Table 4 Top 10 aspects mentioned most often by patients and carers as important in patients’ HRQoL

Family^a

Family^a

Family^a

Family^a

Capability^a

Good care^a

Fear^a

Worry^a

Good medicines^a

No AEs^a

Finances^b

Enjoy life

Normal life

Normal life^a

Pain free^a

Normal life^b

Capability^b

Therapy burden

Capability^b

Drug effectiveness^b

Support^b

Good doctors^b

Counselling^b

Enjoy life^b

Family^b

Enjoy Life^b

Good health^b

Enjoy life^b

Support^b

Normal life^b

Access to medicines^c

Normal life^b

Good care^c

Good care

Access to medicines^c

Fear^c

Pain free^b

Good doctors^c

Good health^c

Cure^c

Good doctors^c

Relapse^b

Not to worry^c

Good information^c

Finances^c

Capability^d

Worry^b

Pain free^c

Access to medicines^d

Good care^c

Friends^d

Friends^d

Good health^c

Good health^d

Pain free^d

Uncertainty^c