There are \~6,200 children in Ontario with special and complex healthcare needs requiring multiple services from many different doctors and other healthcare providers. These children are at a high risk of missed, duplicated or inappropriate care, and extraordinary financial burden and stress on families. While small in number (\<1% of Ontario kids), these children use 1/3 of all child healthcare resources, and are known to desperately need coordinated care to optimize their health. Complex Care Kids Ontario (CCKO) brings together researchers, children and families, and healthcare providers from across Ontario to develop, implement and evaluate an evidence-based and coordinated model of care for every child with medical complexity in Ontario.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
TREATMENT
Masking
NONE
Enrollment
160
The CCKO intervention involves intensive care coordination, defined as: "deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient's care to facilitate the appropriate delivery of health care services. Organizing care involves marshaling of personnel and other resources needed to carry out all required patient care activities and is often managed by the exchange of information among participants responsible for different aspects of care". Within CCKO, intensive care coordination will specifically include: 1) the tailored, family/health care provider co-creation and regular updating of care coordination plans for each child which will be 2) facilitated and accounted for by key workers partnering with families.
Hamilton Health Sciences
Hamilton, Ontario, Canada
London Health Sciences Centre
London, Ontario, Canada
Children's Hospital of Eastern Ontario
Ottawa, Ontario, Canada
The Hospital for Sick Children
Toronto, Ontario, Canada
Service delivery outcomes: coordination of care among health providers and families, coordination of care between health providers and families, utility of follow-up planning tools
These outcomes will be assessed with the Family Experiences with Coordination of Care (FECC) survey.
Time frame: Baseline
Service delivery outcomes: coordination of care among health providers and families, coordination of care between health providers and families, utility of follow-up planning tools
These outcomes will be assessed with the Family Experiences with Coordination of Care (FECC) survey.
Time frame: 6 months
Service delivery outcomes: coordination of care among health providers and families, coordination of care between health providers and families, utility of follow-up planning tools
These outcomes will be assessed with the Family Experiences with Coordination of Care (FECC) survey.
Time frame: 12 months
Service delivery outcomes: coordination of care among health providers and families, coordination of care between health providers and families, utility of follow-up planning tools
These outcomes will be assessed with the Family Experiences with Coordination of Care (FECC) survey.
Time frame: 24 months
Child quality of life & overall emotional health
These outcomes will be assessed using the using the "Feelings" subscale from the KIDSCREEN-52 (6 items), used in over 250 studies in the child health services literature since its publication in 2005.
Time frame: Baseline
Child quality of life & overall emotional health
These outcomes will be assessed using the using the "Feelings" subscale from the KIDSCREEN-52 (6 items), used in over 250 studies in the child health services literature since its publication in 2005.
Time frame: 6 months
Child quality of life & overall emotional health
These outcomes will be assessed using the using the "Feelings" subscale from the KIDSCREEN-52 (6 items), used in over 250 studies in the child health services literature since its publication in 2005.
Time frame: 12 months
Child quality of life & overall emotional health
These outcomes will be assessed using the using the "Feelings" subscale from the KIDSCREEN-52 (6 items), used in over 250 studies in the child health services literature since its publication in 2005.
Time frame: 24 months
Child physical pain
Children's physical pain will be measured using only self or proxy reports of pain according to a 10 cm linear Visual Analog Scale (VAS).
Time frame: Baseline
Child physical pain
Children's physical pain will be measured using only self or proxy reports of pain according to a 10 cm linear Visual Analog Scale (VAS).
Time frame: 6 months
Child physical pain
Children's physical pain will be measured using only self or proxy reports of pain according to a 10 cm linear Visual Analog Scale (VAS).
Time frame: 12 months
Child physical pain
Children's physical pain will be measured using only self or proxy reports of pain according to a 10 cm linear Visual Analog Scale (VAS).
Time frame: 24 months
Parents' Quality of Life
Parents' quality of life will be measured according to a subjective life appraisal definition with Diener's highly validated Satisfaction with Life Scale (SWLS) (5 items) which is the most validated life satisfaction scale in health and social sciences literature.
Time frame: Baseline
Parents' Quality of Life
Parents' quality of life will also be measured with an adapted version of the KIDSCREEN survey subscale for Feelings.
Time frame: Baseline
Parents' Quality of Life
Parents' quality of life will be measured according to a subjective life appraisal definition with Diener's highly validated Satisfaction with Life Scale (SWLS) (5 items) which is the most validated life satisfaction scale in health and social sciences literature.
Time frame: 6 months
Parents' Quality of Life
Parents' quality of life will also be measured with an adapted version of the KIDSCREEN survey subscale for Feelings.
Time frame: 6 months
Parents' Quality of Life
Parents' quality of life will be measured according to a subjective life appraisal definition with Diener's highly validated Satisfaction with Life Scale (SWLS) (5 items) which is the most validated life satisfaction scale in health and social sciences literature.
Time frame: 12 months
Parents' Quality of Life
Parents' quality of life will be measured according to a subjective life appraisal definition with Diener's highly validated Satisfaction with Life Scale (SWLS) (5 items) which is the most validated life satisfaction scale in health and social sciences literature.
Time frame: 24 months
Parents' Quality of Life
Parents' quality of life will also be measured with an adapted version of the KIDSCREEN survey subscale for Feelings.
Time frame: 12 months
Parents' Quality of Life
Parents' quality of life will also be measured with an adapted version of the KIDSCREEN survey subscale for Feelings.
Time frame: 24 months
Parents' Perceived Emotional and Physical Health
Parents' perceived health, energy, and fatigue will be assessed with short forms of the Patient Reported Outcomes Measurement Information System (PROMIS).
Time frame: Baseline
Parents' Perceived Emotional and Physical Health
Parents' perceived health, energy, and fatigue will be assessed with short forms of the Patient Reported Outcomes Measurement Information System (PROMIS).
Time frame: 6 months
Parents' Perceived Emotional and Physical Health
Parents' perceived health, energy, and fatigue will be assessed with short forms of the Patient Reported Outcomes Measurement Information System (PROMIS).
Time frame: 12 months
Parents' Perceived Emotional and Physical Health
Parents' perceived health, energy, and fatigue will be assessed with short forms of the Patient Reported Outcomes Measurement Information System (PROMIS).
Time frame: 24 months
Effects of Child's Condition on Parents' Finances and Ability to Work
Financial Impact on Parents' will be measured using an Expense Diary survey created by the co-investigators.
Time frame: Baseline
Effects of Child's Condition on Parents' Finances and Ability to Work
Financial Impact on Parents' will be measured using an Expense Diary survey created by the co-investigators.
Time frame: 6 months
Effects of Child's Condition on Parents' Finances and Ability to Work
Financial Impact on Parents' will be measured using an Expense Diary survey created by the co-investigators.
Time frame: 12 months
Effects of Child's Condition on Parents' Finances and Ability to Work
Financial Impact on Parents' will be measured using an Expense Diary survey created by the co-investigators.
Time frame: 24 months
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.