J Cancer Surviv DOI 10.1007/s11764-015-0451-1
Satisfaction with information and unmet information needs in men and women with cancer Hermann Faller 1 & Uwe Koch 2 & Elmar Brähler 3,4 & Martin Härter 2 & Monika Keller 5 & Holger Schulz 2 & Karl Wegscheider 6 & Joachim Weis 7 & Anna Boehncke 7 & Bianca Hund 8,9 & Katrin Reuter 9 & Matthias Richard 1 & Susanne Sehner 6 & Carina Szalai 3,10 & Hans-Ulrich Wittchen 11 & Anja Mehnert 2,3
Received: 29 January 2015 / Accepted: 8 April 2015 # Springer Science+Business Media New York 2015
Abstract Purpose Information needs in cancer patients are high but often not fulfilled. This study aimed to examine the level of perceived information, information satisfaction, and unmet needs in a large sample of cancer patients. Further, we explored associations with emotional distress and quality of life accounting for gender. Methods In a multicenter, cross-sectional study in Germany, 4020 cancer patients (mean age 58 years, 51 % women) were evaluated. We obtained self-reports of information level, information satisfaction, and unmet needs, measured depressive symptoms with the Patient Health Questionnaire (PHQ-9), symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7), and health-related quality of life with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30).
Results Seventy-two to 88 % of participants reported to be well informed regarding various aspects of their disease, except of psychological support (38 %). However, unmet information needs were also prevalent in 36 to 48 %. Gender differences found were generally small. Although men felt less informed about psychological support, they expressed fewer needs for further information regarding this topic. Irrespective of gender, patients who were less satisfied with information received and had more unmet needs reported more anxiety, depression, and lower quality of life. Up to three quarters of those classified as most severely distressed reported unmet needs for information about psychological support. Conclusions In this largest study to date, we found high levels of both information received and satisfaction with information, but also considerable amounts of unmet needs, particularly regarding psychological support.
* Hermann Faller [email protected]
5
Division of Psychooncology, Department for Psychosomatic and General Clinical Medicine, University Hospital Heidelberg, Im Neuenheimer Feld 155, 69120 Heidelberg, Germany
6
Department of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
7
Department of Psychooncology, Tumor Biology Center, University of Freiburg, Breisacher Strasse 117, 79106 Freiburg, Germany
Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
8
Rhein-Jura Klinik, Bad Säckingen, Germany
9
Department of Psychiatry and Psychotherapy, University Medical Center Freiburg, Hauptstrasse 5, 79104 Freiburg, Germany
Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Philipp-Rosenthal-Strasse 55, 04103 Leipzig, Germany
10
Psychosocial Counselling Center for Cancer Patients, Schlobigplatz 23, 08056 Zwickau, Germany
11
Institute of Clinical Psychology and Psychotherapy and Center of Clinical Epidemiology and Longitudinal Studies (CELOS), Technical University Dresden, Chemnitzer Strasse 46, 01187 Dresden, Germany
1
2
3
4
Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070 Würzburg, Germany
Department of Psychosomatic Medicine and Psychotherapy, Universal Medical Center Mainz, Untere Zahlbacherstrasse 8, 55131 Mainz, Germany
J Cancer Surviv
Implications for Cancer Survivors Provision of information about psychosocial support seems important to increase utilization of support offers among distressed cancer survivors. Keywords Cancer . Information . Needs . Quality of life . Anxiety . Depression Previous research has consistently pointed out high information needs in cancer patients. Specifically, patients most often request information regarding the stage of their disease, available treatment options, and their chances for a cure [1–10]. Providing information is important since it may reduce uncertainty, foster a sense of personal control, and help making informed decisions regarding treatment options [11, 12]. At the same time, however, many patients perceive considerable deficits regarding the amount and content of information they received and thus often report unmet information needs [6, 13–20]. For example, 70 % of breast cancer patients have been estimated to report unmet needs in the informational domain [14]. Moreover, unmet information needs were observed to be high across patients with different tumor sites [15]. While several factors, including younger age, female gender, lower education, being married/living with a partner, and shorter time since diagnosis, have been identified to be linked to higher needs for information [1, 2, 7, 8, 10, 14, 21–23], less is known about factors associated with low satisfaction with information and high levels of unmet needs. Although one study found a higher information level among younger patients [18], other studies reported that younger patients expressed more unmet needs [8, 17, 19, 20]. Male patients reported to be more satisfied with the information received than did women [8, 12], whereas results regarding level of education were inconsistent [12, 20]. Patients not living with a partner expressed more unmet needs [20], while patients with a shorter time since diagnosis evaluated their information level higher [18]. Altogether, conclusive evidence of the factors associated with unmet information needs is lacking. High satisfaction with the information received as well as low unmet needs have been found to be related to better quality of life and lower emotional distress, in terms of anxiety and depression, in both cross-sectional and prospective studies [2, 3, 10, 17, 24–28]. However, although gender has been linked to need for information, information satisfaction, and amount of unmet needs [7–10, 12], few studies have used a gendersensitive perspective in analyzing associations between these variables. McInnes et al. [10] found certain correlates of need for information, such as age at diagnosis and time since diagnosis, to be present only in women, but not in men. However, no study to date evaluated gender as a possible moderator of the relationships of both information satisfaction and unmet needs with quality of life and emotional distress.
