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Disclosure of Interests (last 3 years) Helvert Felipe Molina León
I certify that, to the best of my knowledge, no aspect of my current personal or professional situation might reasonably be expected to affect significantly my views on the subject on which I am presenting
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Exploring values and preferences of patients and their families for childhood Leukemias and Lymphomas
Clinical Practice Guidelines (CPG).
Concept mapping as an efficient methodological approach.
Diana Patricia Rivera MD, MPH Helvert Felipe Molina MD, MPH
CINETS Alliance
2
Outline
1. Background/ Context 2. Methodology: Concept mapping 3. Results 4. How did we use the results? 5. Conclusions
3
Background
4
1 - 4 years Number of deaths
Rate per 100.000 5 - 9 years Number of
deathsRate per 100.000 10-14 years Number
of deathsRate per 100.000
3,5
Malignant neoplasms of lymphoid, haematopoietic and related tissue 218 6,3
Congenital malformations, deformations and chromosomal abnormalities
72 1,6Accidental drowning and submersion 224 2,5
408 4,6
Malnutrition and nutritional anaemias 472 13,7
Accidental drowning and submersion 80 1,8
Malignant neoplasms of lymphoid, haematopoietic and related tissue
308
Land transport accidents 660 7,5
Intestinal infectious diseases 491 14,3 Influenza and Pneumonía 84 1,9 Intentional self-harm (suicide)
Congenital malformations, deformations and chromosomal abnormalities
509 14,8 Land transport accidents 132 3,0
Table 1. Leading causes of death in children less than 14 years old. Colombia 2007-2009
Influenza and Pneumonía 641 18,7Malignant neoplasms of lymphoid, haematopoietic and related tissue
135 3,1 Assault (homicide) 1986 22,6
Background
Source: GLOBOCAN 2008. http://globocan.iarc.fr/
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00 01 02 03 04 05 06 07
Argentina
Brazil
Mexico
Colombia
Spain
U.S.
Germany
Australia
Rate per 100.000 inhabitants
Graphic 1. Incidence rate of neoplasms of lymphoid, haematopoietic and related tissues in children and
adolescents 0-14 y.o. in different countries. 2008
Non-Hodgkin Lymphoma
Hodgkin Lymphoma
Leukemias
00 01 01 02 02 03 03 04 04
Argentina
Brazil
Mexico
Colombia
Spain
U.S.
Germany
Australia
Rate per 100.000 inhabitants
Graphic 2. Age Standarized Mortality rate of neoplasms of lymphoid, haematopoietic and related tissues in children and
adolescents 0-14 y.o. in different countries. 2008
Non-Hodgkin Lymphoma
Hodgkin Lymphoma
Leukemias
Background 2009 “Pediatric Leukemia and Lymphomas
Clinical Practice Guidelines (CPG)” PATIENTS INVOLVEMENT CHALLENGES • What does involving patients perspective mean?
• Which methodological approach should be used?
Short time Restricted budget Need of trustworthy, reliable results Transparent inclusion of results into the guideline
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Patients perspective involvement
• Comprehensive and systematic approach
• Integrating patients preferences, values and needs in the recommendations developed
• Purpose:
1. To empower the patient to have a say in a shared decision-making approach of clinical practice
2. As an strategy to improve adherence to CPG
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Objective
• To explore the preferences and values of patients and their relatives, involved in the process of care of childhood Acute Lymphoid Leukemias (ALL), Acute Myeloid Leukemia (AML), Hodgkin´s Lymphoma (HL) and Non-Hodgkin´s Lymphomas (NHL) that are to be included in a CPG.
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Concept mapping Qualitative-Quantitative methodology used for conceptualizing a group ideas, experiences, feelings about a specific topic.
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Participants • Patients older than 16 years old • Carers older than 18 years old • Mid-secondary educational level • Carers of ALL, AML, HL, NHL patients • Insured by different schemes (Contributive, Subsidized and
Non-affiliated but covered) • Women and men • Parents • Survivors • Carers other than parents • Health professionals • Urban and rural • Being treated at different Hospitals 10
Concept mapping 1. Generation of statements
Focus: Quality of life framework ¿What is needed for a child or adolescent diagnosed with Leukemia or Lymphoma to have a good quality of life?.
