“…but when you do not account for the patient’s attitudes, beliefs, and behaviors it can derail the entire treatment plan leading to poor quality of care and patient outcomes,”
A myeloma diagnosis sucks. Fortunately, every now and then a study comes along that is much more illustrative, more applicable than all others. The cancer patients surveyed below clearly have had a lousy experience with conventional oncology. Which is why I have always believed in the need for long-term multiple myeloma survivors (me) helping newly diagnosed MM patients aka MM cancer coaching.
The odd thing is that MM cancer coaching isn’t rocket science. Newly diagnosed MM patients simply need someone to explain
- financial toxicity
- possible collateral damage aka side effects
- the risks and benefits of conventional MM therapies
- the risks and benefits of non-conventional MM therapies
- clinical trial participation from the patient perspective
Many other industries have figured out the “customer experience.” And the customer in this case, the patient, has real life and death choices to make. To add insult to injury multiple myeloma patients spend thousands of dollars to have a lousy customer experience.
I am both a multiple myeloma coach and a MM survivor who has lived through both aggressive conventional (FDA approved) surgery, radiation and chemotherapy as well as alternative cancer therapies and evidence-based, non-conventional therapies.
Have you been diagnosed with multiple myeloma? If so, what stage? What are your symptoms? Please scroll down the page, post a question or a comment and I will reply to you ASAP.
- Multiple Myeloma Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“The survey found that gaps in communication between patients and care teams about cost of care resulted in “financial toxicity” for people living with cancer…
Regarding quality of life, key findings from the report included:
- Only 39% of cancer survivors rate their overall health as “very good” or “excellent.”
- About 53% of cancer survivors are worried about the future and what lies ahead.
- About 47% of cancer survivors are at risk for clinical depression.
Regarding treatment decision-making, the report found:
- 93% rated quality of life as a very important factor when weighing treatment options.
- about 24% did not feel prepared to discuss treatment options with their doctor.
- Only 45% decided on treatment together with their care team.
Regarding side-effects and symptom management, the report concluded that:
- One in five reported that the healthcare team did not explain short-term side effects.
- Only 52% said they received guidance on long-term side effects of treatment.
- About 14% did not tell their care team about side effects and symptoms.
Regarding clinical trials, the report concluded:
- That 43% thought lack of transportation would prevent them from participating in a clinical trial.
- About 77% believed that insurance would not cover clinical trial costs.
- And 76% feared receiving a placebo in a cancer clinical trial.
On financial impact, the report found:
- More than one in 10 patients postponed filling prescriptions to reduce costs.
- About 73% did not talk about costs of treatment with a member of the care team.
- And 30% depleted their savings because of treatment costs.
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