
==== Front
Dig Surg
Dig Surg
DSU
DSU
Digestive Surgery
0253-4886
1421-9883
S. Karger AG Basel, Switzerland

39074469
540439
10.1159/000540439
00000
Research Article
Information Needs in Patients with Potentially Curable Gastroesophageal Cancer
Information Need of Patients with Gastroesophageal Cancer
2749096
Keywani Kammy a b
2749097
Jezerskyte Egle a b
2749098
Sprangers Mirjam A.G. c
2749099
Eshuis Wietse J. a b
2749100
van Berge Henegouwen Mark I. a b
2749101
Gisbertz Suzanne S. a b
a Department of Surgery, Amsterdam UMC Location University of Amsterdam, Amsterdam, The Netherlands
b Cancer Center Amsterdam, Cancer Treatment and Quality of Life, Amsterdam, The Netherlands
c Department of Medical Psychology, Amsterdam UMC Location University of Amsterdam, Amsterdam, The Netherlands
Correspondence to: Suzanne S. Gisbertz, s.s.gisbertz@amsterdamumc.nl
29 7 2024
9 2024
41 3 122132
23 8 2023
15 7 2024
2024
© 2024 The Author(s). Published by S. Karger AG, Basel
2024
https://creativecommons.org/licenses/by-nc/4.0/ This article is licensed under the Creative Commons Attribution 4.0 International License (CC BY) (http://www.karger.com/Services/OpenAccessLicense). Usage, derivative works and distribution are permitted provided that proper credit is given to the author and the original publisher.
Abstract

Introduction

Gastroesophageal cancer patients’ information needs remain understudied, despite their complex treatment trajectories.

Methods

This study examined the (i) information needs of patients with or without postoperative complications, (ii) information needs of male and female patients, and (iii) the association between information needs and health-related quality of life (HR-QoL) following gastroesophageal cancer surgery. Patients completed the EORTC-QLQ-INFO25, QLQ-C30, and QLQ-OG25 questionnaires before and after curative surgery. Five information needs domains were investigated: information about the disease, about treatments, about medical tests, about things patients can do to help themselves, and overall helpfulness. Additionally, HR-QoL domains global health status, eating restrictions, and anxiety were explored.

Results

A total of 132 patients completed the questionnaires at baseline, 216 patients at 6–12 months, 184 patients at 18–24 months, and 163 patients at 3–5 years post-operation. There were no significant differences in information needs between patients with or without complications or between male and female patients. Patients with a higher global health status found the information more helpful at 6–12 months (p < 0.001), 18–24 months (p < 0.001), and 3–5 years (p < 0.001) postoperatively, as did patients who experienced more anxiety at 18–24 months (p = 0.009) and 3–5 years (p < 0.001).

Conclusion

Gastroesophageal cancer patients, regardless of sex or postoperative complications, have consistent information needs, yet those with higher global health status and elevated anxiety levels find the information particularly helpful, emphasizing the importance of tailored communication strategies.

Keywords

Information needs
Upper gastrointestinal tract
Esophagectomy
Gastrectomy
No funding was received for this research.
==== Body
pmcIntroduction

A fluent information exchange is the basis of a good relationship between a doctor and a patient. Receiving adequate information can help patients to feel more in control, to better understand the course of their treatment, and to support the decision-making process [1]. Patients require information over a long period of time, starting at the time of the first doctor’s visit. Cancer patients report a need for information about their treatment and recovery during diagnosis, treatment, and post-treatment period [2]. Overall, patients with cancer report to be well informed before surgery. Nevertheless, as many as 51.6% of these patients express a desire to have been provided with more comprehensive information [3]. Several factors have been identified to correlate with a heightened need for information among cancer patients, such as the occurrence of postoperative complications, female gender, impaired health-related quality of life (HR-QoL) after surgery, younger age, having a partner, and a lower education level [2, 4–7]. However, knowledge regarding information needs of patients with gastroesophageal cancer is scarce. These patients may have different information needs as these patients often undergo major, complex surgical procedures that are frequently accompanied by postoperative complications and decreased quality of life (42–65%) [8–10]. In addition, the majority of gastroesophageal cancer patients is male [11]. Four studies investigated information needs of esophageal cancer patients. Two studies promoted information provision to patients with esophageal cancer by developing a Web‐based question prompt sheet and by establishing a minimum set of information items [12, 13]. In addition to these studies that assist in information provision, only two studies investigated the difference in information needs between different groups of patients with esophageal cancer. A small cohort study identified cultural differences in information needs between Italian (N = 72) and Dutch (N = 72) esophageal cancer patients [14]. Overall, Dutch patients were found to be more satisfied with the information received at diagnosis, and Italian patients reported more satisfaction with the information about the disease during neoadjuvant therapy. Lastly, in a recent study, the information needs of patients treated with curative (N = 90) or palliative (N = 22) intent were compared [15], and the relation with HR-QoL was investigated. Patients who received palliative treatment reported to be less informed and less satisfied with the provided information. Some information items were associated with global health status and anxiety. The difference in information needs between gastroesophageal cancer patients with or without postoperative complications and between male and female patients has not yet been investigated.

