- Both ATTRv-CM and ATTRwt-CM are associated with markedly poor QOL at the time of diagnosis, and the direction of change of QOL scores was overwhelmingly negative
- Investigations into the QOL of people living with ATTR typically employ approaches utilizing validated quantitative instruments, and have reported a lower QOL vs. the general population and to people living with other long-term, chronic diseases
- However, scales or PROMs for ATTR amyloidosis would be useful to better characterize newly diagnosed patients, and assess disease progression and Tx response, as no specific tools for QoL assessment in ATTR amyloidosis currently exist
Physical Impact/Impact on Activities of Daily Living:
- Physical impact is substantial and evolves throughout the patient journey; every stage poses different challenges; patients never return to normal and must give up many (in some cases all) activities they once used to love; “new normal” can be physically extremely challenging for many with many simple activities of daily life becoming impossible for them
- “If there's any hills, you get very breathless. You can't dance like you used to. You have to cope with that. I mean, that's a limitation that won't go away.”
- Patients are constantly challenged emotionally by the disease and implications on daily life; impact can vary over time, and amongst patients; some days are good, others bad, some patients experience DEPRESSION and/or ANXIETY
- “What a change of life for my wife and myself. I had lost my independence. I needed help with almost everything I did. The physical and mental tiredness we all experienced was huge, the extent of which cannot be underestimated.”
- UNCERTAINTY of a life-threatening illness causes FEAR and significant emotional stress on patients and caregivers; others gain strength from their predicament and use it as an opportunity to live LIFE TO THE FULLEST
- “Not knowing. Not knowing where I am on the path. Not knowing how things will pan out.”
- “I try to pull myself out of it, take a deep breath and let that subside and then try to be positive about the next step.”
- Patients may be unable to participate in activities they used to enjoy
- He “becomes easily short of breath, even from a brief stroll or a walk up the stairs and can’t participate in many family activities he once loved, such as camping.”
- Family members and caregivers are deeply affected, financially, emotionally, and physically
- “My wife had a doubling of her workload as well as dealing with the huge concern of whether I would survive. Our son had to step in and assist with driving and some shopping.”
- An increasing sense of loss: as more things seem to be taken away from patients, it can feel like loss on top of more loss
- Finding support can change perspective: patients report that seeking support from other patients, family, and friends can change their perspective on their condition and give them a more positive outlook