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

Abstract

Background. Appropriate information provision is an important determinant of patient satisfaction and might also affect health-related quality of life (HRQoL) of cancer patients. The aim of this study was to examine the relationship between perceived information provision at baseline and HRQoL, anxiety and depression among lymphoma patients two years later.

Material and methods. This study is part of a longitudinal, population-based survey among all lymphoma patients diagnosed between 1999 and 2009 as registered in the Eindhoven Cancer Registry (southern part of The Netherlands). Patients between six months and 10 years after diagnoses received the first questionnaire including the EORTC QLQ-INFO25, EORTC QLQ-C30 and HADS at baseline (T1) and the second two years later (T2). All analyses are stratified for time since diagnosis (< 2 and ≥ 2 years since diagnosis).

Results. At baseline 69% of the patients (n = 1186) responded, at T2 355 (30%) patients responded. For patients < 2 years since diagnosis, receiving more medical test information was associated with higher levels of cognitive functioning (ß = 0.46; p = 0.04) and lower levels of anxiety (ß = −0.41; p = 0.04) at baseline, no prospective relationships were found. For patients ≥ 2 years since diagnosis, receiving more medical test information (ß = 0.20; p = 0.03) was associated with better emotional functioning, while receiving more treatment information was associated with worse emotional functioning (ß = −0.21; p = 0.04). Among this group, satisfaction with the received information was associated with better functioning (ß ranging from −0.15 to −0.33; all p < 0.05) at baseline, and these relationships remained significant prospectively for physical (ß = −0.13; p = 0.02) and emotional functioning (ß = −0.13; p = 0.04) only. Stability of satisfaction with received information over time was associated with better emotional (ß = −0.13) and better cognitive functioning (ß = −0.09; p < 0.05) at T2.

Conclusion. The present study showed that satisfaction with received information among lymphoma patients was associated with better HRQoL at baseline (only for patients ≥ 2 years since diagnosis), but not at follow−up when corrected for baseline HRQoL.

The provision of information to patients is one of the most important factors of cancer care across the cancer continuum. The goal of providing information is to prepare patients for their treatment, to increase treatment adherence and abilities to cope with the illness as well as to promote recovery [1]. Adequate information provision is a difficult task since information is often complex, meant to make serious decisions, and potentially upsetting [2]. The majority of cancer patients (> 80%) want as much information as possible about their disease, treatment and rehabilitation [3]. Information needs vary by sex, age, cultural background, time since diagnosis, educational level, stage of the disease and adjustment style. Results of studies on needs among cancer patients show that needs for information remain unmet for a major part of the patients [4], indicating the existence of misconceptions among healthcare providers (HCP) regarding patients’ information needs [5]. Providing information that is congruent with patients’ needs is an important determinant for patient satisfaction [6]. Patient satisfaction levels concerning information provision are based on the quantity of information received (defined as satisfaction with the amount of received information in this study) and on the quality of the information received (defined as the usefulness of the received information).

A study among lymphoma patients showed that satisfaction with the amount and usefulness of the received information were relatively good, however one third of patients still needed more information about specific topics [7]. A recent review from our group showed that satisfied patients and patients with fulfilled information needs in general have a better health-related quality of life (HRQoL) and lower levels of anxiety and depression [6]. However, most studies included in this review were inconclusive because of methodological flaws. Almost all included studies used non-validated questionnaires to measure information provision, sample sizes were small, and most studies had a cross-sectional design which limits the determination of causal associations. Therefore, the aim of the current study was to examine the relationship between information provision at baseline and HRQoL, anxiety and depression among lymphoma patients two years later. Since studies show that information needs are different for short-term (most prominent information needs are information about disease stage, treatment options and side-effects of treatment) and long-term cancer survivors (continued need for treatment-related information and also information about rehabilitation is important) [8], all analyses will be stratified for time since diagnosis (< 2 and ≥ 2 years since diagnosis).

Methods

Setting and population

This study is part of a longitudinal, population-based survey among lymphoma patients registered within the Eindhoven Cancer Registry (ECR) of the Comprehensive Cancer Centre South. The ECR records data on all patients who are newly diagnosed with cancer in the southern part of the Netherlands, an area with 2.3 million inhabitants, 18 hospital locations and two large radiotherapy institutes. The ECR was used to select all patients who were diagnosed with non-Hodgkin lymphoma (NHL) and Hodgkin lymphoma (HL) between 1 January 1999 and 1 January 2009. We included indolent (including Chronic Lymphocytic Leukemia) and aggressive B-cell NHL and HL as defined by the International Classification of Diseases for Oncology-3 codes (ICD-O-3). Ethical approval for the study was obtained from a local certified Medical Ethics Committee.

