An IBD Transition Tool: Patients’ and Families’ Perspective Transition tool... · An IBD...
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An IBD Transition Tool: Patients’ and Families’ Perspective Karen Frost, Geraldine Cullen-Dean, Miriam Granger, Eric Benchimol, Miriam Kaufman, Shaun Barrett, Krista Uusoue, Anne Griffiths Transition is part of normal, healthy development and occurs across the life span. For children and adolescents, optimal transitions involves learning skills such as responsibility and how to manage their illness. The philosophy behind this is to promote skills in children and youth that will assist them to successfully manage their health care now and in the future. A major component of transition preparation is assisting adolescents and their families to incorporate age appropriate tasks into the daily management of their condition. Using the shared management approach, the idea is that a young person will be well on their way towards self management by the time they reach adolescence; beginning early in a child's life is key. Background Methods Aims Results Methods 1. To help families visualize their child development in many domains of life including Parenting, Social, Self Care, Education and Health by developing an IBD- Specific Timeline Tool. 2. This tool will provide parents and patients guidance in helping their young adults develop independence across a continuum. 3. To evaluate families’ perception of the timeline’s usefulness by means of a survey Prospective enrollment of parents with children diagnosed with IBD aged birth to 18 years old. Diagnosis must be made >3 months earlier who are followed at SickKids Hospital’s IBD Program. The tool used is the Good2Go IBD Timeline developed by a team of nurses, physicians, social worker and dietitian. The survey involved the mailing of the IBD TIMELINE SURVEY questionnaire and a self-addressed return envelope to 350 patient families in our IBD Program. The questionnaire consisted primarily of 7 questions with which the patients or guardian were asked to indicate levels of agreement or disagreement, with opportunities to comment on some questions. The statements focused on three main topics: Usefulness of the tool; areas of the transition tool they did not expect; and lifestyle changes they hope to make based on the tool. Of the 350 patient families invited, a total of 108 (31%) completed and returned the questionnaire. Data collection is by means of descriptive research using a survey method answered by either parents or patients or both. Sixty two percent of the responses were from male patients’ families, and 39 percent female. The average age of patients is 13.35 years old. The average years of diagnosis is 3.4 years. Fifty percent of the questionnaires were completed by patients themselves. The other 50% were completed by either the patients’ mother, father or together. See Chart 1. Ninety percent of the sample indicated that the timeline was useful and that the information provided relate to them and their family. When asked which areas were most helpful to the sample, a common theme between parents and parents were found, in that 65 % indicated that the Self Care category is most useful; next to Medical and Education categories (Table I). 0 10 20 30 40 50 60 70 Parenting Social Self Care Education Medical CATEGORIES Table 1: Combined parent/patient response on the Most Helpful Areas Patient 50% Mother 39% Father 6% Patient and Father 1% Patient and Mother 4% Chart 1: Who Evaluation Was Completed By Twenty four percent of the respondents indicated that there were areas they did not expect, with the top three illustrated in Chart 2. Fifty one percent hope to change their lifestyle based on this tool, with the top three illustrated in Chart 3. . Eleven percent feel that these are things they already know and would not refer to the timeline tool again, while 73% would keep this as an important reference. See Chart 4. Conclusion It can be concluded that patients and families find this tool a useful resource as their children develop across the health transition continuum. The area of Self-Care is a common area where both patients and families have a degree of knowledge-deficit. This also demonstrated lack of knowledge in many resources such as Trillium Drug Plan, MyHealth Passport, and ability to participate in research. The IBD Transition Tool is a useful tool that should be included in each new patient package at the time of initial diagnosis and education. Yes 24% No 74% No Response 2% Chart 2: Was there anything included in the timeline that you didn't expect? Top three areas patients and families did not expect in the timeline: #1 Creation of MyHealth Passport #2 Availability of Trillium Drug Plan #3 Encouragement for increased independence in terms of medical appointments and medication Yes 52% No 44% No response 4% Chart 3: Was there anything you would change as a result of the timeline? Top three areas of lifestyle patients and families hope to change: #1 Gradual release of responsibility from parent to child #2 Increased adherence to medication #3 Participation in research and community events 38% 35% 11% 16% Chart 4: Will You Refer to the Timeline Again? Yes Yes, somewhat No Not sure (%)
Transcript of An IBD Transition Tool: Patients’ and Families’ Perspective Transition tool... · An IBD...
