Pediatric Transitions of Care

How can we provide a better transition from pediatrics to adult care for our teens with complex health care needs? 

WORK AT
Mayo Clinic - Center for Innovation

TIMELINE
12 months

ROLE
Lead Service Designer/ Design Researcher

ACTIVITIES
Patient / Family / Provider observations
Stakeholder interviews
Workshop facilitation
Synthesis presentation
Prototype development and testing
Secondary research / literature review

OUTCOME
Six prototypes were experimented and gathered data. One prototype was very successful and utilized in a project around College students transitions. Presented recommendations of step, stretch, leap concepts to Children’s Center leadership for consideration of funding and implementation. 


I worked with one other service designer and partnered with the Children’s Center across multiple departments to identify and prototype ways to improve the transition from pediatric to adult care. We started by researching and understanding the teen experience at Mayo Clinic and at institutions across the world. We researched analogous industries and people who went through transitions as well other health care institutions who were also starting transition programs. We conducted surveys, interviews and observations across 11 pediatric departments.

Research summary document highlighting what we researched and learned

Process map of current transition appointments for patients with Cystic Fibrosis

Based on insights and research, we created patient personas in order to better tell the story of what the current transition of care experience felt like.

Main Insights: 

 

PATIENT / PARENT INSIGHTS

  1.  “My pediatric provider was like an uncle to me, and then he was just gone…” Patients and parents form deep relationships with their pediatric care team, leaving them is a big deal. We should not underestimate the relationship families have with a doctor who has cared for their child during the most difficult times and the impact it can have to be cut off from that supportive relationship. 
  2. "I don't know how to let go" Parents take on the role of caretaker, knowledge holder and question master when their child is diagnosed with a serious condition. They just want their child to be a child and not have to worry and take on responsibility. However, as a child gets older the responsibility and knowledge needs to shift, yet it's hard for a parent to know how to let go and teach their child. 
  3. "I need to know what to do when we're not at the doctor'sClinical visits happen at regular intervals, however, patients lives do not wait to have important events only happen when they plan on going to the doctors. Parents and patients need to feel confident in handling life situations that may have a medical consequence. 

STAFF INSIGHTS

  1. Care providers lack confidence in the system and makes more work arounds.  We saw staff members creating extra excel files of patients they transitioned and dates to look them up to make sure nothing bad had happened. There was no trust in the current system that the hand-off from pediatric to adult care would go smoothly. 
  2. Systemic barriers only perpetuate the distrust in the system. We heard stories about patients who were transferred to adult care only to be sent back to pediatrics because there was limited access to adult providers and they didn't have room to take more patients. 
  3. Nurses are the glue that can bridge the two worlds. Nurses play an important role translating what the doctor ordered to patients and making education relevant. When nurses were able to be a part of the transfer appointment, they were able to translate the new system and instill confidence and trust that everything would be ok to the patient and parent.  

 

 

Patient and Parent persona, certain factors were indicators of the success of a patient and parent after their transfer to adult care

We discovered that there are certain influence factors that can positively or negatively impact a transition. These factors are on a sliding scale for both a patient and their parent. By knowing where a patient and parent are low, a tailored experience can be created to improve their transition experience.  

  1. Relationship with Care Team - The tighter the bond with the pediatric care team the harder it will be to transfer. If a high relationship then more focus needs to be on building the relationship with the adult provider and not cutting ties with pediatric team.
  2. Engagement - This is the individual's degree of involvement in the process, seeking out information, finding role models and being proactive. The more engaged a patient is the more positive the transition to adult care will be. 
  3. Compliance - This relates to a medical goal providers set for their patients, usually a number from a test or usage of medication. The more compliant a pediatric patient is with their doctors orders the more positive their relationship starts with their adult provider. 
  4. Communication Involvement - This indicates who is communicating with the care team in appointments, on the phone and online. This is something to be aware of because in adult appointments the parents are no longer invited into the room, this could provide the space for the patient to talk, or reveal a giant gap in knowledge. The reason for the communication involvement should be assessed before transitioning and balance out the communication early in the process. 
  5. Awareness of System - This refers to the patients or parents ability to navigate insurance, bills, community resources and legal documents. The more a patient is saavy at understanding and navigating the entire healthcare system the more successful they will be in adult care.  

Identified gaps in transition process 1.) clinical touchpoints happen at regular intervals but don't align with life events happening to a patient 2.) lack of preparation around legal needs when a child turns 18, leading to unnecessary complications 3.) the feeling of being thrown off a cliff with no connection to the pediatric team and no relationship with the adult provider

Trajectory map of engagement of persona mapping life events, clinical touchpoints and how engagement drops with transfer to adult care

Map of the ideal trajectory that 1.) increases a teen's engagement and confidently decreases a parent's engagement through preparation activities 2.) handles all legal changes that happen at age 18 through planning interventions 3.) provides a structure to the transfer from pediatric to adult through joint appointments or warm hand-offs to reduce the anxiety of leaving the comfort of pediatric care that families have sometimes known all their life

We formed smaller project teams of nurses and providers to create prototypes to test out in their departments. Each project team went through a workshop to co-create a final prototype together. Prototype concepts focused on:
1.) how to assess the current knowledge of patient
2.)
 how to deliver education about what happens during life transitions
3.) how to seamlessly integrate the legal documentation at significant age changes 
4.) how to improve the actual transfer moment experience.
 We mapped out all possible experiments and narrowed down to the top 6 to prototype. 

Doctor mapping out ideal experience

Excerpt from experimentation document

Experiment 1 - Conversation Tools:

What: Three different conversation tools used with seven patients. 

Why: Care Teams struggle to get teenagers to open up and talk using traditional interviewing techniques. After observing appointments we created three different tools for the social worker to try out.

Outcome: The tools were productive in sparking conversation among all the patients addressing topics such as dorm room needs, safety in college, mental health concerns and condition questions that had not been discussed in previous appointments. 

Utilized an existing health tool

"It helped us be intentional with the way we can enhance our appointments. It lets us pause and be mindful of how we're addressing and understanding our patients' needs." - Social Worker

 

Experiment 2 Path Level Cards:

What: Digital and paper based challenge assessment cards. User starts on Level 1 and works there way through Level 4 with an optional Level 5. Used with 14 patients ages 9-23, only three patients progressed to level 5 in one appointment.

Why: We created these cards geared towards the patient and parent being the audience based on the realization that all current patient assessment tools were directed at the providers. Our hypothesis was that these cards would more truly allow the Care Team to see what a patient knew and allow for the parents to know what types of conversations to have and reinforce at home.

Outcome:  Valuable patient information was identified through the use of the cards such as a patient not sleeping, feelings of depression and lack of knowledge around the importance of having an Epipen for a severe allergy. These cards went home with parents and teens and allowed for the conversation and correct re-enforcement of information to happen outside of the clinic.  These cards were also adapted for another project focused on high school seniors transitioning to college at Arizona State University. 

"It was a good way to start the conversation and see what areas we need to reinforce" - Mom

"Did you see this mom, I'm supposed to do more of the talking, not you" - 17 year old patient