This study aimed to explore the information requirements of gastroesophageal cancer patients who have undergone curative treatment. In addition to identifying potential disparities between males and females or patients with or without postoperative complications, the study also sought to investigate the correlation between information needs and health-related quality of life (HR-QoL). It was hypothesized that information needs would be higher among patients experiencing postoperative complications, female patients, and those with compromised HR-QoL.

Methods

Study Design and Patient Population

This prospective comparative cohort study was performed in a tertiary referral center from October 2014 until October 2018. All consecutive patients who underwent an esophagectomy or a (sub)total gastrectomy for esophageal, gastroesophageal junction (GEJ) or gastric cancer between January 2013 and October 2018 were included. Patients following resection for a gastrointestinal stromal tumor, salvage procedures, and patients with a colonic interposition or no reconstruction were excluded from this study. Patients were asked to complete the questionnaires during the outpatient clinic visits at baseline (before surgery), at 6–12 months, at 18–24 months, and at 3–5 years follow-up after surgery. Each patient completed the questionnaires at one or multiple time points; therefore, the cohorts at baseline, at 6–12 months, at 18–24 months, and at 3–5 years follow-up were not independent of each other. The STROBE guidelines were followed for the structure of this article [16].

Treatment

Patients with esophageal or GEJ cancer were usually treated with neoadjuvant chemoradiotherapy [17]. Patients with gastric cancer usually received perioperative chemotherapy (epirubicin, oxaliplatin, and capecitabine) [18] or, if included in the CRITICS trial, randomized to perioperative chemotherapy or preoperative chemotherapy and adjuvant chemoradiotherapy [19]. The type of esophageal or gastric cancer surgery depended on patient and tumor characteristics and included a transthoracic esophagectomy with gastric tube reconstruction with a cervical or intrathoracic anastomosis, a transhiatal esophagectomy with gastric tube reconstruction, a total gastrectomy with or without distal esophagectomy with a Roux-Y reconstruction, or a subtotal gastrectomy with a Roux-Y reconstruction. Operations were either performed minimally invasively, open, or hybrid.

Patient, Tumor, and Treatment Characteristics and Postoperative Complications

The prospectively maintained database of Amsterdam UMC was used to obtain clinical data of patient, tumor, and treatment characteristics. Recorded postoperative complications, defined according to the Esophagectomy Complications Consensus Group (ECCG) criteria [20], included anastomotic leakage, supraventricular fibrillation, pneumonia, intra-abdominal abscess, wound infection, recurrent nerve palsy, reoperation, pulmonary embolism, chyle leakage, admission to the intensive care unit, and sepsis. The severity of complications was scored according to the Clavien-Dindo classification [21, 22].

Information Needs

The validated European Organization for Research and Treatment of Cancer (EORTC) information needs of cancer patients questionnaire (EORTC QLQ-INFO25) contains 25 items from which scores for 13 domains can be calculated [23, 24]. We selected 5 of these domains (15 items) that are most applicable to daily clinical practice: information about the disease, information about treatments, information about medical tests, information about things patients can do to help themselves, and whether the information was helpful.

We further selected topics from the EORTC QLQ-INFO25 questionnaire that patients need to be informed about at minimum. These concerned the following seven items with the question: how much information did you receive during your current disease or treatment about the following:The diagnosis of your disease?

Whether the disease is under control?

The results of the medical tests you have already received?

The medical treatment (chemotherapy, radiotherapy, surgery, or othertreatment modality)?

The expected benefit of the treatment?

Things that you can do to help yourself get well (e.g., rest, contact with others)?

Has overall the information you received been helpful?

