Clinical trial NCT01945073: Improving Disease Knowledge in Adolescents With Sickle Cell Disease
Official title: An Educational Intervention to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Sickle Cell Disease
Quality of Life
Keywords: Educational intervention
Formal Counselling
Knowledge
Illness Perception
Lead sponsor: The University of The West Indies
Sponsor class: OTHER
First posted: 2013-09-18
Enrollment: 150
Sex: ALL
Minimum age (years): 13
Maximum age (years): 19
Standard ages: CHILD
ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: FACTORIAL

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.

Eligibility criteria: 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.

Primary outcomes:
measure: Change in Disease Knowledge
timeFrame: 3, 6 and 12 months
Secondary outcomes:
measure: Change in Quality of Life
timeFrame: 3, 6 and 12 months
measure: Change in Illness Perception
timeFrame: 3, 6 and 12 months
Other outcomes:
measure: Predictors of change in knowledge
timeFrame: 3, 6 and 12 months
Locations:
city: Kingston 7
country: Jamaica
facility: Sickle Cell Unit, University of West Indies, Mona Campus
Study officials:
affiliation: Sickle Cell Unit, TMRI, UWI
name: Monika R Parshad-Asnani, MBBS MSc DM
role: PRINCIPAL_INVESTIGATOR
affiliation: Sickle Cell Unit, TMRI, UWI
name: Jennifer Knight-Madden, MBBS PhD
role: STUDY_DIRECTOR
References: