2. To deliver an extraordinary
patient experience,
organizations have to understand the
experience their patients have, not
just in any one touchpoint, but across
the entire patient journey as a whole.
Brian Solis “The four pillars of innovative patient experiences”,
15 December 2020
peak
position
3. PROS: Engagement Roadmap
A traditional patient journey, in most
cases, closely aligns with the literal
definition of a journey. It is a clinical
description of the treatment &
management “experiences” of
patients, from diagnosis through
treatment and beyond
The Solstice Engagement Roadmap
process dives deeper into the patient/HCP
experiences, in order to understand not
only their symptoms & disease experience,
but also their knowledge/ skills/ abilities,
surrounding environment, and the
emotional/environmental barriers &
drivers to wellness
the traditional method our solution…
However, a typical journey
doesn’t delve deep enough into
those experiences to inform an
action to be taken
From this understanding, targeted
messaging can be developed and
channels identified to optimize
patient/HCP engagement
4. the problem…
Client was preparing for the launch of a drug for the treatment
of PIK3CA-Related Overgrowth Spectrum (PROS)
PROS is a group of rare disorders that cause overgrowth of parts
of the body, due to mutations in the PIK3CA gene responsible for
controlling cell growth. Several syndromes have been identified
within the PROS spectrum, including CLOVES, K-T, and M-CM.
Signs and symptoms of PROS depend on the specific syndrome
present. They can include vascular anomalies affecting the
capillaries, veins, and lymphatic system; neurological
abnormalities; and soft and boney tissue overgrowth of one or
multiple areas, with normal growth elsewhere.
PROS is quite rare with limited research. It is a complex
condition in that no two patients are alike, there is significant
overlap among syndromes, and diagnosis is inconsistent.
Currently there is no cure, just symptom management.
5. the objectives…
• Guide understanding of why patient, caregivers, and
HCPs do what they do when it comes to PROS
diagnosis, treatment, and support; and identify key
hooks and levers that can be impacted to affect change
• Better understand the experiences of patients and their
family members affected by PROS conditions
Determine the unmet needs for families in the areas of:
Diagnosis
Process
Practical and
Emotional Support
Identifying an
HCP Care Team
Interactions With
Medical Care System
Treatment Options
and Experience
6. by
results…
The PROS
Engagement
Roadmap
A dynamic, multi-pathed, interactive
representation of the life of a
patient from the womb to old age.
Created using insights gained
through direct interviews with
patients, caregivers, and HCPs,
intense research, in depth social
listening, and more.
by
7. The Solstice Patient Journey contains interactive icons,
that when clicked or tapped, provide in-depth important information
on a wealth of different aspects of each patient journey
results…
9. Added
complications
to patient
Multiple MDs
(non-experts)
Multiple tests
Surgeries
Severe cases
to the ER/
hospitalization/
surgery
Ultrasound (~20 wks)
Anomalies may appear
• Large head/extremities
• Extra/fused fingers or toes
• Extra fluid/masses
Others may
appear
Symptoms
progress
8 to 12 weeks
to get
results for
a diagnosis
Barriers to
genetic testing
Rarely
Testing
Genetic
Clinical
Diagnosis
Seek Out
Advocacy
Groups
FIL
M-CM
CLOVES
K-T Community
Children’s Hospital
VAC
Qualified
Specialist
Nervous,
helpless,
guilty
• Frequently scheduled
office visits
• Regular monitoring
(CT/MRI/ultrasound)
Extra tests and scans,
wait-and-see approach
Factors to
faster diagnosis
Treatment Considerations
• Mobility aids
• Compression garments
• Special shoes/orthotics
• PT, OT, ST, ABA,
nutrition support
Clinical
workup
Finding established
advocacy groups
Receiving
a diagnosis
Birth
Finding a
care team
Uncertainty
Finding the
right care team
Path to
diagnosis
Treatment
decision making
Searching
for answers
?
MISDIAGNOSES
Uncertainty
Puberty/Teenager
Birth
Symptoms Appear
• Vascular anomalies (atypical
growths or differences in veins,
arteries, capillaries, or lymphatic
vessels), port-wine stain
• Soft-/bony-tissue enlargement
• Asymmetrical overgrowth
• Enlarged head
• Macrodactyly (isolated overgrowth
and malformation of a digit,
whether of the hand or foot)
Toddler/Preschool
Mental health
needs/QoL
In Utero
PROS
Journey
THE Sample
Please Click or Tap points along the path*
*If prompted above, please Enable Interactive Elements.
For Best Experience, please use Adobe Acrobat
10. presentations
and publications
poster and video presentation
Navigation & Survivorship Conference, the annual meeting of the
Academy of Oncology Nurse & Patient Navigators (AONN+)
poster presentation
Pediatric Academic Societies (PAS) 2022 annual meeting during the
Children With Chronic Conditions Session III
published article
“Mapping the PIK3CA-Related Overgrowth Spectrum (PROS)
Patient and Caregiver Journey Using a Patient-Centered Approach”
Orphanet Journal of Rare Diseases (May 2022), the official journal of
Orphanet, the portal for rare diseases and orphan drugs.