For these items, we examined the percentages of patients who indicated not to have received information at all. The objective was to identify the areas in which patients felt a lack of provided information, enabling us to highlight specific subjects that physicians and other healthcare professionals need to emphasize during their daily patient interactions, particularly in the context of outpatient clinical practice. The 15 questions of the 5 selected information needs domains employ 4 response options: (1) not at all, (2) a little, (3) quite a bit, and (4) very much. The responses of the five selected information needs domains were linearly transformed into 0–100 scores. A higher score was indicative of more information received. The responses of the seven selected items were dichotomized into not at all versus a little to very much.

Health-Related Quality of Life

The cancer-specific EORTC-QLQ-C30 and GEJ cancer-specific EORTC-QLQ-OG25 questionnaires were used [25, 26]. EORTC-QLQ-C30 and EORTC-QLQ-OG25 contain 15 and 16 domains, respectively. This study focused on three distinct domains of health-related quality of life (HR-QoL), namely, global health status (as measured by EORTC-QLQ-C30), dietary restrictions (derived from EORTC-QLQ-OG25), and anxiety (also evaluated using EORTC-QLQ-OG25). The rationale for this selection is grounded in previous research, which has established correlations between these HR-QoL domains and diverse informational needs among patients with esophageal cancer and other types of malignancies [3, 4, 14, 15, 27–29].

The global health status domain encapsulates the cumulative scores from two queries, with responses extending from (1) very poor to (7) excellent. The domains concerning dietary restrictions and anxiety encompass questions with answer choices ranging from (1) not at all to (4) very much. To standardize these results, the responses of these domains were linearly transformed into 0–100 scores [30]. A higher score in global health status represents better global health status and a higher score in eating restrictions and anxiety represents more eating restrictions and more anxiety, respectively.

Statistical Analysis

Differences in patient, tumor, and treatment characteristics were analyzed using Student’s t test, which was presented as mean values with corresponding standard deviations. For data not conforming to a normal distribution, the Mann-Whitney U test was used, with outcomes expressed as medians alongside interquartile ranges. Categorical baseline variables were analyzed using χ2 test and Fisher’s exact test as appropriate. Univariable linear regression analysis was used to evaluate the differences in information needs between patients with or without postoperative complications at three time points: at 6–12 months, at 18–24 months, and at 3–5 years follow-up. The percentage of patients who reported to have received no information at all was calculated for all seven information needs items and compared with the percentage of patients who reported to have received at least a little of information at baseline, at 6–12 months, at 18–24 months, and at 3–5 years follow-up. The difference in information needs between male and female patients, and the association between information needs and HR-QoL domains global health status, eating restrictions, and anxiety, were investigated at baseline, at 6–12 months, at 18–24 months, and at 3–5 years follow-up, using univariable linear regression analysis. To account for multiple testing, all p values were adjusted using the Bonferroni correction method, which involved multiplying the original p values by the total number of tests conducted. While the threshold for clinically relevant differences in mean scores can fluctuate across different information needs domains, as per reference [23], a mean score discrepancy exceeding 10 points was deemed clinically significant for this study. This criterion was established based on the presumption that it represents the upper limit for the majority of the information needs domains under consideration. A p value of <0.05 was considered statistically significant. Data were analyzed using SPSS version 26.0 (IBM, Armonk, New York USA).

Results

Patient, Tumor, and Treatment Characteristics

In this study, a total of 531 patients participated. Of these patients, 132 (24.9%) completed the questionnaires at baseline, 216 (40.7%) at 6–12 months follow-up, 184 (34.7%) at 18–24 months follow-up, and 163 (30.7%) at 3–5 years follow-up (Table 1). Notably, out of 531 patients, 24 (4.5%) consistently completed the questionnaires at all designated time points. In terms of sex distribution, males constituted the majority, ranging from 73.5 to 78.8%. At baseline, the majority of patients had GEJ/cardia cancer (43.9%). However, over the course of follow-up periods, patients with distal esophageal cancer emerged as the predominant condition who completed the questionnaires, representing 54.6% of cases at 6–12 months, increasing to 63.0% at 18–24 months, and 71.2% at 3–5 years. The majority of patients at all time points received neoadjuvant chemoradiotherapy (77.2–80.9%) and were operated minimally invasively (73.6–95.8%). Only the minority of patients received adjuvant treatment (19.0–38.4%). The majority of patients, across all time points, remained free from postoperative complications (52.8–59.1%).

