Providing appropriate information to cancer patients can result in a better sense of control over their disease and a better health-related quality of life (HRQoL) and in making better informed treatment decisions.1 However, many cancer patients report to be dissatisfied with the information they have received.2,3 Dissatisfaction with received information might be caused by the assumption or misunderstanding of the healthcare practitioner (HCP) about the information needs of the patient, resulting in inappropriate information provision (ie, too much information, too little information, too complex information, etc).4 Other causes of dissatisfaction may be a lack of empathy from an HCP, time constraints leading to unanswered questions,3 or the use of unclear medical jargon.5 Dissatisfaction with the information provided by the HCP may be a reason for cancer patients to seek health information on the Internet.2,3
Dissatisfaction with care, including information provision and communication, is associated with higher levels of anxiety and depression.6,7 Two studies found that posttreatment depression in cancer patients is influenced by satisfaction with and level of received information.8,9 This relationship can be bidirectional. Inappropriate information provision could make cancer patients feel more depressed and anxious. It is, however, also possible that patients are already depressed and/or anxious before they receive information, which will hinder the perception of information.10 Anxiety is associated with an attention bias toward threat-relevant information and disruptions in understanding,11,12 and depression is correlated with concentration problems.13 Patients reporting higher levels of anxiety and/or depression may therefore have problems with understanding or processing information from the HCP. In this scenario, cancer patients could become dissatisfied with information because of their anxious and/or depressive symptoms. Both scenarios could lead to an increased use of the Internet to seek for additional disease-related information.2,3,14 Online information seeking of anxious and depressed cancer patients may help them to recollect and update lost information, gain a satisfactory amount of information for those who are dissatisfied with received information, or to gain a sense of control over their disease.4,15 Because data on the relationship between levels of anxiety, depression, and information satisfaction and Internet use are scarce, this study aims to investigate the relationship between these concepts (Figure). These relationships will be investigated among a large group of cancer patients with different tumor types, which is unique looking at the current literature. Knowledge of possible relationships between these factors is of importance because satisfactory information provision can result in a better HRQoL.
Setting and Participants
In this secondary analysis, data from several large population-based surveys on survivors of endometrial cancer, colorectal cancer, Hodgkin and non-Hodgkin lymphoma, and multiple myeloma from the PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship) registry were used.16 These studies were set up in 2008 and 2009 using data from the Eindhoven Cancer Registry (ECR; www.eindhovencancerregistry.nl) and were designed to evaluate various patient-reported outcomes (eg, late effects, physical and mental health status) among cancer survivors.
The ECR compiles data of all individuals newly diagnosed with cancer in the southern part of the Netherlands, an area with 10 hospitals serving 2.3 million inhabitants.17 All individuals diagnosed with endometrial cancer (stage I or II)18 or colorectal cancer from 1998 to 200719,20 and all individuals diagnosed with Hodgkin, non-Hodgkin lymphoma, or multiple myeloma21 from 1999 to 2008 as registered in the ECR were eligible for participation. However, because of the large number of colorectal cancer survivors (n = 5399), a weighted random selection of 2219 patients based on tumor, sex, and year of diagnosis was made.19,20 After excluding those patients who had cognitive impairment, had died prior to start of study (according to the ECR, the Central Bureau for Genealogy, which collects information on all deceased Dutch citizens via the civil municipal registries and hospital records), or had unverifiable addresses, data collection started in 2008 and 2009. All studies were approved by a medical ethics committee. Data from these studies will become available for noncommercial scientific research, subject to study question, privacy and confidentiality restrictions, and registration (www.profilesregistry.nl).
Details of the data collection method have been previously described.22 In summary, survivors were informed of the study via a letter from their (ex-)attending specialist. The letter explained that by completing and returning the questionnaire, patients consented to participate in the study and agreed to the linkage of the questionnaire data with their disease history in the ECR. Patients were reassured that nonparticipation had no consequences for their follow-up care or treatment. Nonrespondents were sent a reminder letter and questionnaire within 2 months.
