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| Name | Class |
|---|---|
| Children's Hospital of Eastern Ontario | OTHER |
| London Health Sciences Centre | OTHER |
| Hamilton Health Sciences Corporation | OTHER |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention Group | Experimental | In addition to standard medical care, participants will be enrolled to be seen as soon as possible in a complex care clinic as part of the CCKO initiative. |
|
| Wait-list Group | No Intervention | The control group will receive usual care, but will be wait-listed for 1 year to be seen in a complex care clinic as part of the CCKO initiative. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Complex care clinic as part of the CCKO initiative | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | 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. | 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. | 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. | 24 months |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | Baseline |
| Child quality of life & overall emotional health |
| Measure | Description | Time Frame |
|---|---|---|
| Health systems outcomes | The investigators will link the patient-reported evaluation of the CCKO initiative with encoded health administrative data housed at ICES for consenting participants. | Baseline |
| Health systems outcomes |
Inclusion Criteria (Meets at least ONE criterion from EACH of the following four conditions):
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Eyal Cohen, MD, MSc | The Hospital for Sick Children | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hamilton Health Sciences | Hamilton | Ontario | L8N 3Z5 | Canada | ||
| London Health Sciences Centre |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 39382077 | Derived | Lalji R, Koh L, Francis A, Khalid R, Guha C, Johnson DW, Wong G. Patient navigator programmes for children and adolescents with chronic diseases. Cochrane Database Syst Rev. 2024 Oct 9;10(10):CD014688. doi: 10.1002/14651858.CD014688.pub2. | |
| 36939728 | Derived | Cohen E, Quartarone S, Orkin J, Moretti ME, Emdin A, Guttmann A, Willan AR, Major N, Lim A, Diaz S, Osqui L, Soscia J, Fu L, Gandhi S, Heath A, Fayed N. Effectiveness of Structured Care Coordination for Children With Medical Complexity: The Complex Care for Kids Ontario (CCKO) Randomized Clinical Trial. JAMA Pediatr. 2023 May 1;177(5):461-471. doi: 10.1001/jamapediatrics.2023.0115. |
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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. |
| 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. | 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. | 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). | 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). | 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). | 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). | 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. | Baseline |
| Parents' Quality of Life | Parents' quality of life will also be measured with an adapted version of the KIDSCREEN survey subscale for Feelings. | 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. | 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. | 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. | 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. | 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. | 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. | 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). | 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). | 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). | 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). | 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. | 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. | 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. | 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. | 24 months |
The investigators will link the patient-reported evaluation of the CCKO initiative with encoded health administrative data housed at ICES for consenting participants.
| 6 months |
| Health systems outcomes | The investigators will link the patient-reported evaluation of the CCKO initiative with encoded health administrative data housed at ICES for consenting participants. | 12 months |
| Health systems outcomes | The investigators will link the patient-reported evaluation of the CCKO initiative with encoded health administrative data housed at ICES for consenting participants. | 24 months |
| London |
| Ontario |
| N6A 5A5 |
| Canada |
| Children's Hospital of Eastern Ontario | Ottawa | Ontario | K1H 8L1 | Canada |
| The Hospital for Sick Children | Toronto | Ontario | M5G 1X8 | Canada |
| 31375613 | Derived | Orkin J, Chan CY, Fayed N, Lin JLL, Major N, Lim A, Peebles ER, Moretti ME, Soscia J, Sultan R, Willan AR, Offringa M, Guttmann A, Bartlett L, Kanani R, Culbert E, Hardy-Brown K, Gordon M, Perlmutar M, Cohen E. Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity. BMJ Open. 2019 Aug 1;9(8):e028121. doi: 10.1136/bmjopen-2018-028121. |