Table 1. Baseline characteristics of all patients after esophageal or gastric cancer surgery between 2013 and 2018

	Baseline (N = 132)	6–12 months follow-up (N = 216)	18–24 months follow-up (N = 184)	3–5 years follow-up (N = 163)	
Age, median (IQR), years	67 (60–71)	64 (58–70)	65 (58–71)	64 (58–69)	
Gender, n (%)	
 Male	97 (73.5)	163 (75.5)	145 (78.8)	123 (75.5)	
Tumor location, n (%)	
 Distal esophagus	51 (38.6)	118 (54.6)	116 (63.0)	116 (71.2)	
 Mid esophagus	11 (8.3)	7 (3.2)	2 (1.1)	0 (0.0)	
 GEJ/cardia	58 (43.9)	71 (32.9)	49 (6.6)	38 (23.3)	
 Gastric	12 (9.1)	20 (9.3)	17 (9.2)	9 (5.5)	
Comorbidity, n (%)	
 No	60 (45.5)	112 (51.9)	92 (50.0)	91 (55.8)	
 Cardiovascular	57 (43.2)	79 (36.6)	79 (42.9)	57 (35.0)	
 Pulmonary	15 (11.4)	22 (10.2)	15 (8.2)	17 (10.4)	
 Diabetic	14 (10.6)	23 (10.6)	21 (11.4)	17 (10.4)	
ASA classification, n (%)	
 1	18 (13.6)	58 (26.9)	53 (28.8)	44 (27.0)	
 2	77 (58.3)	110 (50.9)	91 (49.5)	91 (55.8)	
 3	37 (28.0)	48 (22.2)	40 (21.7)	28 (17.2)	
Neoadjuvant therapy, n (%)	
 Yes	114 (86.4)	181 (83.8)	154 (83.7)	141 (86.5)	
Type of neoadjuvant therapy, n (%)	
 CTx	26 (22.8)	47 (26.0)	39 (25.3)	27 (19.1)	
 CRTx	88 (77.2)	134 (74.0)	115 (74.7)	114 (80.9)	
Type of operation, n (%)	
 Ivor-Lewis esophagectomy	79 (59.8)	124 (57.4)	84 (45.7)	48 (29.4)	
 McKeown esophagectomy	25 (18.9)	47 (21.8)	58 (31.5)	91 (55.8)	
 Total gastrectomy	11 (8.3)	20 (9.3)	28 (15.2)	17 (10.4)	
 Subtotal gastrectomy	15 (11.4)	24 (11.1)	14 (7.6)	7 (4.3)	
 Total gastrectomy with distal esophagectomy	2 (1.5)	1 (0.5)	0 (0.0)	0 (0.0)	
Approach, n (%)	
 Minimally invasive	118 (89.4)	207 (95.8)	171 (92.9)	120 (73.6)	
 Open	14 (10.6)	9 (4.2)	13 (7.1)	43 (26.4)	
Adjuvant therapy, n (%)	
 Yes	50 (37.9)	83 (38.4)	52 (28.3)	31 (19.0)	
Type of adjuvant therapy, n (%)	
 CTx	50 (100)	81 (97.6)	50 (96.2)	26 (83.9)	
 CRTx	0 (0.0)	2 (2.4)	2 (3.8)	5 (16.1)	
Postoperative complication, n (%)	
 Yes	54 (40.9)	93 (43.0)	86 (46.7)	77 (47.2)	
Highest severity of complicationa, n (%)	
 Grade 1	8 (6.1)	16 (7.4)	8 (4.3)	8 (4.9)	
 Grade 2	17 (12.9)	28 (13.0)	26 (14.1)	33 (20.2)	
 Grade 3A	11 (8.3)	22 (10.2)	26 (14.1)	11 (6.7)	
 Grade 3B	2 (1.5)	3 (1.4)	0 (0.0)	0 (0.0)	
 Grade 4A	13 (9.8)	22 (10.2)	23 (12.5)	21 (12.9)	
 Grade 4B	1 (0.8)	2 (0.9)	3 (1.6)	4 (2.5)	
 Grade 5	2 (1.5)	0 (0.0)	0 (0.0)	0 (0.0)	
Type of complication, n (%)	
 Atrial fibrillation	22 (40.7)	28 (30.1)	33 (38.8)	28 (36.8)	
 Anastomotic leakage	16 (29.6)	26 (28.0)	32 (37.6)	27 (35.5)	
 Pneumonia	8 (14.8)	12 (12.9)	21 (24.7)	23 (30.3)	
 Other	28 (51.9)	54 (58.1)	37 (43.5)	27 (35.5)	
Disease recurrence, n (%)	
 Yes	22 (16.7)	19 (8.8)	7 (3.8)	2 (1.2)	
ASA, American Society of Anesthesiologists Classification; GEJ, gastroesophageal junction; CTx, chemotherapy; CRTx, chemoradiotherapy.

aAccording to Clavien-Dindo classification.

