Grand Rounds presentation by Cathy Humphreys, Gabriel Ronen, Olaf Kraus de Camargo, Peter Rosenbaum and Sara Patterson about how to integrate concepts and frameworks of Narrative Medicine, Patient Reported Outcomes and the ICF framework in order to provide personalized healthcare to children and their families.

1. Personalized Medicine in Paediatrics:
What DoesThis Mean,
and What Could It Look like?
Cathy Humphreys, Gabriel Ronen, Olaf Kraus de
Camargo, Peter Rosenbaum, Sarah Patterson
Capturing the Lives of Children andYouth
Paediatric Grand Rounds, May 27th, 2021

2. Acknowledgements
§ We would like to begin by acknowledging that we meet on the
traditional territories of the Mississauga and Haudenosaunee nations,
and within the lands protected by the “Dish with One Spoon”
wampum agreement.
§ We would also like to acknowledge that living on this land gives us
the opportunity to learn not only from all the ethnicities that settled
here but also from the first people who lived here:
7 Grandfather Teachings

3. 7 Grandfather Teachings
1. Honesty (Gwayakwaadiziwin)
2. Respect (Manaadendamowin)
3. Humility (Dabaadendiziwin)
4. Love (Zaagi’idiwin)
5. Wisdom (Nibwaakaawin)
6. Bravery/Courage (Aakode’ewin)
7. Truth (Debwewin)
Kading ML, Gonzalez MB, Herman KA, Gonzalez J,Walls ML. Living a GoodWay of Life: Perspectives
from American Indian and First NationYoung Adults.Am J Community Psychol. 2019;64:21–33.

4. Personalized Medicine in Paediatrics:
What DoesThis Mean,
and What Could It Look like?
Cathy Humphreys, Gabriel Ronen, Olaf Kraus de
Camargo, Peter Rosenbaum, Sarah Patterson
Capturing the Lives of Children andYouth
Paediatric Grand Rounds, May 27th, 2021
Ronen GM, Kraus de Camargo O, Rosenbaum PL. How Can We Create Osler’s “Great Physician”?
Fundamentals for Physicians’ Competency in the Twenty-first Century. Med Sci Educ [Internet]. Medical Science
Educator; 2020;30:1279–84. http://link.springer.com/10.1007/s40670-020-01003-1

6. Diseases & Persons*
§Disease
§Symptoms (fever/pain)
§Organ dysfunction
§Structural
(genetic/metabolic/infec
tious) lesion
§Health professionals
§Health system
§*Personhood/Roles
§Child
§Grandchild
§Friend
§Student
§Hobbyist
§Learner
§Citizen
*Cassel E.The Nature of Suffering and the Goals of Medicine. N Engl J Med. 1982;306:641–5.

7. Diseases & Persons
§Disease
§Symptoms (fever/pain)
§Organ dysfunction
§Structural
(genetic/metabolic/infec
tious) lesion
§Health professionals
§Health system
§Person
§Suffering
§Fear
§Activities
§Participation
§Family
§School

9. TheVoices of children
The results of qualitative inquiry:
§The experience of having a conditions: feeling trapped
§Life fulfillment: school issues and activities
§Social: carrying on with life
§Impact of a condition: seeing oneself different
Ronen GM, Rosenbaum P, Lau M, Streiner DL. Health Related Quality Of Life In Childhood Epilepsy;The Results of
Children's Participation in Identifying the Components. Dev Med Child Neurol 1999, 41: 554-559

10. TheVoices of parents
The results of qualitative inquiry:
§ The experience of having a conditions: child’s knowledge, and affect
§ Life fulfillment: hospital and healthcare issues
§ Social: stigma
§ Impact of a condition: uncertainty
§ Attribution: condition vs. child development and social issues
Ronen GM, Rosenbaum P, Lau M, Streiner DL. Health Related Quality Of Life In Childhood Epilepsy;The Results of
Children's Participation in Identifying the Components. Dev Med Child Neurol 1999, 41: 554-559

