Table 3 Inclusion of patient insights into CDR process
Category | Description | Patient insights included in: | |||
|---|---|---|---|---|---|
Patient summary | CDR protocol | Drug trials | CDEC Recs. | ||
Tier 1: Health status achieved or retained | |||||
Symptom relief | Improvement of specific symptoms, such as fatigue; seizure frequency; attack severity; ability to breathe, to eat, sleep, or move. | 25 | 21 | 22 | 17 |
Health-related quality of life | General improvement in quality of life, as measured using standard general or disease-specific quality-of-life scales. | 18 | 18 | 11 | 13 |
Target root cause | Treatment that targets the root cause of the condition, provides a cure, or extends beyond symptom control. | 7 | 7 | 6 | 6 |
Long life | Increased survival, including slower disease progression, sustained remission, and fewer disease-related deaths. | 5 | 5 | 3 | 5 |
Tier 1 subtotal | 55 | 51 | 42 | 41 | |
Tier 2: Progress of recovery | |||||
Fewer side effects of treatment | Side effects of the treatment anticipated to be fewer, or less severe than current medications. | 16 | 13 | 5 | 7 |
Ease of adherence | Ability and willingness to continue taking a medication. Can be influenced by number of pills, ability to self-inject, or contraindications while on the medication. | 11 | 7 | 2 | 4 |
Alternative treatment | Alternatives needed if there is wide variability in individual response to treatment or if treatment efficacy wanes over time. | 4 | 3 | 3 | 4 |
Fewer treatment supports | Reduction in the need or use of rescue medication or supplementary therapies to relieve symptoms. | 3 | 2 | 1 | 0 |
Treatment duration | Shorter duration of therapy and/or recovery than current therapies. | 3 | 1 | 1 | 1 |
Avoid hospitalization | Avoidance of surgery and other procedures requiring hospitalization of the patient. | 6 | 6 | 3 | 3 |
Cost | Reduction in the cost borne by individual patients in accessing treatment. | 6 | 0 | 0 | 3 |
Tier 2 subtotal | 49 | 32 | 15 | 22 | |
Tier 3: Sustainability of health | |||||
Psychosocial quality of life | Mental, physical, and emotional ability to engage in daily life activities such as work, meeting friends, and caring for children. | 7 | 4 | 2 | 1 |
Avoid further disease | Prevent disease transmission or subsequent illness, such as infection, infertility, blindness, or related cancers. | 6 | 2 | 2 | 3 |
Independence | No longer dependent upon a caregiver to receive treatment or for basic self-care. | 2 | 0 | 0 | 0 |
Tier 3 Subtotal | 15 | 6 | 4 | 4 | |
Totals | 119 | 89 | 61 | 67 | |