Myeloma (Canada) PSP Engagement Summary

Gathering uncertainties

Methods used (e.g. survey, focus groups, interviews): survey

	Number	%
Total respondents (across all methods)	594	100
Total patients	339	57
Total caregivers	73	12
Total health and care professionals	27	5
Total other	15	3
Total not specified	140	24
Total number of original uncertainties submitted	3042	100
Original uncertainties in scope	2742	90
Original uncertainties out of scope	300	10

Interim prioritisation

Methods used (eg survey, focus groups, interviews): survey

	Number	%
Total number of indicative questions (answered & unanswered)	66	100
Number of verified answered questions	7	15
Number of verified unanswered questions	59	85
Number of verified unanswered questions included in the interim prioritisation	45
Total respondents (across all methods)	651	100
Total patients	442	68
Total carergivers	150	23
Total health and care professionals	35	5
Total other	22	3
Total not specified	2	0
Number of questions taken to final workshop	18

Final priority setting workshop

	Number	%
Total participants***	23	100
Total patients	8	35
Total caregivers	6	26
Total health and care professionals	7	30
Total caregivers/health care professionals	2	9

Notes:

Examples of “Other:” family members of people with myeloma (who did not identify as a caregiver), people with related disorders such as MGUS (a precursor to myeloma).

In the first survey the question about role (i.e., patient, caregiver, health professional) was at the end of the survey resulting in a large proportion of missing data this was corrected for the second survey.