In summary, cancer patients’ information needs are high but fulfilled to varying degrees. The aims of our study therefore were (1) to determine cancer patients’ perceptions of their level of information received, satisfaction with the information received and degree of unmet needs, (2) identify demographic and medical variables associated with these perceptions, and (3) to examine whether information satisfaction and unmet needs were related to anxiety, depression, and quality of life, accounting for gender. Particularly, we tested whether gender moderated the relationship between information satisfaction and unmet needs, on the one hand, and quality of life and emotional distress, on the other.
Methods The methods of the study are described in detail elsewhere [29]. In this multicenter, epidemiological cross-sectional study, cancer patients were enrolled from acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five study centers in Germany (Freiburg, Hamburg, Heidelberg, Leipzig, and Würzburg). Study participants Patient inclusion criteria comprised the evidence of a malignant tumor and age between 18 and 75 years. Patients across all tumor entities and disease stages were included stratified by nationwide incidence of cancer diagnoses. Patient exclusion criteria comprised the presence of severe physical, cognitive, and/or verbal impairments that would interfere with a patient’s ability to give informed consent. All patients who fulfilled the inclusion criteria were contacted by trained research assistants and consecutively recruited at the participating institutions. All participants were screened for depressive symptoms with the Patient Health Questionnaire depression module (PHQ-9) [30] and then asked to provide additional self-report data that form the basis of this study. A subsample in addition completed a structured clinical interview, the results of which are presented elsewhere [31]. The study complied with the Declaration of Helsinki and was approved by the Ethics Committees of all participating centers [29]. Written informed consent was obtained from all individual participants included in the study. Measures To assess patients’ perception of their level of information and unmet information needs, we developed six items covering information regarding (1) cancer diagnosis/disease, (2) the chance of cure/recovery, (3) the likely course of the disease, (4) possible treatment options, (5) risks/side effects of treatments, and (6) psychological support offers. For each item,
J Cancer Surviv
patients were asked to evaluate as to which degree they felt informed about the respective topic, using a 5-point Likert scale ranging from “not at all informed” to “very much informed”. The internal consistency of the six items was high (Cronbach’s alpha=0.84). In addition, for each item, patients were asked to indicate whether they wished additional information about the respective topic, using a dichotomous Byes^ or Bno^ response format. Missing answers were counted as Bno^. Thus, the sum of Byes^ answers may range from zero to six. This sum score was used to represent the degree of unmet information needs. Satisfaction with information was assessed using a single item asking, BHow satisfied are you overall with your level of information?^ The response format was a 7-point Likert scale ranging from Bvery unsatisfied^ to Bvery satisfied^. In addition, we asked patients how satisfied they were with the amount of information received and how helpful they judged the information received, in both cases using a 4-point Likert-type response format (Bnot at all^, Ba little^, Bmoderately^, Bvery much^). We measured depressive symptoms using the German version of the Patient Health Questionnaire depression module, PHQ-9 [30]. It evaluates the presence of the nine symptoms of a depressive episode according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Revision (DSMIV). The PHQ-9 compared favorably to other screening instruments when evaluated with diagnostic criteria provided by the DSM-IV or the International Classification of Diseases, 10th Revision, as reference standards [32, 33]. Higher values indicate more severe symptoms. We measured symptoms of anxiety using the German version of the Generalized Anxiety Disorder Scale, GAD-7 [34]. This 7-item self-report questionnaire evaluates the presence of symptoms of a generalized anxiety disorder according to the DSM-IV. Its reliability and validity for measuring symptoms of anxiety has been proven [35]. Higher values indicate more severe symptoms. Patients’ health-related quality of life was assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) [36]. This instrument is widely used and has a good reliability and validity. It comprises the subscales Physical functioning, Role functioning, Social functioning, Emotional functioning, Cognitive Functioning, and Global quality of life. Higher values indicate better HRQoL. Additional subscales and items measuring symptoms were not used in this study.