Data collection

Data collection was done within Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES). PROFILES is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short- and long-term cancer patients. PROFILES contains a large web-based component and is linked directly to clinical data from the ECR. Details of the data collection method were previously described [9]. From May until November 2009, patients between six months and 10 years after diagnoses were included in the study and received the first questionnaire at baseline (T1). From May until November 2011, the patients who agreed to participate in the follow-up received the second questionnaire containing the same study measures (T2). The time span between the two questionnaires was approximately two years.

Study measures

Socio-demographic and clinical characteristics

Clinical information was available from the ECR that routinely collects data on tumor characteristics, including date of diagnosis, tumor grade, histology, stage, primary treatment, and patients’ background characteristics. Comorbidity at the time of survey was categorized according to the adapted Self- administered Comorbidity Questionnaire (SCQ) [10]. Questions on marital status, educational level, and current occupation were added to the questionnaire.

EORTC QLQ-INFO25

The Dutch version of the internationally validated European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information (EORTC QLQ-INFO25) was used to evaluate the information received by lymphoma patients [11]. This 25-item questionnaire incorporates four information provision subscales: perceived receipt of information about the disease (four items regarding diagnosis, spread of disease, cause(s) of disease and whether the disease is under control), medical tests (three items regarding purpose, procedures and results of tests), treatment (six items regarding medical treatment, benefits, side effects, effects on disease symptoms, social life and sexual activity) and other care services (four items regarding additional help, rehabilitation options, managing illness at home, psychological support). The answer categories for these questions were “not at all”, “a little”, “quite a bit”, and “very much”. Additionally, the questionnaire contains eight single items, two items on perceived receipt of information about other areas (different places of care, things you can do to help yourself to get well); two items on the perceived receipt of written information and information on CD, tape, or video (yes/no answer categories); two items on the wish to receive more or less information (yes/no answer categories); and two items on the qualitative aspects on the satisfaction with the amount of received information and the usefulness of the information disclosed (answer categories: not at all; a little; quite a bit; very much). All scores of the four subscales and the single items satisfaction and usefulness of the received information are linearly transformed to a scale of 0 to 100 according to the guidelines of the EORTC [11]. The questionnaire has been internationally validated, and internal consistency for all scales is good (α> 0.70), as is test–retest reliability (intraclass correlations > 0.70) [11]. A recent study also showed that the scale structure of the EORTC QLQ-INFO25 is valid [12].

EORTC QLQ-C30

HRQoL was measured by the Dutch version of the validated EORTC QLQ-C30 [13]. This 30-item HRQoL questionnaire consists of five functional scales, a global health status scale, three symptom scales and single symptom items. Answer categories range from one (not at all) to four (very much). All scales are linearly transformed according to the guidelines of the EORTC [13], to reach a scale range of 0 to 100. A higher score on functional scales and global quality of life implies better HRQoL.

Anxiety and depression

Anxiety and depressive symptoms were assessed using the Hospital Anxiety and Depression Scale (HADS). The HADS is a self-report questionnaire comprising 14 items on a four-point Likert-scale; seven for depression and seven for anxiety [14]. The scores range from 0 to 21, with higher scores indicating higher levels of anxiety or depression. A cut-off score of 8 was used to determine symptoms of depression or anxiety [14].

Statistical analyses

Differences in socio-demographic and clinical characteristics between respondents, non-respondents and patients with unverifiable addresses at T1; patients who completed one or two questionnaires; patients < 2 years and ≥ 2 years since diagnosis were compared with a χ², ANOVA or independent t-tests, where appropriate.

Difference in mean EORTC QLQ-INFO25, EORTC QLQ-C30 and HADS scores between patients < 2 years and ≥ 2 years since diagnosis were compared by independent t-tests. Paired sample t-tests were performed to compare the mean EORTC QLQ-INFO25, EORTC QLQ-C30 and HADS scores on T1 and T2 for patients < 2 years and ≥ 2 years since diagnosis separately. Clinical relevance was determined following evidence-based guidelines for EORTC QLQ-C30 scores [15] and Norman's ‘rule of thumb’ for HADS scores, whereby a difference of ≈0.5 standard deviation indicates a threshold of discriminant change in scores of a chronic illness [16].

Multivariate linear regression analyses were carried out in order to investigate the association on T1 between HRQoL, anxiety and depression (dependent variables) with the four information provision subscales and satisfaction with received information (independent variables), controlled for covariates age, sex educational level, marital status, time since diagnosis, treatment and number of comorbidities, that were determined a priori [17]. Furthermore, the predictive value of the four information provision subscales and satisfaction with received information (T1) on HRQoL, anxiety and depression (T2) was investigated by multivariate linear regression analyses corrected for baseline HRQoL, anxiety and depression (T1) and the same covariates as described above. These analyses were performed stratified by time since diagnosis (< 2 years; ≥ 2 years).