Information Needs of All Patients following Esophageal and Gastric Cancer Surgery

The highest percentage of patients who reported not to have received information at all was in the domain “things they can do to help themselves get well” (18.1%–23.5%) (Table 2). The percentage of patients who did not find the overall received information helpful at all ranged from 0% to 1.4%.

Table 2. Reported information received by patients following esophageal and gastric cancer surgery at baseline, at 6–12 months, at 18–24 months, and at 3–5 years follow-up

EORTC QLQ-INFO25 questions	The amount of information received	Baseline (N = 132)	6–12 months (N = 216)	18–24 months (N = 184)	3–5 years (N = 163)	
N	%	N	%	N	%	N	%	
1. The diagnosis of your disease?	(1) Not at all	1	0.8	4	1.9	8	4.3	3	1.8	
(2) A little, (3) quite a bit, or (4) very much	131	99.2	212	98.1	176	95.7	160	98.2	
2. Whether the disease is under control?	(1) Not at all	22	16.7	17	7.9	16	8.7	12	7.4	
(2) A little, (3) quite a bit, or (4) very much	110	83.3	199	92.1	168	91.3	151	92.6	
3. The results of the medical tests you have already received?	(1) Not at all	2	1.5	10	4.6	12	6.5	8	4.9	
(2) A little, (3) quite a bit, or (4) very much	130	98.5	206	95.4	172	93.5	155	95.1	
4. The medical treatment (chemotherapy, radiotherapy, surgery, or other treatment modality)?	(1) Not at all	6	4.5	8	3.7	12	6.5	12	7.4	
(2) A little, (3) quite a bit, or (4) very much	126	95.5	208	96.3	172	93.5	151	92.6	
5. The expected benefit of the treatment?	(1) Not at all	9	4.5	10	4.6	9	4.9	7	4.3	
(2) A little, (3) quite a bit, or (4) very much	126	95.5	206	95.4	175	95.1	156	95.7	
6. Things that you can do to help yourself get well (e.g., rest, contact with others)?	(1) Not at all	31	23.5	39	18.1	36	19.6	38	23.3	
(2) A little, (3) quite a bit, or (4) very much	101	76.5	177	81.9	148	80.4	125	76.7	
7. Overall has the information you have received been helpful?	(1) Not at all	0	0.0	3	1.4	1	0.5	1	0.6	
(2) A little, (3) quite a bit, or (4) very much	132	100	213	98.6	183	99.5	162	99.4	

Baseline and Treatment Characteristics and Information Needs of Patients with or without Postoperative Complications

Comparing the group who experienced postoperative complications to those without postoperative complications, a significantly higher rate of pulmonary comorbidity was observed at 3–5 years of follow-up (15.6% vs. 5.8%, p = 0.042) (online suppl. Table 1; for all online suppl. material, see https://doi.org/10.1159/000540439). Furthermore, at baseline and at 18–24 months follow-up, relatively more patients with postoperative complications had undergone a McKeown esophagectomy compared to patients without complications (31.5% vs. 10.3%, p < 0.001, and 39.5% vs. 24.5%, p = 0.005). At 3–5 years follow-up, when comparing patients with postoperative complications versus those without postoperative complications, the proportion of patients who had undergone an Ivor-Lewis esophagectomy was greater in the complication group compared to the non-complication group (33.8% vs. 25.6%, p = 0.021).

Univariable linear regression analysis of information needs between patients with or without postoperative complications showed that none of the information needs domains were found to be statistically or clinically different between the two groups at 6–12 months, at 18–24 months, and at 3–5 years follow-up (Table 3; online suppl. Table 2).

