Insights into the disease burden of myelodysplastic syndrome
How does a myelodysplastic syndrome diagnosis affect quality of life?
To help answer this question, Inspire partnered with a client to conduct an online survey of people with myelodysplastic syndrome (MDS) or leukemia who belong to the Inspire Leukemia Support Community. Inspire then contextualized the findings with personal experiences from a patient and a physician. The results of the study were published in Patient Related Outcome Measures, a peer-reviewed scientific and medical journal.
Project focus: Understanding the disease burden of MDS on patients
The focus of the partnership was to understand the burden of disease on patients living with MDS and identify unmet needs that would improve the physician-patient dynamic.
The client chose to work with Inspire because of our broad access to fully-consented, re-contactable patients. These patients join Inspire to find information about their disease, research treatments, and get emotional support from other patients and caregivers.
Inspire solution: Combine an online survey with personal patient and physician experiences
Inspire conducted an online survey of patients and caregivers living with MDS or leukemia who belonged to the Inspire Leukemia Support Community. Of the 30 survey respondents, four had MDS and one person was a caregiver for a loved one with MDS. Inspire put these five MDS responses into context by interweaving personal experiences shared by a patient with MDS and a doctor who treats MDS.
Benefit to the client: Identify ways to improve physician-patient communication and ease disease burden
Together with Inspire, the client was able to identify opportunities to improve physician-patient communication, with the goal of easing disease burden and improving quality of life for patients.
The client gained clearer insights into:
The importance of improved, ongoing physician communication in helping patients feel more in control of the disease, treatments, and their lives
An incongruence between what patients want from treatments (a slowing of symptoms and disease progression) and what doctors think patients want (symptom improvement and prevention of blood clots and strokes)
The need for patient-driven communication with physicians about treatment goals, and the effects of the disease and treatment on quality of life
The impact of MDS, and the uncertainty of the prognosis, on patient and caregiver mental health
A lack of understanding among patients about MDS, which adds to anxiety and fear and may affect informed treatment decision-making
Types of sources patients and caregivers use to learn about MDS
The impact of symptoms, treatments, and treatment side effects on quality of life, time spent with family and friends, and work life
Gaps in physician communication about disease progression, prognosis, treatment limitations, and end-of-life care
The need for raising patient awareness about clinical trials, and improved physician-patient communication during trials