Table 4.

Overview of the domains that patients indicated as determinants of their QoL at time point 1 (T1) and time point 2 (T2). It can be seen that some domains listed at T1 were no longer important at T2, and new domains were added at T2. Additionally, the weights of domains, which indicate how important these domains were for the overall QoL of the participants, changed from T1 to T2. Both, the exchange of domains and the change in weight indicate response shifts (Sprangers and Schwartz, 1999) as disease progressed. The QoL of participant H was only assessed once.

Participant	Time point 1		Time point 2
	Domains	Weight (%)	Domains	Weight (%)
A	Family	30	Family	40
	Independence	30	Independence	10
	Social life	10	Social life	10
	Mobility	20	Communication	10
	Hope	10	Health	30
B	Social life	38	Love	25
	Self-determined living	9	Health	25
	Being useful	9	Being challenged	15
	Financial security	9	Mobility	15
	Health	35	Quality of care	20
D	Family	32	Family	50
	Mobility	12	Mobility	10
	Mental health	18	Eating/drinking	10
	Marriage	24	Sex	15
	Recognition	13	Quality of care	15
C	Family	40	Family	40
	Social life	30	Social life	22
	Eating/drinking	10	Eating/drinking	20
	Mobility	10	Mobility	13
	Communication	10	Computer	5
E	Family	50	Family	35
	Social life	35	Social life	30
	Communication	10	Communication	20
	Sex	2.5	Sex	5
	Music	2.5	Music	10
F	Financial security	10	Financial security	10
	Emotional well-being	20	Independence	20
	Social life	20	Social life	25
	Recognition	10	Love	20
	Intellectual stimulation	40	Intellectual stimulation	25
G	Communication	70	Communication	60
	Financial security	5	Social life	10
	Social life	10	Health	10
	Health	5	Family	10
	Recognition	10	Financial security	10
H	Music	10
	Television	20
	Family	40
	Social life	10
	Visitors	20