Table 3. Univariable linear regression analysis of information needs between patients with or without postoperative complications following esophageal or gastric cancer surgery at 6–12 months, at 18–24 months, and at 3–5 years follow-up

EORTC QLQ-INFO25 domains		Univariable linear regression	
6–12 months	18–24 months	3–5 years	
N range:	116–122	87–90	94–98	83–86	80–84	71–75	
Complications:	no	yes	no	yes	no	yes	
Information about the disease	Mean	55.9	60.1	56.8	59.0	60.7	61.5	
SD	22.9	19.0	23.7	23.4	23.0	24.0	
p value	0.800	2.655	4.200	
Information about medical tests	Mean	63.1	65.0	60.9	59.3	63.1	62.2	
SD	26.3	24.5	27.1	25.9	27.8	26.9	
p value	2.980	3.425	4.190	
Information about treatments	Mean	56.3	56.1	56.4	53.0	59.2	55.9	
SD	23.8	22.0	24.6	23.9	25.9	25.9	
p value	4.800	1.790	2.125	
Information about things you can do to help yourself	Mean	44.5	41.7	40.7	43.8	37.5	42.0	
SD	30.3	29.2	31.6	29.9	27.7	34.1	
p value	2.485	2.535	1.885	
Overall the information was helpful	Mean	69.2	70.6	68.3	68.8	73.3	69.0	
SD	23.7	20.6	22.0	21.9	21.4	23.9	
p value	3.345	4.295	1.230	
All p values were corrected using the Bonferroni method for multiple testing. SD, standard deviation.

Baseline and Treatment Characteristics and Information Needs of Male and Female Patients

Comparing male patients to female patients, a significantly higher rate of male patients had undergone an Ivor-Lewis esophagectomy at baseline and at 6–12 months (66.0% vs. 42.9%, p = 0.033, and 63.2% vs. 39.6%, p = 0.002) (online suppl. Table 3). Neoadjuvant therapy was significantly more often administered to male patients compared to female patients in the 18–24 months follow-up group (86.9% vs. 71.8%, p = 0.023). Moreover, a significantly lower rate of female patients received adjuvant therapy compared to male patients in the baseline group (22.9% vs. 43.3%, p = 0.033).

At baseline, the univariable linear regression analysis of information needs scores revealed that male patients indicated they had been provided with more information about the things they can do to help themselves compared to their female counterparts, with a clinically relevant difference in mean scores of 10.3 points. However, this difference was not statistically significant. No statistically significant or clinically relevant differences in information needs between male and female patients were found at 6–12 months, at 18–24 months, and at 3–5 years follow-up (Table 4; online suppl. Table 4).

Table 4. Univariable linear regression analysis of information needs between male and female patients following esophageal or gastric cancer surgery at baseline, at 6–12 months, at 18–24 months, and at 3–5 years follow-up

EORTC QLQ-INFO25 domains		Univariable linear regression	
baseline	6–12 months	18–24 months	3–5 years	
N range:	32–35	92–96	49–52	154–160	37–39	141–145	38–39	113–120	
Gender:	female	male	female	male	female	male	female	male	
Information about the disease	Mean	58.4	53.8	59.3	57.1	62.1	56.7	66.1	59.5	
SD	24.7	23.5	22.7	20.9	25.6	22.8	26.7	22.1	
p value	1.630	2.645	1.005	0.840	
Information about medical tests	Mean	65.8	60.3	67.6	62.7	60.7	60.1	69.4	60.5	
SD	24.8	24.6	23.0	26.2	25.2	26.9	27.3	27.1	
p value	1.330	1.160	4.480	0.415	
Information about treatments	Mean	49.4	51.7	57.7	55.8	56.1	54.5	59.4	57.1	
SD	23.0	24.7	23.4	22.9	26.3	23.8	30.4	24.4	
p value	3.225	3.040	3.550	3.360	
Information about things you can do to help yourself	Mean	28.4	38.8	41.5	43.9	38.7	43.0	34.2	41.4	
SD	24.8	30.6	32.3	29.0	30.9	30.7	34.2	29.6	
p value	0.400	3.100	2.260	1.065	
Overall the information was helpful	Mean	71.6	68.2	68.3	70.3	72.5	67.5	73.5	70.5	
SD	20.3	23.6	21.7	22.6	23.6	21.4	24.4	22.1	
p value	2.335	2.925	1.075	2.360	
All p values were corrected using the Bonferroni method for multiple testing. SD, standard deviation.

Information Needs and HR-QoL

After univariable linear regression analysis, patients with higher global health status indicated they had received more information about medical tests (p = 0.001) and more information about treatments (p = 0.008) at 18–24 months follow-up (Table 5). Also, they more often reported that overall, the information was helpful at 6–12 months (p < 0.001), at 18–24 months (p < 0.001), and at 3–5 years (p = 0.001) follow-up. Patients with more eating restrictions reported they had received less information about things that they could do to help themselves at 18–24 months (p = 0.005) and at 3–5 years (p = 0.007) follow-up. Patients with more anxiety reported that the information was more helpful at 18–24 months (p = 0.009) and at 3–5 years (p < 0.001) follow-up. However, none of these results were clinically relevant as the mean score differences were less than 10 points.

