Satisfaction with information provision is associated with baseline but not with follow-up quality of life among lymphoma patients: Results from the PROFILES registry

Figures & data

Table I. Socio-demographic and clinical characteristics of respondents who completed both questionnaires.

	Total N = 355	Patients < 2 years since diagnosis N = 80	Patients ≥ 2 years since diagnosis N = 275	p-value
Tumor type				0.38
I-NHL	155 (44%)	33 (41%)	122 (44%)
A-NHL	138 (39%)	36 (45%)	102 (37%)
HL	62 (18%)	11 (14%)	51 (19%)
Age (at T1) (mean ± SD)	60.7 (13.2)	63.7 (11.4)	59.8 (13.6)	0.02
Years since diagnosis (mean ± SD)	4.5 (2.6)	1.2 (0.4)	5.4 (2.2)	< 0.01
Sex
Male	223 (63%)	55 (69%)	168 (61%)	0.24
Female	132 (37%)	25 (31%)	107 (39%)
Stage at diagnosis				0.88
I	80 (20%)	15 (15%)	65 (21%)
II	91 (22%)	23 (23%)	68 (22%)
III	67 (17%)	11 (11%)	56 (18%)
IV	82 (20%)	18 (18%)	64 (21%)
Unknown/other staging system^+	87 (21%)	35 (34%)	52 (17%)
Primary treatment
Radiotherapy	104 (30%)	19 (24%)	85 (31%)	0.26
Chemotherapy	248 (71%)	57 (73%)	191 (70%)	0.67
Active surveillance	69 (20%)	15 (19%)	54 (20%)	0.91
Stem cell transplantation	17 (5%)	1 (1%)	16 (6%)	0.14
Self-reported comorbidity				0.31
No comorbid condition	106 (32%)	20 (27%)	86 (33%)
1 comorbid condition	103 (31%)	23 (31%)	80 (31%)
2 comorbid conditions	70 (21%)	14 (19%)	56 (22%)
> 2 comorbid conditions	54 (16%)	17 (23%)	37 (14%)
Marital status				0.99
Partner	293 (84%)	66 (84%)	227 (84%)
No partner	58 (16%)	13 (16%)	45 (16%)
Educational level^$				0.17
Low	47 (13%)	12 (15%)	35 (13%)
Medium	213 (61%)	53 (67%)	160 (59%)
High	91 (26%)	14 (18%)	77 (28%)
Employment				–
Employed	335 (100%)	77 (100%)	258 (100%)
Not working/retired	–

A-NHL aggressive non-Hodgkin lymphoma; HL Hodgkin lymphoma; I-NHL indolent non-Hodgkin lymphoma.

^$Education levels included low = no/primary school; medium = lower general secondary education/vocational training; or high = pre-university education/ high vocational training/university; ⁺Chronic lymphocytic leukemia has a different staging (RAI) compared to the other tumors, which is incompletely registered by the Eindhoven Cancer registry.

Table II. Comparison of mean EORTC QLQ-INFO25, EORTC QLQ-C30 and HADS subscale scores between patients < 2 and ≥ 2 years since diagnosis and between T1 and T2 (N = 355).

	Baseline T1			Follow-up T2 (2 years later)
	Patients < 2 years since diagnosis Mean (SD)	Patients ≥ 2 years since diagnosis Mean (SD)	p-value	Patients < 2 years since diagnosis Mean (SD)	Patients ≥ 2 years since diagnosis Mean (SD)	p-value	p-value T1 vs. T2 Patients < 2 years since diagnosis^¥	p-value T1 vs. T2 Patients ≥ 2 years since diagnosis^¥
EORTC QLQ-INFO25+
Information about disease	55 (21)	52 (19)	0.31	51 (20)	52 (20)	0.73	0.15	0.89
Information about medical tests	66 (20)	65 (22)	0.64	60 (22)	61 (23)	0.86	0.01	0.01
Information about treatment	46 (23)	48 (23)	0.73	43 (24)	45 (22)	0.53	0.34	0.09
Information about other services	22 (24)	21 (23)	0.84	22 (23)	24 (23)	0.64	0.88	0.26
Satisfaction with information	65 (26)	60 (27)	0.15	58 (25)	61 (25)	0.33	0.02	0.49
Usefulness of information	68 (23)	64 (25)	0.16	62 (24)	62 (22)	0.92	0.02	0.17
EORTC QLQ-C30++
Physical functioning	79 (23)	83 (18)	0.05	77 (21)	80 (20)	0.20	0.37	< 0.01
Role functioning	74 (28)	81 (26)	0.04	76 (25)	78 (26)	0.50	0.40	0.08
Emotional functioning	83 (20)	86 (20)	0.28	83 (20)	85 (20)	0.42	0.99	0.61
Cognitive functioning	84 (23)	84 (21)	0.94	83 (19)	84 (20)	0.60	0.40	0.95
Social functioning	82 (26)	88 (21)	0.04	85 (21)	88 (20)	0.28	0.12	0.67
Quality of life	74 (18)	77 (19)	0.16	74 (17)	77 (19)	0.35	0.72	0.43
HADS+++
Anxiety	3.9 (3.6)	4.2 (3.7)	0.51	3.9 (3.4)	4.3 (4.0)	0.40	0.53	0.36
Depression	3.7 (3.3)	3.9 (3.6)	0.76	4.1 (3.6)	3.7 (3.6)	0.49	0.28	0.75

¥Based on paired t-test; + Higher score (0–100) indicates more perceived receipt of information; ++ Higher score (0–100) indicates better functioning; +++ Higher score (0–21) indicates higher levels of anxiety/depression.