Additionally, mean EORTC QLQ-C30 subscale scores, stratified by patients who were 1) satisfied at T1 and T2 (stable satisfied), 2) unsatisfied at T1 and satisfied at T2 (became satisfied), 3) satisfied at T1 and unsatisfied at T2 (became unsatisfied), 4) unsatisfied at T1 and T2 (stable unsatisfied), were compared by ANOVA. Multivariate linear regression analyses were carried out, to investigate the association between the stability of satisfaction with received information (independent) with HRQoL, anxiety and depression (dependent), corrected for baseline HRQoL, anxiety and depression and the same covariates as described above.

All statistical tests were two-sided and considered significant if p < 0.05. All analyses were conducted using SPSS version 19.0 (Statistical Package for Social Sciences, Chicago, IL, USA).

Results

Patient characteristics

Of the 1730 lymphoma patients who were sent a questionnaire, 1186 (69%) completed this at T1, 286 patients did not respond and 258 patients had an unverifiable address. Subsequently, 355 (30%) of the 1186 patients completed this questionnaire at T2. Patients with unverifiable addresses at T1 were younger (56 vs. 61 and 60 years; p < 0.01) and diagnosed longer time ago (4.4 vs. 3.9 and 3.8 years; p = 0.03) compared to respondents and non-respondents. Non-respondents at T1 were more often diagnosed with indolent NHL (55% vs. 46% and 47%; p = 0.02) compared to respondents and patients with unverifiable addresses. In addition, non-respondents at T1 less often received chemotherapy (57% vs. 67%; p < 0.01) but active surveillance more often (31% vs. 23%; p < 0.01) compared to respondents. No significant differences between the three groups were seen with respect to disease stage and radiotherapy.

A baseline comparison between patients who completed one or two questionnaires indicated that the latter had a significant longer mean time since diagnosis, more often received stem cell transplantation, were employed and had a partner more often. Furthermore, patients who completed both questionnaires scored somewhat better on physical and emotional functioning, global quality of life and had lower levels of anxiety and depression compared to patients who only completed the baseline questionnaire, although differences were not clinically relevant.

The mean age at baseline survey completion of the respondents who completed both questionnaires was 60.7 years with a mean time since diagnosis of 4.5 years (Table I). Chemotherapy was the most common primary treatment (71%). Patients < 2 years since diagnosis were on average four years older compared to patients ≥ 2 years since diagnosis (p = 0.02; Table I).

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.

Perceived information provision

No differences in the perceived receipt of information were found between patients < 2 years and ≥ 2 years since diagnosis at T1 and T2 (Table II).

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.

Patients < 2 years since diagnosis showed a significant decrease over time in receipt of medical test information (66 vs. 60, p = 0.01) and satisfaction with (65 vs. 58, p = 0.02) and usefulness of (68 vs. 62, p = 0.02) the received information (Table II). Patients ≥ 2 years since diagnosis showed a significant decrease in receipt of medical test information (65 vs. 61, p = 0.01). All differences were not clinically relevant [16].

In total, 29% of the patients would have liked to receive more information at T1 and 23% at T2. Most frequently mentioned topics to receive more information about were the possible causes of cancer, possible side effects of their treatment, long-term effects of cancer on different aspects of life, aftercare, and overall information on cancer. Overall, 22% of the patients wanted to receive more information at one of the assessment periods, 63% wanted no additional information and 15% did want to receive more information at both assessment periods. Of the first group, 47% wanted to receive information about the same topics and 53% wanted to receive different information at T2 compared to T1 (from more general disease specific information to information about the course of the disease and aftercare).

HRQoL, anxiety and depression

At T1 patients < 2 years since diagnosis reported worse physical (79 vs. 83, p = 0.05), role (74 vs. 81, p = 0.04) and social functioning (82 vs. 88, p = 0.04) compared to patients ≥ 2 years since diagnosis (Table II). These differences were of small clinical importance. Patients < 2 years since diagnosis showed no significant changes in functioning, anxiety and depression levels over time, while patients ≥ 2 years since diagnosis showed a slightly decreased level of physical functioning over time (83 vs. 80, p < 0.01; Table II). This decrease was not clinically meaningful [15].

Associations of information provision with HRQoL, anxiety and depression at baseline

At baseline, multivariate linear regression analyses showed that among patients < 2 years since diagnosis, receiving more medical test information was associated with higher levels of cognitive functioning (ß = 0.46; p = 0.04) and lower levels of anxiety (ß = −0.41; p = 0.04; Table III). No other significant relationships were found.