Table 5. Association between information needs and global health status domain (EORTC QLQ-C30), eating restrictions domain (EORTC QLQ-OG25), and anxiety domain (EORTC QLQ-OG25) following esophageal or gastric cancer surgery

EORTC QLQ-INFO25 domains		Global health status	Eating restrictions	Anxiety	
baseline	6–12 months	18–24 months	3–5 years	baseline	6–12 months	18–24 months	3–5 years	baseline	6–12 months	18–24 months	3–5 years	
Information about the disease	B	0.2	0.2	0.2	0.1	−0.04	0.02	−0.1	−0.1	−0.1	−0.1	−0.1	−0.1	
p value	0.550	0.090	0.062	0.897	3.086	4.095	0.453	2.613	1.374	0.533	0.426	1.251	
Information about medical tests	B	0.2	0.3	0.4	0.1	−0.03	0.03	−0.1	−0.04	0.01	−0.04	−0.2	−0.1	
p value	0.343	0.030	0.001*	2.106	3.564	3.539	1.177	3.157	4.748	2.820	0.044	0.307	
Information about treatments	B	0.2	0.2	0.3	0.1	−0.1	0.01	−0.1	−0.01	−0.1	−0.1	−0.2	−0.1	
p value	0.420	0.025	0.008*	1.682	2.634	4.418	1.225	4.592	0.225	0.988	0.047	2.145	
Information about things you can do to help yourself	B	0.1	0.2	0.3	0.1	−0.1	−0.1	−0.3	−0.3	0.004	−0.05	−0.2	−0.1	
p value	2.826	0.172	0.258	1.449	1.555	3.085	0.005*	0.007*	4.826	2.867	0.558	0.463	
Overall the information was helpful	B	0.1	0.4	0.4	0.3	0.1	−0.1	−0.1	−0.2	−0.1	−0.1	−0.2	−0.2	
p value	0.863	<0.001*	<0.001*	0.001*	2.338	1.173	0.283	0.020	1.226	0.892	0.009*	<0.001*	
All p values were corrected using the Bonferroni method for multiple testing.

B, regression coefficient.

*Significant p value.

Discussion

This study investigated the information needs in potentially curable gastroesophageal cancer patients in a tertiary referral center. These results show that patients with or without complications did not report different information needs at 6–12 months, at 18–24 months, and at 3–5 years follow-up. At baseline, male patients reported they had received more information about the things they could do to help themselves compared to female patients. This difference, however, was not statistically significant. Furthermore, a higher global health status and more anxiety were positively associated, whereas having more eating restrictions was negatively associated with various information needs domains. Overall, most patients reported they found the received information at least a little bit helpful, but almost a quarter of all patients reported they did not receive any information about the things that they could do to help themselves. It was recently found that in order to improve information transmission, certain methods of information provision may be recommended, such as considering the effect of positive and negative framing, using visual forms of explanation during decision-making and the use of explicit and affective communication [31, 32]. Whether medical practitioners who treat gastroesophageal cancer patients need to be instructed on how to provide better information is currently being researched (NCT04232735) [33].

Very few studies investigated information needs of gastroesophageal cancer patients, and, additionally, information needs between patients with or without complications have not previously been studied [12–15]. The results of the current study are not directly comparable with the results of previous studies on information needs because of different inclusion criteria and endpoints. Possible explanations for the absence of any observed differences in information needs between patients with or without complications in our study could be because of the relatively small sample size or the limited number of patients with major complications. In contrast to our study, previous studies that investigated information needs in patients with other cancers did not specify the severity of postoperative complications according to the Clavien-Dindo classification [18, 34]. Therefore, future studies should include such classifications and employ larger sample sizes to be able to test the hypothesis that major postoperative complications have a greater impact on information needs than minor or no complications.

This is the first study investigating the difference in information needs between male and female gastroesophageal cancer patients. The association between information needs and gender has been investigated in patients with various other cancers. In a multicenter study with a total of 4,020 cancer patients, small differences in information needs between male and female patients were found [4]. This study assessed information needs using six items including information needs concerning diagnosis of cancer, recovery chance, the course of the disease, treatment options, complications, and psychosocial support. Men indicated feeling less informed about psychosocial support, whereas women tended to seek more information on this subject. The absence of significant differences might be attributed to the underrepresentation of female patients in our study (21.2–26.5%) compared to 51% in the multicenter study.