To evaluate the information received by HCPs from patients, the European Organisation for Research and Treatment of Cancer Quality of Life Group Information (EORTC QLQ-INFO25) questionnaire was used. The EORTC QLQ-INFO25 consists of 25 items, grouped into 4 information provision subscales: perceived receipt of information about the disease (α = .75), medical tests (α = .90), treatment (α = .86), and other care services (α = .80) and some additional single items about satisfaction with, amount of, and helpfulness of information. All responses were according to a 4-point Likert scale, except 4 items that had a 2-point scale. All scales were linearly converted to a 0- to 100-point scale, with higher scores indicating better perceived information provision. Internal consistency for all scales is good (α > .70), as is test-retest reliability (intraclass correlations >0.70).23
Apart from the EORTC QLQ-INFO25 questionnaire, 2 questions about the use of Internet for additional information were used: “Do you make use of the Internet? (Yes or no)” and “Did you use the Internet to obtain disease-related information? (Yes, daily; yes, weekly; yes, monthly; no).” The last question was dichotomized into an Internet use and no Internet use category.
DEPRESSION AND ANXIETY
The Dutch version of the Hospital Anxiety and Depression Scale (HADS) was used to measure the extent of depression and anxiety.24 The HADS includes an anxiety and a depression scale, which both consist of 7 items. All items were scored on a 0- to 3-point scale, with higher scores indicating more symptoms. A sum score was calculated for both scales, which can range from 0 to 21. A cut off score of 8 was used for indicative symptoms of anxiety and depression and divided the group in 2 categories (score ≥8 = depressive symptoms, score <8 = no depressive symptoms; the same for anxiety).24 Reliability for both the anxiety and depression scales was good (α = .83 and α = .78, respectively).
PATIENT AND TUMOR CHARACTERISTICS
Data on patient and tumor characteristics were obtained from the ECR.17 The ECR routinely collects data on tumor characteristics, including date of diagnosis, tumor grade according to the tumor-node-metastasis clinical classification,25 clinical stage,25 treatment, and patient background characteristics including date of birth and comorbidity at the time of diagnosis. Comorbidity at the time of survey was categorized according to the adapted Self-administered Comorbidity Questionnaire.26
Routinely collected data from the ECR on patient and tumor characteristics enabled us to compare the group of respondents and nonrespondents using t tests for continuous variables and χ2 analyses for categorical variables. Patients were divided into 4 groups (both depressive and anxious symptoms, no symptoms of anxiety and/or depression, only symptoms of depression, only symptoms of anxiety), and analyses of variance (ANOVAs) were conducted to compare the groups on information provision and χ2 tests to compare groups on Internet use characteristics. Bonferroni post hoc tests were performed when a significant group effect was found with ANOVA.
Multivariate logistic regression analyses were performed with satisfaction with received information, helpfulness of received information, and disease-related Internet use as dichotomous outcome measures. These outcomes were therefore categorized into 2 groups: (a) patients who were unsatisfied or a little satisfied were classified as unsatisfied, and (b) patients who were quite satisfied or very satisfied were classified as satisfied. The same categorization was used with regard to the helpfulness of information. In the analyses, we corrected for age, years since diagnosis, gender, comorbidity, marital status, current occupation, educational level, and type of tumor (based on a priori assumptions).27 All statistical test were 2-sided and considered significant if P < .05. All analyses were conducted using SPSS version 19.0 (Statistical Package for Social Sciences, Chicago, Illinois).
Patient and Tumor Characteristics
Three thousand eighty (69%) patients returned a completed questionnaire. Characteristics of nonrespondents have been described before.16 Nonrespondents were more often female and were less often treated with radiotherapy or chemotherapy.
Sociodemographic and clinical characteristics of cancer survivors, according to tumor type are presented in Table 1. Overall, 20% of the cancer patients (n = 587) were experiencing depressive symptoms (HADS >8), 22% of the patients (n = 636) were experiencing symptoms of anxiety, and 12% of the patients (n = 344) were experiencing both anxious and depressive symptoms. Colorectal cancer and multiple myeloma patients more often reported to have depressive symptoms than lymphoma and endometrial cancer patients.