“the ability of the child or adolescent to function in different domains of life besides an adequate
psychosocial adjustment to everyday life situations”1
1. Kreitler S, Weyl Ben Arush M. Psychosocial aspects of pediatric oncology. England: Wiley
interscience;2004
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Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis 8. Family and carers should
comply with the treatment
12
Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
13
Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
14
Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
15
Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly 12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
16
Concept mapping 2. Structuring of statements
Rating
1 2 3 4 5 NO
IMPORTANCE VERY
IMPORTANT
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
17
Concept mapping 2. Structuring of statements
Sorting
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
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Concept mapping 2. Structuring of statements
Sorting
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
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Concept mapping 2. Structuring of statements
Sorting
2. Controling pain and vomiting
5. Improving child appetite
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment
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Concept mapping 2. Structuring of statements
Sorting
2. Controling pain and vomiting
10. That health care professionals
behave friendly
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment 5. Improving
child appetite
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Concept mapping 2. Structuring of statements
Sorting
2. Controling pain and vomiting
12. Making a timely and
exact diagnosis
8. Family and carers should
comply with the treatment 5. Improving
child appetite 10. That health care
professionals behave friendly
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Concept mapping 3. Analysis
A type of Multivariate analysis:
Multi dimensional Scaling Hierarchical cluster analysis
Sub-group analysis: Acute Lymphoid Leukemia Acute Myeloid Leukemia Hodgkin Lymphoma Non Hodgkin Lymphoma Ariadne® Software
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Concept mapping 4. Interpretation Participants Naming clusters Discussing relationships Researchers Translating concept maps content into health care
questions and outcomes
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RESULTS
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Humanized Care CL 1
Healt care insurance CL6 Hospital environment adaptation
CL5
Emotional support at home CL3
Information and support to the family CL2 Family-given care
CL4
Home-Hospital Links CL8
Hospital Infrastructure
CL7
Professionals’ technical capacity CL9
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Results
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Cluster name Items examplesMean Importance
ScoreTotal
Cluster
"Making a timely and exact diagnosis" 4,38
"Not missing chemotherapy" 4,23
"Health care personnel and patients communication should be warm and loving"
3,45
"Making children/adolescents feel important and useful" 3,87"Encourage children to dream beyond disease" 3,52
"Economic support to the family" 3,43"Parents should be able to afford what children need" 3,38
"Family and carers should comply with the treatment" 4"Parents should have information about children care" 3,14
"The child must keep studying" 2,78"Having recreational places" 2,65
"Comprehensive care for the children must be guaranteed by law" 4,48"Insurance companies shouldn´t deny neither procedures nor treatment for the disease"
4,3
"At the E.R. they should be given priority care" 4,14"Diagnostic tests for the children should be a priority" 3,74
"Parents shouldn´t have to go through so many administrative procedures for the treatment of their children"
3,87
"Physical activity must be promoted during hospitalization" 2,742,62
Health care insurance
Hospital infrastructure
Home-Hospital Links
Hospital environment adaptation
Health professionals´ technical skills and humanized care
2,40
4,14
3,49
Table 2. Concept map clusters structure and ranking of sampled items
3,37
2,69
2,73
3,08
Family-given care
Emotional support at home
Information and support to the family
How did we use the results?
Cluster Item Generic health care question
"Doctors should routinely order exams to detect the disease on time""Health care professionals should be on the alert for changes in the disease"
What is the best strategy to follow up patients with ALL?
"Controlling pain and vomiting" What are the best strategies to control pain and emesis in patients with ALL?
"Treating the fever" What are the best strategies to control fever in patients with ALL?
Outcomes
"Controlling pain and vomiting" Pain control
Quality and good service "Health care institutions should take into account children´s opinion" User´s satisfaction
Healt care questions
Children care "Providing psychological support to the child" What are the best strategies to provide emotional support to children with HL and their families?
Family care "Promoting support networks for the family" How to promote health supporting networks for the children with HL and their families?
Timely care "At the E.R. they should be given priority care" How should health institutions be organized to allow children with HL to continue with their normal life?
Outcomes"Families and patients must have psychological support during and after treatment" Emotional state of the family
"Families and patients must have psychological support during and after treatment" Emotional state of the children
Children care
Table 3. Examples of clusters, statements and health care questions suggested to be included into the CPG. Use of concept mapping results.
ACUTE LYMPHOID LEUKEMIA
Humanize medical care
"Controlling pain and vomiting" Emesis control
HODGKIN´S LYMPHOMA
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How did we used the results?
• GRADING RECOMMENDATIONS
GRADE APPROACH Quality of evidence Balance of desirable/undesirable outcomes Values and preferences Resources use
1. Patients participation during workshop
2. Patients representatives participation
3. Concept mapping results presentation during workshop
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Conclusions • Concept mapping as an alternative to indirect and
systematic patient involvement in CPG Strenghts: 1. Gives structure to ill-defined topics or issues 2. Yields results in a short time 3. As much resources as other qualitative
methodologies Weaknesses: 1. Needs more research on validity and reliability 2. Participants exhaustion 3. More systematic method to use results 30
Conclusions To really integrate patients perspetive CPG
should broad their focus: Family support: Psychological support and orientation on
home care Hospital services arrangements Linking hospital and home services
Important to define purpose of patient involvement in CPG
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Acknowledgements • We thank all the patients and carers who voluntarily and
committedly participated in this study. • We appreciate the contributions of Ana Marcela Torres MSc
and Adriana Linares MD leaders of the development team. • Everyone from the CINETS alliance team. • Ms Sarah Chalmers from NICE public and patient involvement
programme. • Prof. Craig Whitttington, prof. University College of
London,NCCMH UK. • Ms Claudia Cattivera , member of the Cochrane
Collaboration and Patient safety network • Dr. Gordon Guyatt, prof. Clinical epidemiology and
biostatistics at McMaster University. • QUATRO study group
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Thank you!!
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