correlation coefficient. Gender differences were examined using the chi2 test for categorical or the independent t test for continuous dependent variables. We performed several linear multiple regression analyses using satisfaction with information or number of unmet needs, respectively, as the independent variable and quality of life, symptoms of anxiety and depression, respectively, as the dependent variable. We adjusted for age, gender, living with a partner, high (vs. low) education, and inpatient (both inpatient acute care and inpatient rehabilitation vs. outpatient) setting. In addition, we included the interaction term of gender–satisfaction with information or gender–number of unmet needs, using centered scores, in the respective regression models to examine whether gender moderated the relationship of the independent variable with the dependent variable.
Results Sample characteristics Figure 1 shows the study enrolment. Five thousand eight hundred eighty-nine cancer patients fulfilling the inclusion criteria were identified at 30 hospitals, cancer care clinics, and rehabilitation centers in Germany during the survey period. Across these institutions, 84 different oncology departments and hospital wards were included. The response rate was 69.5 %, which led to 4091 participants who were screened for depressive symptoms using the PHQ-9. Of these, 4020 provided additional self-report data. We analyzed differences in age, sex, education, and setting between study participants (4020) and non-participants (1798). Study participants were younger (M=58.1, SD=11.3 vs. M=62.0, SD=10.1; p
Satisfaction with information and unmet information needs in men and women with cancer Hermann Faller 1 & Uwe Koch 2 & Elmar Brähler 3,4 & Martin Härter 2 & Monika Keller 5 & Holger Schulz 2 & Karl Wegscheider 6 & Joachim Weis 7 & Anna Boehncke 7 & Bianca Hund 8,9 & Katrin Reuter 9 & Matthias Richard 1 & Susanne Sehner 6 & Carina Szalai 3,10 & Hans-Ulrich Wittchen 11 & Anja Mehnert 2,3
Received: 29 January 2015 / Accepted: 8 April 2015 # Springer Science+Business Media New York 2015
Abstract Purpose Information needs in cancer patients are high but often not fulfilled. This study aimed to examine the level of perceived information, information satisfaction, and unmet needs in a large sample of cancer patients. Further, we explored associations with emotional distress and quality of life accounting for gender. Methods In a multicenter, cross-sectional study in Germany, 4020 cancer patients (mean age 58 years, 51 % women) were evaluated. We obtained self-reports of information level, information satisfaction, and unmet needs, measured depressive symptoms with the Patient Health Questionnaire (PHQ-9), symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7), and health-related quality of life with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30).
Results Seventy-two to 88 % of participants reported to be well informed regarding various aspects of their disease, except of psychological support (38 %). However, unmet information needs were also prevalent in 36 to 48 %. Gender differences found were generally small. Although men felt less informed about psychological support, they expressed fewer needs for further information regarding this topic. Irrespective of gender, patients who were less satisfied with information received and had more unmet needs reported more anxiety, depression, and lower quality of life. Up to three quarters of those classified as most severely distressed reported unmet needs for information about psychological support. Conclusions In this largest study to date, we found high levels of both information received and satisfaction with information, but also considerable amounts of unmet needs, particularly regarding psychological support.
