Group shot of them in discussion
Members of the survey project team, (L to R) Elke Ruthig, Brooke Allemang, Kate Uchendu, Dorothy Ma and Dr. Richard Ward, are working to better meet the health literacy needs of a diverse patient population. (Photo: UHN)

Kate Uchendu, Nurse Practitioner, Red Blood Cell Disorders Program, is passionate about what she does, and says that her and her colleagues are always working to put the needs of patients first.

"We are constantly looking at ways to improve the care we provide," Kate says.

Most recently, under Kate's leadership, a team has been working to create a new Patient Education platform to better meet the health literacy needs of patients with red blood cell disorders. Last December, a health information needs assessment survey was shared with close to 1,000 patients with thalassemia and sickle cell disease.

The survey aims to help the team learn how patients prefer to receive information about their chronic illness and the priority they place on different aspects of their condition.

Ultimately, the information gathered will help providers understand the impact of chronic disease on patients' overall well-being and ability to cope and self-manage.

The project team, which is made of Dr. Richard Ward (Hematologist), Elke Ruthig (Manager, Patient & Caregiver Education, Toronto General Hospital), Brooke Allemang (Transition navigator), Dorothy Ma (Admin Assistant) and Mitsu Patel (Registered Nurse), is working to create a new Patient Education platform that meets the needs of their diverse patient population.

Health literacy is currently a challenge for many red blood cell disorders patients.

"Hemoglobin disorders can be difficult for clinicians not familiar with the conditions to understand," Kate says. "Often patients with the same hemoglobin disorder are affected very differently even when those patients are twins.

"It is therefore not uncommon that there is a gap in the knowledge of patients and family members."

Need information that's 'appropriate and relevant' to patients

Dr. Ward says, patients "struggle to cope with living with a complex, lifelong multisystem medical condition on a daily basis. We also know from research that health literacy can have a dramatic positive impact on chronic disease management.

"It's therefore vitally important that we not only fully understand their health information needs, but make sure the delivery of that information is appropriate and relevant to our patients. If not, it simply won't be effective."

The survey looks to understand how an individual's illness might affect their work, school and family life.  It also examines other dimensions such as death, dying and spirituality.

"It is important for health care providers partnering with red blood cell disorders patients to be comprehensive when providing information," Elke says. "The results of this needs assessment will improve the development of high-quality educational resources specific to red blood cell disorders patients which will ultimately increase patient and caregiver engagement in care and improve the patient experience."

Survey results will be examined soon.

"We don't know what the platform will ultimately look like, but we know it will be completely designed with patients," Kate says. "It is a very exciting time for our program as we partner with our patient population to gain a better understanding of their unique health information needs."​

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