Differences in Perceived Information Provision
When respondents were categorized into 4 groups (no anxious or depressive symptoms, only depressive symptoms, only anxious symptoms, and both anxious and depressive symptoms) (Table 2), ANOVA showed that patients who felt both depressed and anxious, or patients who felt only anxious, reported to have received less information about their disease, medical tests, and their treatment (P < .001 for all). Cancer patients who felt depressed and anxious or who felt only depressed were all less satisfied with information received compared with cancer patients without depressive or anxious symptoms (P < .001 for all). For people who only felt anxious, no significant differences were found as opposed to people with no depressive or anxious symptoms.
χ2 Tests showed that cancer survivors with depressive symptoms reported to make less use of the Internet, both in general and for disease-related reasons.
Factors Associated With Perceived Information Provision
After correction for confounding variables, the multivariate logistic regression analyses showed (Table 3) that having symptoms of anxiety was negatively associated with helpfulness of received information (P < .05). No significant relationship was found between symptoms of anxiety and satisfaction with information and between experiencing symptoms of anxiety and disease-related Internet use.
Having depressive symptoms was negatively associated with satisfaction with information, perceived helpfulness of received information, and with disease-related Internet use (P < .001 for all).
Experiencing both depressive and anxious symptoms was negatively associated with satisfaction with information as well as with perceived helpfulness of received information (P < .001 for both). No relationship was found between experiencing both depressive and anxious symptoms and disease-related Internet use.
This study among 3 080 cancer patients showed that depressive and anxious symptoms are associated with lower satisfaction with received information and with perceived helpfulness of information. It also showed that depressive symptoms among cancer patients are associated with less Internet use in cancer patients.
Our results are in accordance with previous studies on satisfaction with HCPs care and communication showing that (symptoms of) anxiety and depression were associated with lower levels of satisfaction with care.6,28 However, neither of these 2 studies specifically focused on satisfaction with and helpfulness of information received. Two previous longitudinal studies indicated that depression could be predicted by satisfaction with information received8,9; however, the potential relationship between anxiety and satisfaction with information was not studied. In addition to these smaller studies, the current study showed that both anxious and depressive symptoms were correlated with lower satisfaction with information and helpfulness of information received. An explanation for the fact that some cancer patients are less satisfied with received information may be that they have concentration problems or attention bias due to their anxious and/or depressive symptoms. Therefore, they may not be able to encode or recall all the information they received11,13,29 and are therefore less satisfied with the information and with the helpfulness of information. Another explanation could be that some cancer patients are unsatisfied with the information and the helpfulness of this information and as a consequence of their dissatisfaction start experiencing symptoms of depression or anxiety.
Two longitudinal studies8,9 suggest that both explanations/directions might be true. Depression was caused not only by unsatisfactory information provision, but also by baseline depression. This might indicate that cancer patients already feel depressed at the moment they receive information (eg, due to the impact of their cancer diagnosis) and therefore are not able to pick up all the information that is provided and consequently become unsatisfied with the information they received. This dissatisfaction may consequently lead to more severe symptoms of depression. The relationship between dissatisfaction and anxious and/or depressive symptoms might thus be bidirectional.
Furthermore, the extent of (dis)satisfaction can be influenced by the content of the information that is given. If the HCP has to bring “bad news,” this can more easily lead to depressive or anxious symptoms than “good news.” Also, the way in which the HCP communicates the news is important. Healthcare practitioners possibly communicate differently to patients with anxious/depressive symptoms than to patients who are mentally healthy. Furthermore, the moment of providing information might influence the extent of satisfaction with the information. The relationship between dissatisfaction and perceived dissatisfactory information may also work the other way around: people who are more dissatisfied in general (type D personality) will value information more often as dissatisfactory.30
Another factor that might influence both (dis)satisfaction and anxious/depressive symptoms is coping style. People with a blunting coping style tend to avoid possible painful information, whereas people with a monitoring coping style are more attracted to such information.31 The results are, however, ambiguous on whether coping style provides higher levels of satisfaction. Some studies show that cancer patients with a blunting coping style were more satisfied with information than patients with a monitoring coping style.32 Other studies found that high monitors preferred to receive more detailed information and that people with a high monitoring score asked more questions during a consultation, which might indicate they receive or collect more information.31,33,34 This might also explain the higher level of dissatisfaction among people with a monitoring coping style. They prefer more and more detailed information and are thus dissatisfied with the standard general information provision.31 Depending on the content of the information and the moment of information seeking, this could result in satisfaction or dissatisfaction and/or maybe depressive or anxious symptoms among patients with a monitoring coping style. On the other hand, it is be possible that symptoms of depression and anxiety influence one’s coping style, which can influence (dis)satisfaction with information.
The results of the current study indicate that information provision currently is suboptimal. Independently of the direction of the relationship between depressive and/or anxious symptoms and dissatisfaction with information, information provision should be better adjusted to the individual needs of cancer patients. In future studies, it should be investigated on which subjects cancer patients want (more or less) information.
Regarding Internet use and depressive and anxious symptoms, our results are in contrast to previous studies, which found that anxious and depressed people were more active on the Internet.14 In the current study no relationship was found between anxious symptoms and disease-related Internet use. We did, however, found a negative association between depressive symptoms and disease-related Internet use. This negative association between might be due to the fact that the study population consisted of cancer patients only. They may avoid the Internet in order to protect themselves from feeling more depressed by reading threatening disease-related information. Furthermore, depressed patients are commonly known for their lack of interest in almost all aspects of life and their lack of energy, which may prevent them from going online.13 Another explanation could be that Internet use prevents cancer patients from getting depressive symptoms, for example, by making patients feel better informed as the Internet provides the possibility to empower patients, which may increase their sense of control over their disease.15 Future studies should investigate the direction of the relationship between depressive symptoms and Internet use to reveal a possible preventive effect of disease-related Internet use.
The present study has some limitations that should be mentioned. Although the response rate was high and information was present concerning demographic and clinical characteristics of the nonrespondents, whether nonrespondents declined to participate in the study because of poor mental health remains unknown. Second, the cross-sectional study design limits determination of causal relationships between satisfaction with information, Internet use, and depression and anxiety. Therefore, longitudinal studies are needed to investigate whether anxious and depressive symptoms are the cause or consequence of unsatisfactory information, or both, and to investigate the relationship between anxiety/depression and the content of information or the way of communication. Furthermore, it would be interesting for future studies to get insight into the kind of Internet sites patients visit to find more information about their disease.
Despite these limitations, the present study provides an important contribution to the limited data available on the relation between satisfaction with information and Internet use and depressive and anxious symptoms. Because this is a large population-based study with a high response rate, extrapolating these results to the larger population of colorectal cancer, endometrial cancer, lymphoma, and multiple myeloma survivors seems justified.
More research is needed to investigate the direction of the relationship between anxiety and depression, satisfaction with information, content of information, and the when and how of information provision and the effect of coping style on this relationship. For now, the most important implication is that HCPs need to optimally adjust their information provision to the patients’ needs to satisfy the patient.35 Information needs vary by sex, age, cultural background, time since diagnosis, partnership, educational level, stage of the disease, personality, and adjustment style.30,36 Our study shows that sociodemographic (educational level, marital status, age, sex) and clinical characteristics (tumor type, comorbid conditions, time since diagnosis) are also related to the satisfaction with and helpfulness of the received information and the use of Internet for additional information. The best way to unravel the information needs of a patient is to consult the patient. Furthermore, HCPs must check the understanding of the patient.37 It is necessary to regularly check what the patient has understood38 and whether the information was helpful.39 When necessary, the HCP must repeat the information several times, both between and within consultations.40 Cancer patients may not always be able to retain and process information because they may be emotionally overwhelmed41,42 or impaired in their cognitive capability or deny their disease as a coping strategy to retain hope.43,44 Therefore, the timing and the way information is provided are important factors to take into account.
Another implication for HCPs is to be more attentive to anxious/depressive symptoms. Early detection of these symptoms might help in providing information that fits the patient’s need, which ultimately leads to better informed patients and a better HRQoL.
In conclusion, the present study has demonstrated negative associations between depression and anxiety and satisfaction with information provision, and a negative association between depression and disease-related Internet use. The results indicate that more attention should be paid to optimally adjust the information provision to the individual needs of the cancer patients for better mental health.
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