows about IBD and when to get care.

My son/daughter can list the names of all their medicines, their dosages and when to take them, as well as common side effects.
My child is learning to fill prescriptions and schedule appointments.

My child is aware of the consequences of non-compliance.

My child keeps the contact information for his/her medical team in a wallet or backpack.
My child is transitioning to adult care and is being connected with an adult gastroenterologist.

He/she also has a family doctor.

My teenager has copies of his/her complete medical record for work, school, and transition. This includes medications, immunization history, allergies, tests and the name of their gastroenterologist and family doctor.
Foster independence  I am encouraging my child to ask questions about their health.

I am preparing my child to meet with the health care team alone in the future.

I step outside for part of the medical visit to give my child a chance to speak with the provider privately.
I continue to encourage my child’s active participation in office visits.

I allow my child to chose if I will be in the room for the assessment.

My teen is starting a job and will inform his/her employer how IBD can affect her work performance.
My child can describe specific plans for self-management of IBD, at home and at school, which were developed by his/her healthcare team.

My child is familiar with the details of his/her insurance coverage and carries the information on their person.

My teen is going to college and is considering the following plans:

1. Informing the Student Health team of their diagnosis to coordinate care with their gastroenterologist.
2. Informing the Office of Accessibilities to arrange for accommodation and academic plans in case of illness.
Health educationMy child is aware of the impact of IBD on lifestyle and everyday activities and the consequences of non-adherence to therapy.I am teaching my child about of the effect of drugs and alcohol on IBD and the impact of IBD on sexuality and fertility.My child is aware of the consequences of drugs and alcohol on IBD and the impact of IBD on sexuality and fertility.

(Agency for Clinical Innovation [ACI], 2020; Crohn’s and Colitis Foundation, 2021; Rosario, 2021)

References

Agency for Clinical Innovation. (2020). Transition Checklist for Parents and Carers. Retrieved November 2, 2022, from https://aci.health.nsw.gov.au/__data/assets/pdf_file/0011/650369/ACI-Transition-ideas-and-checklist-for-parents-and-carers.pdf.

Crohn’s and Colitis Foundation. (2021). Pediatric Education Tips on Inflammatory Bowel Disease, Practical Tips for Nurses and Advanced Practice Providers [Brochure]. Retrieved November 2, 2022, from https://www.crohnscolitisfoundation.org/sites/default/files/2020-04/back-to-college-and-school.pdf.

Jawaid, N., Jeyalingam, T., Nguyen, G., & Bollegala, N. (2019). Paediatric to adult transition of care in IBD: Understanding the current standard of care among Canadian adult academic gastroenterologists. Journal of the Canadian Association of Gastroenterology. https://doi.org/10.1093/jcag/gwz023

North American Society For Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN). (n.d.). Transitioning a Patient With IBD From Pediatric to Adult Care [Brochure]. Retrieved November 2, 2022, from https://naspghan.org/files/documents/pdfs/medical-resources/ibd/Checklist_PatientandHealthcareProdiver_TransitionfromPedtoAdult.pdf.

Rosario, J. F. del (Ed.). (2021, September). Transition of care: Inflammatory bowel disease (for parents). KidsHealth. Retrieved November 2, 2022, from https://kidshealth.org/en/parents/toc-ibd.html

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