11. Child/parent aspects
Quantitative exploration of the qualitative data
§ Peer and parents’ support are the major determinants of QoL
§ Children rate their QOL better except for worries & concerns
§ Parents are unaware for their child’s domain for ‘quest for normality’
§ Only the parents are concerned about ‘future’ issues
Ronen et al. 2003, Verhey et al. 2009, Fayed et al. 2015

12. Child/parent discordance
Quantitative exploration with effect size >.5
§ Epilepsy parents were concerned about mood/emotions & bullying
§ CP parents were concerned over physical wellbeing, autonomy & social
support
§ Epilepsy children scored their behavior 2-3 times better than did their
parents; almost comparable with their typical siblings’ self-report.
§ Parents scored worse behavior for their children with epilepsy than for
their siblings, even when children became problem free.
Mezgebe et al. 2015, Eom et al. 2016

13. Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
Low - Stable
Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
Low - Increasing
Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
Moderate/Low - Stable
Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
Average - Increasing
Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
Moderate/High - Stable
Baseline 7 14 21 28
50
60
70
80
90
100
Time
CHEQOL-25
Score
High - Stable
Child trajectory classes
This trajectory class was
ignored by parents
(~20%)
Ferro et al. 2017
(27%, 35%)
(5%, 10%) (14%, 21%)
(27%, 35%)
(8%, 8%)

14. Narrative Medicine
§“Narrative knowledge is what one uses to understand the
meaning and significance of stories through cognitive,
symbolic, and affective means.”
Charon R. Narrative Medicine A Model for Empathy, Reflection, Profession, andTrust.
JAMA - J Am Med Assoc. 2001;286(15):1897-1902.
https://jamanetwork.com/journals/jama/fullarticle/194300

15. Narrative Medicine
§ “Narrative knowledge is what one uses to understand the meaning
and significance of stories through cognitive, symbolic, and affective
means.”
§ Unlike its complement – logic and scientific knowledge –
narrative knowledge leads to a specific understanding about a
single situation by one participant or observer.
Charon R. Narrative Medicine A Model for Empathy, Reflection, Profession, andTrust.
JAMA - J Am Med Assoc. 2001;286(15):1897-1902.
https://jamanetwork.com/journals/jama/fullarticle/194300

16. Narrative Medicine
§ “Narrative knowledge is what one uses to understand the meaning
and significance of stories through cognitive, symbolic, and affective
means.”
§ Unlike its complement – logic and scientific knowledge – narrative
knowledge leads to specific understanding about a single situation by
one participant or observer.
§“Medicine can, as a result, better understand the experiences
of sick people”
Charon R. Narrative Medicine A Model for Empathy, Reflection, Profession, andTrust.
JAMA - J Am Med Assoc. 2001;286(15):1897-1902.
https://jamanetwork.com/journals/jama/fullarticle/194300

17. PROs and PROMs
§PROs and PROMs reflect any aspect of a personal report of
the individual’s health that comes directly from that person,
unfiltered by others.
Valderas JM,Alonso J. Patient reported outcome measures: a model-based classification
system for research and clinical practice. Qual Life Res. 2008;17(9):1125-1135.

18. PROs and PROMs
§ PROs and PROMs reflect any aspect of a personal report of the
individual’s health that comes directly from that person, unfiltered by
others.
§Help healthcare providers to focus on a person’s individual
health goals and guide diagnostic and management decisions.
Valderas JM,Alonso J. Patient reported outcome measures: a model-based classification
system for research and clinical practice. Qual Life Res. 2008;17(9):1125-1135.

19. PROs and PROMs
§ PROs and PROMs reflect any aspect of a personal report of the
individual’s health that comes directly from that person, unfiltered by
others.
§ Help healthcare providers to focus on a person’s individual health
goals and guide diagnostic and management decisions.
§PROMs (M=measure) can teach us whether, in their own
eyes, our patients are truly better after interventions, by
following the ethical principle of doing more good than harm
within the context of their own lives.
Valderas JM,Alonso J. Patient reported outcome measures: a model-based classification
system for research and clinical practice. Qual Life Res. 2008;17(9):1125-1135.

