Table 1.

Missing content by HRQoL instrument

Missing in all instruments

Identity formation

Matured faster

Obligation to take care of their body

Obligation to be valuable

Survivor guilt

Desire for autonomy

Changed outlook on death (not afraid)

Missed opportunities/unfinished or unresolved issues

Make efforts to hide cancer/be ‘normal’

Need for transitional/disability resources

Overprotective parents

Treated as if they still have cancer

Difficult to disclose/trust others’ willingness to keep friendship

Fear of burdening others

Worry about/have difficulties forming romantic relationships

Specific concerns related to scars

Worried children will get cancer

Fear/pain creates reluctance to have children

Concerned family will resent their poor health/limited functioning

Worried about fertility status

Missing in two instruments: QLACS/SF-36

Lost faith in medicine due to late effects

Sufficiency of social support

Eating/sleeping fluctuations

Feelings of missing out (in present)

Religion helped cope

Desire for control

Missing in two instruments: QOL-CS/SF-36

Worry about family genetics

Insurance

Feel like shouldn’t complain about physical and psychological difficulties in survivorship

Worry about death

Felt like couldn’t ask Drs. Questions

Have different perspective on “bad” QOL

Missing in one instrument: QLACS

Accommodating employers

Fear QOL will worsen

Missing in one instrument: SF-36

Worry about recurrence

Feel a sense of purpose/appreciation after survival

Struggle with intimacy/sexuality

Financial worry/burden

Effects on concentration/memory