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.

Among patients ≥ 2 years since diagnosis, receiving more medical test information (ß = 0.20; p = 0.03) was associated with better emotional functioning, while receiving more treatment information was associated with worse emotional functioning (ß = −0.21; p = 0.04). Satisfaction with the received information was associated with better functioning (ß ranging from −0.15 to −0.33; Table III), but not with anxiety and levels of depression.

Associations of information provision at baseline with HRQoL, anxiety and depression at follow-up

When performing linear regression analyses evaluating the association of baseline information provision with HRQoL, anxiety and depression at T2, with correction for baseline levels and other covariates, only two relationships remained significant. For patients ≥ 2 years since diagnosis satisfaction with the received information was related to better physical (ß = −0.13, p = 0.02) and emotional functioning (ß = −0.13, p = 0.04; Table IV).

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.

ANOVA showed that stable satisfied patients (56%) reported better HRQoL and lower levels of anxiety and depression at T2 compared to patients who were unsatisfied (20%) or with changing satisfaction levels over time (24%; Figure 1). Multivariate linear regression analyses corrected for baseline HRQoL and covariates showed that the stability of satisfaction with received information predicted higher scores on emotional and cognitive functioning (ß = −0.13 and ß = −0.09 respectively, both p < 0.05; Table V).

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.

Discussion

This population-based study among lymphoma patients showed that the perceived receipt of information and satisfaction with the amount and usefulness of the received information did not differ between patients < 2 and ≥ 2 years since diagnosis. For patients < 2 years since diagnosis a significant negative relationship was found between receipt of medical test information and levels of anxiety at baseline, no prospective relationships were found. For patients ≥ 2 years since diagnosis, emotional functioning was positively related to receipt of medical test information and negatively with receipt of treatment information at baseline. Among this group, satisfaction with the amount of received information was positively related to all functioning scales at baseline, and these remained significant prospectively for physical and emotional functioning only. Stability of satisfaction with received information over time was associated with emotional and cognitive functioning at T2.

Relationship between information provision, HRQoL and time since diagnosis at baseline

The receipt of medical test information was negatively associated with levels of anxiety for patients < 2 years since diagnosis and positively with emotional functioning for patients ≥ 2 years since diagnosis. The amount of received medical test information was high for most patients and was not mentioned as topic where patients wanted to receive more information about, indicating that the information provision with respect to this topic meets the information needs. Furthermore, medical test information is always personalized and mostly has a clear message. Clear information provision leads to a coherent understanding and better adjustment to cancer [18]. Besides this, the content of the information, e.g. a negative test, could also decrease levels of anxiety and increase emotional functioning on itself.

For patients ≥ 2 years since diagnosis receipt of treatment information was negatively associated with emotional functioning. Treatment-related information, especially information concerning side effects and long-term effects of treatment, is a frequently mentioned topic among patients ≥ 2 years since diagnosis where they want to receive more information about. It could be that (part of) the information received was unclear or incomplete, leading to uncertainty and worse emotional functioning.

The association between satisfaction with the received information and HRQoL at baseline was only found for patients ≥ 2 years since diagnosis. In the first years after diagnosis clinical factors like the severity of the disease and treatment(s) received may be more important determinants of HRQoL compared to the perceived information provision. In addition, the content of the information given, like for example the chance of survival, might be more important than the amount and usefulness of the information given. After these first years information provision will become more important for patients’ well-being. Satisfaction levels will be determined by the levels of information received (quantity), but also the quality of information is important (the degree to which information needs are met). In our study the information needs of patients changed from disease and medical test related to more aftercare-related topics. Exactly this information about other services was one of the most frequently reported unmet information needs among patient ≥ 2 years since diagnosis.

Prospective relationship between information provision and HRQoL

The relationship between satisfaction with received information and HRQoL largely disappeared after correction for baseline levels. This indicates that other factors are more important in predicting long-term HRQoL. However, it could also be possible that the time span between the two measurement periods was too large to detect differences in HRQoL related to satisfaction with information provision. In addition, correction for baseline levels can lead to overcorrection of the models. Another limitation of these analyses is that they focus on mean differences and not on individual changes. Given the large standard deviations of the information provision scales, there is a high degree of variation between individuals. Therefore we decided to make a distinction between patients who remained stable satisfied or dissatisfied or patients who had fluctuating satisfaction levels. Our results show that stable satisfied patients had the highest levels of mental HRQoL also after adjusting for baseline levels. This result is in agreement with the results of the five prospective studies included in our systematic review which found a strong positive relationship between adequate information provision and mental health but not physical health [6]. In addition, a recent US study found the number of information needs of cancer patients to be inversely related to mental well-being, particularly for those with low confidence for obtaining information [19].