20. Perspectives
https://youtu.be/MEEvyIuBZTU
Izaak Walton Killam (IWK) Hospital for ChildrenYouth Advisory CouncilVideo

22. Variables to Consider
§Child variables
§ developmental age, temperament, state/trait anxiety, past
experiences/memories, culture
§Family/social variables
§ Family & social supports, caregiver/child relationships, stressors,
parental coping & anxiety, health of other family members

23. Variables to Consider
§Healthcare variables
§ # of invasive procedures, LOS, changes in mobility
§Environmental variables
§ What role do we play in their experience?

24. Why?
“ They looked into my mouth and into my ears, they looked
into my eyes and they touched my tummy. But they never
looked at me.”
7 year old hospitalized patient (ACCH, 1990, p.19)

26. Frameworks
§Stress Potential Assessment (1990)
§Psychosocial Assessment Tool (PAT) (2001, 2008, 2018)
§Minnesota Stress Indicator Levels (2006)
§Psychosocial Risk Assessment in Pediatrics (PRAP) (2014)
§Child Life Assessment Intervention Plan (CLAIP) (1989, 2002,
2015)
§International Classification of Functioning, Disability and
Health (ICF) (WHO, 2001)

27. Health Condition
(disorder/disease)
Body functions &
structures
(Impairment)
Activities
(Limitation)
Participation
(Restriction)
Environmental
Factors
Personal
Factors
ICF – Biopsychosocial Model
WHO, 2001

28. Health Condition
(disorder/disease)
Body functions &
structures
(Impairment)
Activities
(Limitation)
Participation
(Restriction)
Environmental
Factors
Personal
Factors
ICF – Biopsychosocial Model
WHO, 2001

29. Health Condition
(disorder/disease)
Body functions &
structures
(Impairment)
Activities
(Limitation)
Participation
(Restriction)
Environmental
Factors
Personal
Factors
ICF – Biopsychosocial Model
WHO, 2001

30. Health Condition
(disorder/disease)
Body functions &
structures
(Impairment)
Activities
(Limitation)
Participation
(Restriction)
Environmental
Factors
Personal
Factors
ICF – Biopsychosocial Model
Pain
Fever
Dysfunction
Structural lesion
Health professionals
Health system
Suffering
Fear
Activity limitation
Participation restriction
Family Work
WHO, 2001

31. The F-Words and the ICF
§The ‘F-words for Child Development’ were created to
bring the WHO’s ICF framework for health to life.
§The ‘f-words’ we chose were meant simply to remind
people about aspects of children’s and young people’s
lives that are important to them.
§The next slide illustrates this integration.

32. The F-Words and the ICF
Body Structure and
Function
Activity Participation
Environmental
Factors
Personal Factors
Future
Fitness
Everyone needs to stay fit and healthy, including
me! Help me find ways to keep fit.
Function
I might do things differently but I CAN do them.
How I do it is not important. Please let me try!
Friends
Having childhood friends is important. Please give
me opportunities to make friends with my peers.
Family
They know me best and I trust them to do what’s best for
me. Listen to them. Talk to them. Hear them. Respect them.
Fun
Childhood is about having fun and play. This is how I learn
and grow. Please help me do the activities that I find the
most fun.
1) World Health Organization. (2001) International Classification of
Functioning, Disability and Health (ICF)
2) Rosenbaum P & Gorter JW. (2012). The ‘F-words’ in childhood disability:
I swear this is how we should think! Child Care Health Dev; 38.
*Photos shared with permission from World CP Day.
For more information visit the F-words Knowledge Hub:
www.canchild.ca/f-words
The ICF Framework1 and the ‘F-Words’2

33. Click to edit Master title style

34. Click to edit Master title style

35. 36
F-words drawings
by a 7-year-old girl,
solicited by a
Child Life student

36. 12 yo boy, FASD
The Clinical Account

37. 12 yo boy, FASD The Personal Account, through an ICF Lens

38. Personalized Medicine in Paediatrics:
What DoesThis Mean,
and What Could It Look like?
Capturing the Lives of Children andYouth

