Living with MDS - What Patients and Caregivers Really Need

Living with myelodysplastic neoplasms (MDS) presents unique challenges, especially since it mainly affects older adults. That's why doctors and researchers focus heavily on making sure patients can maintain the best possible quality of life during treatment. A new Italian study has taken a deep dive into understanding what patients and their caregivers go through - and what they need most.

The Study at a Glance

An Italian patient advocacy group (AIPaSiM) wanted to get the full picture, so they created a detailed survey that ran for almost a year. They heard from:

• 259 patients (average age 73)
• 71 family caregivers
• Used both online and paper surveys to make sure everyone could participate

What made this study particularly interesting was its timing - nearly a third of the patients (28%) had been living with MDS for more than 5 years, giving them plenty of experience to share.

Daily Life with MDS

The study revealed some eye-opening facts about how MDS affects everyday life. While most patients were retired, the impact on those still working was significant:

• 23% were still in the workforce
• 20% had to make major changes to their work life, including:
  • Switching to different jobs
  • Reducing their hours
  • Taking early retirement

Treatment was a big part of life for most participants, with 70% actively receiving care. Surprisingly, only 15% felt their treatment severely disrupted their daily routine - though other challenges soon became clear.

The Hospital Journey: A Major Challenge

Getting to and from treatment turned out to be one of the biggest hurdles. Here's what patients shared:

The journey itself was tough:

• • About 1 in 5 patients lived far from their treatment center
  • Almost half needed someone to come with them to appointments
  • 77% said these trips noticeably reduced their quality of life

Once at the hospital:

• • 40% found the waiting times unacceptable
  • For transfusion-dependent patients (42% of the group), more frequent visits meant lower quality of life
  • Many expressed interest in home treatment options, though only 2% currently received them

Communication: Room for Improvement

The study found some gaps in how medical information was shared:

Many patients felt left in the dark:

• • 18% didn't get a complete explanation of their diagnosis
  • Almost 4 in 10 weren't sure they fully understood their condition
  • About a quarter weren't satisfied with how their treatment plan was explained

On the bright side:

• • More than half preferred telemedicine options
  • This was especially true for those who struggled with hospital visits

The Hidden Heroes: Family Caregivers

Behind almost every patient was a family member stepping up to help:

• 94% of caregivers were family members
• 40% struggled to balance caregiving with their own work
• Nearly a third had to change jobs to manage their caregiving duties

What Does This Mean for the Future?

This study shows us that while we've made progress in treating MDS, there's still work to be done. Patients and their families need:

• Better ways to get treatment closer to home
• Clearer communication about their condition and treatment options
• More support for both patients and caregivers
• Solutions that reduce the need for frequent hospital visits

The good news? By identifying these challenges, healthcare providers can now work on solutions that make life better for both patients and their caregivers. Whether it's expanding home care options, improving hospital scheduling, or providing better support systems, every improvement makes a difference in patients' lives.

Your Voice Matters: Help Shape the Future of MDS Care

Living with MDS impacts not just patients, but entire families. While this Italian study has revealed crucial insights, we need to hear more voices - including yours. Every experience shared helps create a clearer picture of what patients and caregivers truly need.

Join thousands of others in the MDS community by sharing your experience through HealthTree's ongoing research initiatives. It's simple to get started:

1. Create your free HealthTree account here
2. Complete your profile
3. Participate in current surveys
4. Stay updated on new research opportunities

Your voice can help shape better treatments, support systems, and care strategies for the entire MDS community. 

Create a free HealthTree Account

Source: 

• Myelodysplastic Neoplasms Patients' and Caregivers' Unmet Needs and Their Impact on Their Quality of Life and Symptoms