Improving Disease Knowledge in Adolescents With Sickle Cell Disease

Not Applicable

Completed

• Conditions: Sickle Cell Disease; Quality of Life
• Interventions: Behavioral: Educational Booklet (BK); Other: Formal Counselling (CB)

• Registration Number: NCT01945073
• Lead Sponsor: The University of The West Indies

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.

Detailed Description

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 (SCU) in Jamaica. We also wish 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).

Our specific hypotheses are:

1. Important predictors of knowledge among adolescents with Sickle Cell Disease (SCD) are gender, age, education of the adolescent as well as of the parents, socioeconomic status, frequency of attendance at SCU, rural/urban residence, and disease severity.

2. The intervention involving training using an educational booklet specific to 'teens living with SCD' will improve knowledge among the adolescents

3. Adding 'individual Counselling' to the intervention will increase the benefits

4. Improvements in knowledge will translate to improvements in QOL and positive IPs.

Study Timeline

• Study Start: 2013-08
• Study First Submitted: 2013-09-10
• Study First Submitted QC: 2013-09-13
• Study First Posted: 2013-09-18
• Primary Completion: 2015-04
• Study Completion: 2015-04
• Status Verified: 2015-11
• Last Update Submitted: 2015-11-30
• Last Update Posted: 2015-12-02

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 150

Inclusion Criteria

• 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.

Exclusion Criteria

• adolescent with neurological disorders e.g. Cerebrovascular accidents or with physical or intellectual disabilities will be excluded.

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: FACTORIAL

Arm && Interventions

Group	Intervention	Description
Educational Booklet (BK)	Educational Booklet (BK)	Routine clinical care and educational booklet (BK) given
Educational Booklet and Counselling (CB)	Educational Booklet (BK)	Routine clinical care, aided by formal counselling and active discussions from the educational booklet (CB)
Educational Booklet and Counselling (CB)	Formal Counselling (CB)	Routine clinical care, aided by formal counselling and active discussions from the educational booklet (CB)

Primary Outcome Measures

Name	Time	Method
Change in Disease Knowledge	3, 6 and 12 months	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.

Secondary Outcome Measures

Name	Time	Method
Change in Quality of Life	3, 6 and 12 months
Change in Illness Perception	3, 6 and 12 months

Trial Locations

Locations (1)

Sickle Cell Unit, University of West Indies, Mona Campus; 🇯🇲 Kingston 7, Jamaica