Lorna Warwick, the CEO of the Lymphoma Coalition (LC), discussed her organization’s research that was presented at ASH 2018.
LC is an umbrella organization of nonprofits including the CLL Society that help those with all different types of lymphomas.
They used their own and their members’ resources to solicit patients and caregivers to find out how important good information was to outcome.
- 6631 participants took part in the online survey from all over the world.
- Analysis merged the data between patient and caregiver surveys.
- 34% of respondents globally felt they had received adequate information, 45% somewhat adequate, and 21% inadequate information.
- Adequately informed respondents were more confident in determining the need for medical care vs. handling a health problem on their own (59%), compared to somewhat (35%), and inadequately (22%) informed respondents.
- They were also more confident in all the other aspects of their care that were surveyed, felt more in control, had more positive feelings about the process, and had better communication with their healthcare providers.
Lorna and I discussed the importance of the sources of information, specifically while the doctor is the number one source of information, patients are increasingly relying on websites such as ours and on nonprofits that support their cancer type. These sources also tend to stay consistent over the patient’s course of the cancer journey.
We both agreed that “Smart Patients Get Smart Care™”.
Here is a link to the abstract from the Lymphoma Coalition.
Here is a link to the CLL Society’s research also presented at ASH 2018 that covered similar topics.
Here is the interview.