RESEARCH PROPOSAL

Easha Qasba
Independent Research II
2016-2017

Title: Advocating Adherence for Patients With Sickle Cell Disease

Introduction and Overview of Research:

The researcher is seeking to answer the question: How can researchers increase the
use of available treatment protocols in order to better the quality of life for pediatric sickle cell
patients? Sickle Cell Disease is a genetic blood disorder which begins by mutating the
hemoglobin. While this in itself is not fatal, the disease leads to organ damage due to a lack of
oxygen which occurs when the hemoglobin clots in vessels. Currently, there is no cure, but
there are treatments such as hydroxyurea therapy and penicillin prophylaxis. These have been
proven to reduce the number of complications suffered by patients, but the adherence to the
treatment protocols is relatively low. Improving the adherence should improve the quality of life
which is the goal of this study.

Background and Rationale

Sickle Cell disease is a hereditary disease which primarily affects people of African
American and Middle Eastern descent. The disease is a recessive trait which requires both
parents to carry the gene in order for it to be passed down, but it still affects 1 in 12 African
Americans. The disease is characterized by abnormal hemoglobin which causes the red blood
cells to be deformed with little to no flexibility. This leads to blockages in the veins and arteries
which prevents oxygen from reaching the organs and muscles. The lack of oxygen causes
painful episodes known as pain crisis, and over time, the lack of oxygen can lead to major organ
damage. Furthermore, the red blood cells in people who suffer from Sickle Cell disease
hemolyze at a faster rate, so these patients also often suffer from anemia.
Sickle Cell disease was not a priority for research funding for several decades after its
discovery in the mid 1900s since it is a disease that primarily affects the African American
population. After the 1960s, however, more funds were dedicated to the research and treatment
of Sickle Cell disease. There are now various treatments which have been proven to extend life
expectancy as well as quality of life for the children affected. Recent studies have been
conducted in order to determine the adherence to the various treatment protocols which
revealed that adherence is relatively low.
The various treatment protocols are useless without consistent adherence, and since the
majority of Sickle Cell patients are children, the burden falls to the parents. A greater level of
awareness, standardization, and adherence would greatly improve the quality of life and life
expectancy for Sickle Cell patients. This is what this study hopes to address.
Research Methodology:
Research Question : How can researchers increase the use of available treatment protocols in
order to better the quality of life for pediatric sickle cell patients?
Research Thesis: If the general public as well as the families of patients are given the
information,
resources, and support they need, then the adherence to detailed treatment
protocols will increase. This will also allow the American Society for
Hematology
to improve fundraising.

In order to support the research thesis, the researcher will use data from aquestionnaire
to determine the adherence to treatment protocol as well as the resultant quality of life.

Research Design Model:

The researcher is using meta-analysis in order to conduct both quantitative and
qualitative research since the data referring to adherence is numeric, but the quality of life is
subjective and qualitative. The variables will be the overall adherence ratings given by
physicians and caregivers. The dependent variable is the number of sickle cell disease related
health episodes experiences as well as the overall quality of life. This allows the researcher to
identify any correlation between adherence and quality of life.

Data Collection:
The original data collection was conducted using previously conducted experiments by
professionals within the field. Through the meta-analysis of earlier research, the researcher was
able to gain insight from different perspectives while minimizing the influence of their lack of
resources. One specific study conducted a year long investigation into the adherence of patients
and caregivers, from the perspective of physicians, caregivers, and the confirmation of a
pharmacy, to the prescribed treatment plan. They found a reasonable bias between the reports
of caregivers and physicians indicating the inherent bias of self-report studies. They found that,
with the patients with better adherence, they suffered fewer complications during the year.

Product Objectives:
The product being created by the researcher will be a fundraiser in order to raise
awareness for the disease among the general public, and contribute a donation to the American
Society for Hematology. By targeting the general public, the disease will become better known
amongst people it does not necessarily affect. Furthermore, their donations will go towards
research and treatment for Sickle Cell patients which is a worthwhile cause. The fundraiser
could gain attention through announcements, flyers, a table outside of the cafeteria, and
announcement at other schools and community centers.

Logistical Considerations:
In order to produce the necessary materials and conduct the fundraiser, paper for flyers
will be needed. An adult supervisor will be necessary for collecting funds and setting up the
fundraiser at the school. Media will be used to spread the word and news in order to gain
attention for the cause. Permission from school administration will also be necessary. A timeline
will be added that outlines the data collection, product development, and audience distribution.
Approval:

__________________________ ___________________________
_____________________
Student Signature G/T Resource Teacher Signature
Mentor/Advisor Signature

References:
List, using correct bibliographic citation, any sources you cited in-text.