Table 2.
Reviewed list of provisional outcomes per domain and voting results
|
COS of care domains and provisional outcomes |
Care voting round 1 (n = 22) |
Care voting round 2 (n = 30) |
Research voting round 1 (n = 22) |
Research voting round 2 (n = 31) |
|---|---|---|---|---|
| 1. Anatomy of skin | ||||
| Satellite naevi number | 21 (95) | 26 (87) | 21 (95) | 30 (97) |
| Colour of the CMN | 20 (91) | 22 (73) | 19 (86) | 23 (74) |
| Texture of the CMN | 20 (91) | 25 (83) | 19 (86) | 24 (77) |
| Size of CMN | 20 (91) | 28 (93) | 19 (86) | 25 (81) |
| Hairiness of the CMN | 19 (86) | 17 (57) | 19 (86) | 17 (55) |
| 2a. Quality of life | ||||
| Emotional distress | 21 (95) | 26 (87) | 18 (82) | 24 (77) |
| Body image | 12 (55) | 12 (40) | 10 (45) | 8 (26) |
| Perceived stigmatization | 10 (45) | 3 (10) | 8 (36) | 1 (3) |
| Ability to cope | 9 (41) | 2 (7) | 6 (27) | 2 (6) |
| Social relations: satisfaction with participation in social activities | 14 (64) | 9 (30) | NA | NA |
| Social relations: ability to participate in social roles and activities | 14 (64) | 4 (13) | NA | NA |
| General physical functioning | 15 (68) | 9 (30) | NA | NA |
| 2b. Quality of life of family: delivery of care | ||||
| Satisfied with treatment | 15 (68) | 17 (57) | 15 (68) | 12 (39) |
| 2c. Quality of life of family: family function | ||||
| Acceptance of parents/family members of having a child/family member with CMN | 7 (32) | 3 (10) | NA | NA |
| 3. Neoplasms (cancer) | ||||
| Presence of melanoma | 22 (100) | 29 (97) | 21 (95) | 31 (100) |
| Presence of other malignancy | 19 (86) | 16 (53) | 19 (86) | 18 (58) |
| 4. Nervous system | ||||
| Neurological symptoms and signs | 21 (95) | 28 (93) | 20 (91) | 29 (94) |
| Neuroimaging findings (documented/measured when neuroimaging is performed) | 17 (77) | 16 (53) | 18 (82) | 19 (61) |
| Brain complications due to melanosis, melanoma or metastasis | 10 (45) | 7 (23) | 8 (36) | 6 (19) |
| 5. General adverse events (problems) | ||||
| Wound problems of the CMN (after treatment and when spontaneous wounds of the CMN occur) | 20 (91) | 25 (83) | 20/21 (95) | 24 (77) |
| Scar problems | 20 (91) | 24 (80) | 20/21 (95) | 23 (74) |
| Anatomical deformation | 19 (86) | 19 (63) | 19/21 (90) | 18 (58) |
| 6. Pathology | ||||
| Histological characteristics (documented/measured when skin removal is performed) | NA | NA | 15 (68) | 20 (65) |
| Molecular characteristics (documented/measured when available) (outcome proposed during consensus meeting) | NA | NA | NA | 22 (71) |
Data are n (%). Provisional list of outcomes reviewed by the OCOMEN team and relevant stakeholders and the results of voting after the first and second voting round. Outcome included in the core domain set are presented in bold. One participant did not vote for the care setting in the second round. CMN, congenital melanocytic naevi; NA, not applicable.