Improving Disease Knowledge in Adolescents With Sickle Cell Disease
KNOW-IT
An Educational Intervention to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease
1 other identifier
interventional
150
1 country
1
Brief Summary
Increased knowledge about an illness can increase self-management among those afflicted. In order to facilitate people with sickle cell disease living a longer and healthier life, they should be taught to manage their illness.An adolescent with a chronic illness has many unique challenges, in addition to maneuvering the turbulent adolescence period itself. It has been that better knowledge and more positive perceptions of their illness equate not only to better control of their illness but also better quality of life.Studies have also shown the benefits of self-management: when patients are responsible for managing their own illness, their clinical outcomes and quality of life improve and they become less dependent on health care services. In this study we aim to examine if knowledge, and any changes in knowledge, will each have any association with Quality of Life (QOL) and their perceptions of their illness (IP). We also seek to investigate the effects of an educational booklet, as well as an intervention including the educational booklet with formal counselling on their knowledge, QOL and IPs.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for not_applicable
Started Aug 2013
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
August 1, 2013
CompletedFirst Submitted
Initial submission to the registry
September 10, 2013
CompletedFirst Posted
Study publicly available on registry
September 18, 2013
CompletedPrimary Completion
Last participant's last visit for primary outcome
April 1, 2015
CompletedStudy Completion
Last participant's last visit for all outcomes
April 1, 2015
CompletedDecember 2, 2015
November 1, 2015
1.7 years
September 10, 2013
November 30, 2015
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Change in Disease Knowledge
In this inquiry, we wish to apply an educational intervention to determine if there are any improvements in disease knowledge as a result among adolescents attending the Sickle Cell Unit in Jamaica. We also wish to examine if knowledge, and any changes in knowledge, will each have any association with Quality of Life and their perceptions of their illness.
3, 6 and 12 months
Secondary Outcomes (2)
Change in Quality of Life
3, 6 and 12 months
Change in Illness Perception
3, 6 and 12 months
Other Outcomes (1)
Predictors of change in knowledge
3, 6 and 12 months
Study Arms (3)
Control (RC)
NO INTERVENTIONRoutine clinical care with no intervention
Educational Booklet (BK)
EXPERIMENTALRoutine clinical care and educational booklet (BK) given
Educational Booklet and Counselling (CB)
EXPERIMENTALRoutine clinical care, aided by formal counselling and active discussions from the educational booklet (CB)
Interventions
The information booklet provides age appropriate explanation about SCD: inheritance patterns for the trait and common sickle cell disorders in the Jamaican population. It includes manifestations, complications and the necessary preventive and treatment advice. In addition, issues that are common to adolescents including sexual activity, contraceptive use, drug usage, career advice and developmental changes common to persons with the disease are also discussed.
The study coordinator will have a face to face counselling session, lasting about 30 minutes, with the adolescent and/or caregiver. This will include the use of the educational booklet as an education tool, as well as a thorough discussion on the disease process; its manifestations, effects, and specific concerns during the adolescent period; as well as clarification of common myths and misconceptions about the disease.
Eligibility Criteria
You may qualify if:
- All adolescent patients, ages 13-19 years inclusive, with Sickle Cell Disease that attend the Sickle Cell Unit at University of the West Indies, Mona Campus will be eligible for the study and hence will be asked to participate.
You may not qualify if:
- adolescent with neurological disorders e.g. Cerebrovascular accidents or with physical or intellectual disabilities will be excluded.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Sickle Cell Unit, University of West Indies, Mona Campus
Kingston, Jamaica
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Monika R Parshad-Asnani, MBBS MSc DM
Sickle Cell Unit, TMRI, UWI
- STUDY DIRECTOR
Jennifer Knight-Madden, MBBS PhD
Sickle Cell Unit, TMRI, UWI
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- RANDOMIZED
- Masking
- NONE
- Intervention Model
- FACTORIAL
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Research Fellow
Study Record Dates
First Submitted
September 10, 2013
First Posted
September 18, 2013
Study Start
August 1, 2013
Primary Completion
April 1, 2015
Study Completion
April 1, 2015
Last Updated
December 2, 2015
Record last verified: 2015-11