Mechanisms behind relationship between satisfaction and mental HRQoL

These positive mental health outcomes associated with the high satisfaction levels can be the direct result of conversations between HCP and patient from which patients feel recognized, validated, trusted, worthy, reassured and comforted [20,21] and indirectly through diagnosis and treatment of mental problems (anxiety and depression) and strengthened social support. Furthermore, it is also possible that patients with higher HRQOL are better able to understand, comprehend and remember the received information because they are healthier and less distressed. Alternatively, it is possible that patients with higher levels of HRQoL and lower levels of distress naturally report higher levels of satisfaction with the received information, or in other words have stable satisfaction levels, independent of the information they actually received. Moreover, HRQoL might also influence information needs by itself, since patients with higher levels of HRQoL probably have fewer health problems and do not need information about these problems.

Implications

Although our results concerning prospective relationships between information provision and HRQoL are limited, we found significant cross-sectional relationships between satisfaction with the amount of received information and HRQoL for patients ≥ 2 years since diagnosis. This latter result indicates that it is important to satisfy the patient and to keep the patient satisfied with respect to information provision. The best way to satisfy the patient is to tailor the information provision to the specific needs of the patients [22]. Besides socio-demographic and clinical factors, the information needs of cancer patients also depend on the patients’ coping style. Some patients have a monitoring style, the tendency seek out stressful health information, and have a need to receive all possible information, while others have a blunting style, the tendency to avoid threatening information, and do not want all information [23]. The information needs of a patient can be unraveled by consulting the patient him or herself and check the understanding of the patient. Recently, some strategies were devised to address the information needs of cancer patients. First, survivorship care plans provide cancer patients with a summary of their treatment as a formal document that also includes recommendations for subsequent cancer surveillance, management of late effects, and strategies for health promotion [24]. Second, feedback of patient reported outcomes to the HCP has the potential to help detect unmet needs and symptoms, leading to better control and monitoring of such issues, serve as a guide for HCP to discuss HRQoL issues, act as patients’ voice, and facilitate individualized information provision and care [25].

Strengths and limitations

The present study has limitations that should be mentioned. First, although the response rate at baseline was high and information was present concerning socio-demographic and clinical characteristics of the non-respondents, whether non-respondents declined to participate in the study because of poor health remains unknown. Second, a large part of the patients did not respond to the second questionnaire (5% died, 25% indicated at T1 not wanting to participate at T2 and 40% because of unknown reasons), these non-responders had worse HRQoL scores at T1, which possibly caused some selection bias at T2. Third, the mean time since diagnosis was almost four years, which could influence the recall effect of information received. However, we did not found differences in the perceived receipt of information among short- and long-term patients and the majority (98%) of patients was still under active follow-up. Fourth, although the majority of the patients undergo regular follow-up visits, it might be possible that indolent NHL and HL patients still undergo medical treatments and more follow-up visits compared to aggressive NHL patients and therefore have the opportunity to receive more information. Unfortunately, it was not possible to correct our analyses for tumor type since the groups were too small. Future studies should make use of a more homogeneous study population and sample patients all at a similar point in their disease trajectory (e.g. diagnosis, start of active treatment) and then follow through to draw definitive conclusions. Furthermore, over time, information strategies have changed in the healthcare system and a lot of new information sources became available. This might have resulted in an increasing expectation in the information requirements for which we were not able to correct in our analyses. Last, the EORTC QLQ-INFO25 only measures the information patients indicated to have received, it is not clear how much information was actually provided. It would therefore be interesting to compare data on actual information provision with data from questionnaires.

Conclusion

Despite the limitations noted, the present study showed that satisfaction with received information among lymphoma patients was associated with better HRQoL at baseline (only for patients ≥ 2 years since diagnosis), but not at follow-up when corrected for baseline levels. Patients who were satisfied with the received information on both time points report better mental HRQoL.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

The data collection of this study was funded by the Comprehensive Cancer Centre South, Eindhoven, The Netherlands, and a Medium Investment Grant from the Netherlands Organisation for Scientific Research (NWO#480-08-009). Dr Floortje Mols is supported by a VENI grant (#451-10-041) from the Netherlands Organization for Scientific Research (The Hague, The Netherlands), Dr Lonneke van de Poll-Franse is supported by a Cancer Research Award from the Dutch Cancer Society (#UVT-2009–4349). These funding agencies had no further role in study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the paper for publication.