39. Children’sVoices
https://youtu.be/m5yCOSHeYn4
Kid President's 20 ThingsWe Should Say More Often

40. References
§ Kading ML, Gonzalez MB, Herman KA, Gonzalez J, Walls ML. Living a Good Way of Life: Perspectives from American Indian and First Nation Young Adults. Am J Community Psychol. 2019;64:21–33
§ Ronen GM, Kraus de Camargo O, Rosenbaum PL. How Can We Create Osler’s “Great Physician”? Fundamentals for Physicians’ Competency in the Twenty-first Century. Med Sci Educ [Internet]. Medical Science
Educator; 2020;30:1279–84. http://link.springer.com/10.1007/s40670-020-01003-1
§ Cassel E. The Nature of Suffering and the Goals of Medicine. N Engl J Med. 1982;306:641–5
§ Ronen GM, Rosenbaum P, Lau M, Streiner DL. Health Related Quality Of Life In Childhood Epilepsy; The Results of Children's Participation in Identifying the Components. Dev Med Child Neurol 1999, 41: 554-559
§ Ronen GM, Streiner DL, Rosenbaum P, Canadian Pediatric Epilepsy Network. Health-related quality of life in childhood epilepsy: Development of self-report and parent proxy-response measures. Epilepsia 2003;
44:598-612.
§ Verhey LH , Kulik DM, Ronen GM, Rosenbaum P, Lach L, Streiner DL , and the Canadian Pediatric Epilepsy Network. Quality of life in childhood epilepsy: What is the level of agreement between youth and their
parents? Epilepsy Behav 2009; 14: 407-410.
§ Fayed N, Davis A, Streiner DL, Boyle MH, Cunningham CE, Lach L, Rosenbaum PL, Ronen GM. Quality of life among Children with epilepsy from their point of view. Neurology 2015; 84 (18): 1830-1837.
§ Mezgebe M, Akhtar-Danesh G, Streiner DL,Fayed N, Rosenbaum PL, Ronen GM. Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy?
Epilepsy Behav 2015; 52:239-243.
§ Eom S, Caplan R, Berg A. Behavioral issues and childhood epilepsy: parents vs child perspectives. J Pediatr 2016;179:233-9.
§ Ferro MA, Avery L, Fayed N, Streiner DL, Cunningham CE, Boyle MH, Lach L, Glidden G, Rosenbaum PL, Ronen GM, on behalf of the QUALITÉ group. Child and parent-reported quality of life trajectories in children
with epilepsy. Epilepsia 2017; 58:1277-1286.
§ Charon R. Narrative Medicine A Model for Empathy, Reflection, Profession, and Trust. JAMA - J Am Med Assoc. 2001;286(15):1897-1902.
§ Valderas JM, Alonso J. Patient reported outcome measures: a model-based classification system for research and clinical practice. Qual Life Res. 2008;17(9):1125-1135.
§ WHO (World Health Organization). International classification of functioning, disability and health : ICF [Internet]. Geneva PP - Geneva: World Health Organization; 2001: https://apps.who.int/iris/handle/10665/42407
§ Association for the Care of Children’s Health (1990) as cited in Pearson, L. (2018). Children’s Hospitalization and Other Health-Care Encounters. In J. Rollins, R. Bolig, C. Mahan (Eds.), Meeting Children’s Psychosocial
Needs Across the Health-Care Continuum (2nd edition), p.14. Pro-ed.
§ Kraus de Camargo O, Simon L, Ronen GM, Rosenbaum PL, Herausgeber. ICF: A hands-on approach for clinicians and families [Internet]. First. London, UK: Mac Keith Press; 2019. http://www.mackeith.co.uk/shop/icf-
a-hands-on-approach-for-clinicians-and-families-ebook/

41. Videos
§ Izaak Walton Killam (IWK) Hospital for ChildrenYouth Advisory
CouncilVideo: https://www.iwk.nshealth.ca/youth-advisory-
council/our-work
§ Kid President's 20 Things We Should Say More Often:
https://youtu.be/m5yCOSHeYn4