In a recent study, an association was found between various information needs domains and two HR-QoL domains (global QoL and anxiety) in patients with esophageal cancer [15]. A higher global QoL score was found to be associated with more satisfaction with the received information and with receiving more information about things patients can do to help themselves. Patients who reported more anxiety indicated they had received more information about the disease; however, more anxiety was also associated with receiving less information about things that you can do to help yourself. In our study, we also found a significant association between information needs and global health status and anxiety but only with certain information needs domains (information about medical tests, information about treatments, overall the information was helpful, and information about things that they can do to help themselves). Additionally, we observed that patients experiencing greater eating restrictions indicated receiving limited information about things that they could do to help themselves. Nonetheless, the findings might not be directly comparable, as our study focused on patients treated with curative intent, while the prior study encompassed those treated with both curative and palliative intents.

This study has some limitations. This prospective comparative cohort study is prone to selection bias as some of the esophageal and gastric cancer patients did not complete the questionnaires. Clinical information of non-respondents is unknown; therefore, a non-respondent analysis could not be performed. Furthermore, the included patients were operated between 2013 and 2018 and in this time period some changes were implemented in the treatment of patients with esophageal or gastric cancer including the introduction of minimally invasive surgery, (neo)adjuvant treatment, and enhanced recovery after surgery programs. Also, all cohorts partly overlap as all patients completed the questionnaires at one or multiple time points. Similarly, the total number of patients who completed the questionnaires at all designated time points was insufficient to support the exploration of a longitudinal analysis, which could have provided more insightful information for patients. Furthermore, we did not conduct a multivariable analysis since our goal was to explore the information needs of a naturally occurring cohort of esophageal and gastric cancer patients. As a result, we made no adjustments for variances between the groups. Moreover, the decision to dichotomize responses into “not at all” versus “a little to very much,” rather than merging “not at all” and “a little,” was made to differentiate between complete absence and minimal information presence. However, it is worth noting that minimal perceived information might practically equate equivalent to the absence of information, inviting further discussion. Lastly, it is important to acknowledge the accelerated digital era’s influence on health information accessibility. The widespread availability of online health information could influence patients’ expectations and perceptions of the information provided by healthcare professionals. Future research should consider the impact of patients’ online information-seeking behavior on their reported needs and satisfaction with the information received from healthcare providers.

Conclusion

The findings of this study indicate that gastroesophageal cancer patients, irrespective of postoperative complications or gender, have consistent information needs. There is, however, an association between information needs and HR-QoL: those with a higher global health status or heightened anxiety found the information more beneficial, while patients with increased eating restrictions felt they were provided with insufficient guidance on self-help measures. This study provides insight into which information patients report to have received and highlights areas where further information is desired. The subsequent challenge lies in delivering comprehensive information that is both understandable and acceptable to patients. Future research should delve into optimizing information delivery for gastroesophageal cancer patients.

Statement of Ethics

All procedures performed in this study involving human participants were by the ethical standards of the institutional and research committee and with the 1964 Helsinki Declaration and its later amendments. The ethical approval of this study was waived by the Institutional Review Board of Amsterdam UMC. Written informed consent was provided by all participants.

Conflict of Interest Statement

M.I.v.B.H. is consultant for Alesi Surgical, BBraun, Johnson and Johnson, Medtronic, and Viatris and received research grants from Stryker paid to the institute. No funding was received for this study. The other authors have no conflicts of interest or financial ties to disclose.

Funding Sources

No funding was received for this research.

Author Contributions

Concept and design: K.K., E.J., W.J.E., M.I.v.B.H., and S.S.G. Acquisition, analysis, and interpretation of the data and critical revision of the manuscript for important intellectual content: all authors. Drafting of the manuscript: K.K., E.J., W.J.E., M.I.v.B.H., and S.S.G. Statistical analysis: K.K. and E.J. Supervision: M.A.G.S., W.J.E., M.I.v.B.H., and S.S.G. All authors read and approved the final manuscript.

Data Availability Statement

The data supporting this study’s findings are not publicly available due to the privacy of research participants. However, the data are available from the corresponding author (S.S.G.) upon reasonable request.

Supplementary Material
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