Table 2.

Value elements rated as high priority by patient stakeholders in the stage 2 evaluation

>75% rated 12 elements as high priority	50–75% rated 20 elements as high priority	25–49% rated 9 elements as high priority	< 25% rated 4 elements as high priority
Tolerability	Length of treatment	Cultural barriers	Conflict with religious beliefs
Side effects	Maintain social activities	Stigma	Fear of rejection by family
Ability to maintain relationships with family	Support network	Sibling costs	Fear of rejection by society
Ability to work	Ability to relationships with peers	Pharmacy access to the medication
Impact on depression	Fatigue	Alternative treatments
Affordability	Impact on anxiety	Predictable healthcare needs
Long-term costs	Cost of treatment-related side effects	Consistency of care
Reimbursed care	Long-term effects on family	Age of onset
Available treatment	Relocation costs to be closer to patient	Intermediate/surrogate endpoints
Appropriateness of care	New therapeutic option
Provider willing to deliver care	System navigation
Explanation of treatment (risks & benefits)	Proximity to care location
	Treatment access in socially neglected populations
	Life EXPECTANCY
	Impact on education
	Impact on career
	Inability to plan
	Provider relationship & trust
	Care transitions
	Symptom importance