Table 2.
Top-ranked Informational Needs Among Patients and Caregivers, Patient Consultants and Providers
| Rank | Patients and caregivers | Patient consultants | Providers |
|---|---|---|---|
| 1 | Lifestyle: Mobility | Lifestyle | Patients should know who to contact on the VAD team in emergencies |
| 2 | Lifestyle: Spending time with family/friends | Life expectancy without LVAD | Patients need to know their risk of re-hospitalization |
| 3 | Lifestyle: Overall feeling well-being | Caregiver lifestyle: Degree of impact and involvement, QoL | Patients understand the timelines of recovery process |
| 4 | Lifestyle: Maintaining activities and hobbies | Lifestyle: Mobility | Patients should know how the device functions |
| 5 | Technical: Effort needed for care of driveline | Overall feeling of well-being/QoL | Post-operative recovery is variable among patients |
| 6 | Lifestyle: Psychosocial/cognitive changes | Chances of rehospitalization due to driveline dysfunction | There is a risk of stroke |
| 7 | Complications: Likelihood of infections (average number, type, frequency, consequences) | Risks/complications | There is a risk of bleeding |
| 8 | Lifestyle: Overall activity restrictions | Possibility of heart repairing itself from VAD | There is a risk of infection |
| 9 | Lifestyle: Independence/control | Comparison of VAD to transplant | Patient should know the names of VAD coordinators, cardiology and surgical staff |
| 10 | Lifestyle: Medication (type, frequency) | Possibility of heart continuing to beat if VAD stops | Patients want survival data |
| 11 | Caregiver lifestyle: Degree of impact, involvement, quality of life | Changes in work life | Patients need to know about out-of-pocket expenses |
| 12 | Impacts on travel | Lifestyle: Maintaining activities and hobbies | Doctors and coordinators must deliver a unified message to patients |
| 13 | Prospect of being a burden | Travel | Patients should know what equipment they are responsible for |
| 14 | Difficulty/burden of carrying battery pack | Prospect of being a burden | Patients should be aware of lifestyle changes that come with the LVAD (e.g., dietary restrictions, activity limitations, traveling, avoidance of power tools, diuretics) |
| 15 | Surgery: Probability of death | Water activities | Patients need to be able to identify critical alarms |
Overlapping informational needs indicated in bold. VAD, ventricular assist device.