Table 3 Consolidated impact conceptualization of patient experience with MDS, AML and CMML
Health-Related Quality of Life Impacts of Higher-Risk MDS, Low-Blast Count AML, and CMML | |||
|---|---|---|---|
PT | LIT | CLINa | |
Mobility | |||
Walking (e.g., problems walking long distances, walking in certain places, walking on unleveled ground, walking on stairs, unsteady gait) | ✓ | ✓ | ✓ |
Stay in bed/chair | ✓ | ||
Inability to move quickly (move slowly) | ✓ | ✓ | |
Exercising | ✓ | ✓ | |
Loss of coordination | ✓ | ||
Rising from sitting | ✓ | ||
Bending down | ✓ | ||
Lack of balance | ✓ | ||
Falling | ✓ | ||
Standing | ✓ | ||
Sleep | |||
Insomnia | ✓ | ✓ | |
Feeling sleepy | ✓ | ✓ | ✓ |
Waking from sleep | ✓ | ✓ | |
Sleep disturbances | ✓ | ✓ | |
Work/Finances | |||
Inability to carry out jobs | ✓ | ✓ | ✓ |
Time lost from work | ✓ | ✓ | |
Loss of employment | ✓ | ✓ | |
Treatment costs | ✓ | ✓ | |
Leisure | |||
Recreational activities (e.g., bowling, golfing, sporting events, fishing, bird watching) | ✓ | ✓ | ✓ |
Yardwork | ✓ | ||
Limited air travel | ✓ | ✓ | |
Watching television | ✓ | ||
Watching movies/theater | ✓ | ||
Taking extending vacations | ✓ | ✓ | |
Arts and crafts | ✓ | ||
Reading | ✓ | ||
Writing | ✓ | ||
Board games | ✓ | ||
Diet and nutrition | |||
Avoid dining out | ✓ | ||
Avoid certain foods | ✓ | ||
Psychological Impact | |||
Treatment burden | ✓ | ||
Low motivation | ✓ | ✓ | |
Anxiety | ✓ | ✓ | |
Worry | ✓ | ✓ | |
Feeling discouraged | ✓ | ||
Sadness | ✓ | ||
Increased sense of awareness | ✓ | ✓ | |
Guilt | ✓ | ||
Depression | ✓ | ✓ | |
Anger | ✓ | ✓ | |
Frustration | ✓ | ✓ | |
Irritability | ✓ | ||
Loss of confidence | ✓ | ||
Distress | ✓ | ||
Feeling overwhelmed | ✓ | ||
Stress | ✓ | ||
Strengthening pre-existing faith | ✓ | ||
New-found appreciation | ✓ | ||
Struggle to find meaning in one’s illness | ✓ | ||
Feeling uncertainty | ✓ | ||
Bored | ✓ | ||
Fear | ✓ | ✓ | |
Social limitation | |||
Isolation | ✓ | ✓ | ✓ |
Wearing protective masks | ✓ | ✓ | |
Exposure to/ interaction with children/ grandchildren | ✓ | ✓ | ✓ |
Relationships | ✓ | ✓ | ✓ |
Sex life | ✓ | ||
Attendance at parties/celebrations | ✓ | ||
Restricting visits from sick people | ✓ | ✓ | ✓ |
Attending church | ✓ | ||
Inability to maintain roles | ✓ | ✓ | |
Activities and daily living | |||
Shopping | ✓ | ||
Childcare | ✓ | ✓ | |
Household chores | ✓ | ✓ | ✓ |
Caring for others | ✓ | ✓ | |
Driving | ✓ | ||
Grooming | ✓ | ||
Showering/bathing | ✓ | ||
Need supervision bathing | ✓ | ||
Getting dressed | ✓ | ||
Traveling to hospital | ✓ | ||