An IBD Transition Tool: Patients’ and Families’ PerspectiveKaren Frost, Geraldine Cullen-Dean, Miriam Granger, Eric Benchimol, Miriam Kaufman, Shaun Barrett, Krista Uusoue, Anne Griffiths
Transition is part of normal, healthy development and occurs across the life span. For children and adolescents, optimal transitions involves learning skills such as responsibility and how to manage their illness. The philosophy behind this is to promote skills in children and youth that will assist them to successfully manage their health care now and in the future.
A major component of transition preparation is assisting adolescents and their families to incorporate age appropriate tasks into the daily management of their condition. Using the shared management approach, the idea is that a young person will be well on their way towards self management by the time they reach adolescence; beginning early in a child's life is key.
Background
Methods
Aims Results
Methods
1. To help families visualize their child development in many domains of life including Parenting, Social, Self Care, Education and Health by developing an IBD-Specific Timeline Tool.
2. This tool will provide parents and patients guidance in helping their young adults develop independence across a continuum.
3. To evaluate families’ perception of the timeline’s usefulness by means of a survey
Prospective enrollment of parents with children diagnosed with IBD aged birth to 18 years old. Diagnosis must be made >3 months earlier who are followed at SickKids Hospital’s IBD Program.The tool used is the Good2Go IBD Timeline developed by a team of nurses, physicians, social worker and dietitian.The survey involved the mailing of the IBD TIMELINE SURVEY questionnaire and a self-addressed return envelope to 350 patient families in our IBD Program. The questionnaire consisted primarily of 7 questions with which the patients or guardian were asked to indicate levels of agreement or disagreement, with opportunities to comment on some questions. The statements focused on three main topics: Usefulness of the tool; areas of the transition tool they did not expect; and lifestyle changes they hope to make based on the tool. Of the 350 patient families invited, a total of 108 (31%) completed and returned the questionnaire.Data collection is by means of descriptive research using a survey method answered by either parents or patients or both.
Sixty two percent of the responses were from male patients’ families, and 39 percent female. The average age of patients is 13.35 years old. The average years of diagnosis is 3.4 years. Fifty percent of the questionnaires were completed by patients themselves. The other 50% were completed by either the patients’ mother, father or together. See Chart 1.
Ninety percent of the sample indicated that the timeline was useful and that the information provided relate to them and their family.When asked which areas were most helpful to the sample, a common theme between parents and parents were found, in that 65 % indicated that the Self Care category is most useful; next to Medical and Education categories (Table I).
0 10 20 30 40 50 60 70
Parenting
Social
Self Care
Education
Medical
CAT
EGO
RIE
S
Table 1: Combined parent/patient response on theMost Helpful Areas
Patient50%Mother
39%
Father6%
Patient and Father1%
Patient and Mother4%
Chart 1: Who Evaluation Was Completed By
Twenty four percent of the respondents indicated that there were areas they did not expect, with the top three illustrated in Chart 2.
Fifty one percent hope to change their lifestyle based on this tool, with the top three illustrated in Chart 3..
Eleven percent feel that these are things they already know and would not refer to the timeline tool again, while 73% would keep this as an important reference. See Chart 4.
Conclusion
It can be concluded that patients and families find this tool a useful resource as their children develop across the health transition continuum. The area of Self-Care is a common area where both patients and families have a degree of knowledge-deficit. This also demonstrated lack of knowledge in many resources such as Trillium Drug Plan, MyHealth Passport, and ability to participate in research.The IBD Transition Tool is a useful tool that should be included in each new patient package at the time of initial diagnosis and education.
Yes24%
No74%
No Response2%
Chart 2: Was there anything included in the timeline that you didn't expect?
Top three areas patients and families did not expect in the timeline:
#1 Creation of MyHealth Passport
#2 Availability of Trillium Drug Plan
#3 Encouragement for increased independence in terms of medical appointments and medication
Yes52%
No44%
No response
4%
Chart 3: Was there anything you would change as a result of the timeline?
Top three areas of lifestyle patients and families hope to change:
#1 Gradual release of responsibility from parent to child
#2 Increased adherence to medication
#3 Participation in research and community events
38%
35%
11% 16%
Chart 4: Will You Refer to the Timeline Again?
Yes
Yes, somewhat
No
Not sure
(%)