Table III. Standardized betas of multivariate linear regression analyses evaluating the association of information provision with health-related quality of life, anxiety and depression all at baseline (T1).

	Physical functioning	Role functioning	Emotional functioning	Cognitive functioning	Social functioning	Quality of life	Anxiety	Depression
Patients < 2 years since diagnosis (N = 61)
Disease information	−0.31	−0.19	−0.01	−0.32	−0.30	0.07	0.13	0.11
Medical test information	0.27	0.11	0.03	0.46*	0.39	−0.01	−0.41*	−0.34
Treatment information	0.19	−0.03	0.11	0.04	0.04	−0.13	0.07	−0.04
Other services information	−0.14	0.07	−0.27	−0.16	−0.06	0.01	−0.02	0.17
Satisfaction with information Yes No	Reference −0.15	Reference −0.11	Reference −0.04	Reference −0.15	Reference −0.11	Reference −0.04	Reference 0.10	Reference 0.27
R^2	0.29	0.19	0.41*	0.41*	0.29	0.16	0.35	0.37
Patients ≥ 2 years since diagnosis (N = 230)
Disease information	0.06	0.03	−0.04	0.12	0.05	−0.06	−0.06	−0.06
Medical test information	0.01	0.09	0.20*	0.08	0.05	0.08	−0.03	−0.14
Treatment information	0.02	0.03	−0.21*	−0.20	−0.07	0.08	0.12	0.05
Other services information	−0.10	−0.08	0.01	−0.12	−0.10	−0.07	0.04	0.12
Satisfaction with information Yes No	Reference −0.22**	Reference −0.21**	Reference −0.15*	Reference −0.18*	Reference −0.33**	Reference −0.17*	Reference 0.09	Reference 0.12
R^2	0.28**	0.21**	0.26**	0.19**	0.24**	0.19**	0.18**	0.28**

Corrected for age, time since diagnosis, sex, number of comorbid conditions, educational level and marital status. *p < 0.05; **p < 0.01.

Table IV. Standardized betas of multivariate linear regression analyses evaluating the association of information provision at baseline with health-related quality of life, anxiety and depression at T2.

	Physical functioning	Role functioning	Emotional functioning	Cognitive functioning	Social functioning	Quality of life	Anxiety	Depression
Patients < 2 years since diagnosis (N = 61)
Disease information	0.01	−0.19	0.29	−0.14	0.05	−0.16	−0.31	−0.26
Medical test information	0.04	0.16	−0.13	0.01	−0.04	0.14	0.18	0.01
Treatment information	−0.14	0.02	−0.22	0.03	0.13	−0.21	0.29	0.34
Other services information	0.01	−0.12	−0.05	−0.09	−0.02	−0.03	0.09	−0.06
Satisfaction with information Yes No	Reference −0.08	Reference −0.16	Reference −0.06	Reference −0.06	Reference −0.13	Reference −0.04	Reference −0.01	Reference 0.06
R^2	0.60**	0.40*	0.39	0.67**	0.57**	0.47**	0.55**	0.58**
Patients ≥ 2 years since diagnosis (N = 230)
Disease information	0.06	0.06	−0.05	0.04	0.03	0.12	0.04	−0.08
Medical test information	−0.05	−0.09	−0.03	0.03	0.12	−0.05	−0.07	−0.09
Treatment information	−0.07	−0.04	−0.06	−0.06	−0.06	−0.04	−0.05	0.06
Other services information	−0.04	−0.04	0.01	−0.02	−0.10	−0.03	0.01	0.06
Satisfaction with information Yes No	Reference −0.13*	Reference −0.12	Reference −0.13*	Reference −0.01	Reference −0.04	Reference −0.09	Reference 0.01	Reference −0.03
R^2	0.62**	0.33**	0.48**	0.69**	0.39**	0.56**	0.56**	0.77**

Corrected for baseline functioning level, age, time since diagnosis, sex, number of comorbid conditions, educational level and marital status. *p < 0.05; **p < 0.01.

Figure 1. HRQoL at T2 according to the stability of satisfaction with the received information over time based on ANOVA (N = 291). *p < 0.05; **p < 0.01.

Table V. Standardized betas of multivariate linear regression analyses evaluating the association of stability of information satisfaction with health-related quality of life, anxiety and depression at T2 (N = 291).

	Physical functioning	Role functioning	Emotional functioning	Cognitive functioning	Social functioning	Quality of life	Anxiety	Depression
Stability of satisfaction with received information Stable satisfied Became satisfied Became dissatisfied Stable dissatisfied	Reference −0.04 −0.01 −0.03	Reference −0.03 0.04 −0.04	Reference −0.06 −0.08 −0.13*	Reference 0.01 −0.03 −0.09*	Reference −0.05 −0.06 −0.05	Reference −0.04 −0.01 −0.06	Reference −0.01 0.06 0.05	Reference 0.01 0.06 0.02
R^2	0.63**	0.35**	0.42**	0.46**	0.39**	0.49**	0.52**	0.57**

Corrected for baseline functioning level, age, time since diagnosis, sex, number of comorbid conditions, educational level and marital status. *p < 0.05; **p < 0.01.