* Hermann Faller [email protected]
5
Division of Psychooncology, Department for Psychosomatic and General Clinical Medicine, University Hospital Heidelberg, Im Neuenheimer Feld 155, 69120 Heidelberg, Germany
6
Department of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
7
Department of Psychooncology, Tumor Biology Center, University of Freiburg, Breisacher Strasse 117, 79106 Freiburg, Germany
Department and Outpatient Clinic of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany
8
Rhein-Jura Klinik, Bad Säckingen, Germany
9
Department of Psychiatry and Psychotherapy, University Medical Center Freiburg, Hauptstrasse 5, 79104 Freiburg, Germany
Department of Medical Psychology and Medical Sociology, Section of Psychosocial Oncology, University Medical Center Leipzig, Philipp-Rosenthal-Strasse 55, 04103 Leipzig, Germany
10
Psychosocial Counselling Center for Cancer Patients, Schlobigplatz 23, 08056 Zwickau, Germany
11
Institute of Clinical Psychology and Psychotherapy and Center of Clinical Epidemiology and Longitudinal Studies (CELOS), Technical University Dresden, Chemnitzer Strasse 46, 01187 Dresden, Germany
1
2
3
4
Department of Medical Psychology and Psychotherapy, Medical Sociology and Rehabilitation Sciences, and Comprehensive Cancer Center Mainfranken, University of Würzburg, Klinikstrasse 3, 97070 Würzburg, Germany
Department of Psychosomatic Medicine and Psychotherapy, Universal Medical Center Mainz, Untere Zahlbacherstrasse 8, 55131 Mainz, Germany
J Cancer Surviv
Implications for Cancer Survivors Provision of information about psychosocial support seems important to increase utilization of support offers among distressed cancer survivors. Keywords Cancer . Information . Needs . Quality of life . Anxiety . Depression Previous research has consistently pointed out high information needs in cancer patients. Specifically, patients most often request information regarding the stage of their disease, available treatment options, and their chances for a cure [1–10]. Providing information is important since it may reduce uncertainty, foster a sense of personal control, and help making informed decisions regarding treatment options [11, 12]. At the same time, however, many patients perceive considerable deficits regarding the amount and content of information they received and thus often report unmet information needs [6, 13–20]. For example, 70 % of breast cancer patients have been estimated to report unmet needs in the informational domain [14]. Moreover, unmet information needs were observed to be high across patients with different tumor sites [15]. While several factors, including younger age, female gender, lower education, being married/living with a partner, and shorter time since diagnosis, have been identified to be linked to higher needs for information [1, 2, 7, 8, 10, 14, 21–23], less is known about factors associated with low satisfaction with information and high levels of unmet needs. Although one study found a higher information level among younger patients [18], other studies reported that younger patients expressed more unmet needs [8, 17, 19, 20]. Male patients reported to be more satisfied with the information received than did women [8, 12], whereas results regarding level of education were inconsistent [12, 20]. Patients not living with a partner expressed more unmet needs [20], while patients with a shorter time since diagnosis evaluated their information level higher [18]. Altogether, conclusive evidence of the factors associated with unmet information needs is lacking. High satisfaction with the information received as well as low unmet needs have been found to be related to better quality of life and lower emotional distress, in terms of anxiety and depression, in both cross-sectional and prospective studies [2, 3, 10, 17, 24–28]. However, although gender has been linked to need for information, information satisfaction, and amount of unmet needs [7–10, 12], few studies have used a gendersensitive perspective in analyzing associations between these variables. McInnes et al. [10] found certain correlates of need for information, such as age at diagnosis and time since diagnosis, to be present only in women, but not in men. However, no study to date evaluated gender as a possible moderator of the relationships of both information satisfaction and unmet needs with quality of life and emotional distress.
In summary, cancer patients’ information needs are high but fulfilled to varying degrees. The aims of our study therefore were (1) to determine cancer patients’ perceptions of their level of information received, satisfaction with the information received and degree of unmet needs, (2) identify demographic and medical variables associated with these perceptions, and (3) to examine whether information satisfaction and unmet needs were related to anxiety, depression, and quality of life, accounting for gender. Particularly, we tested whether gender moderated the relationship between information satisfaction and unmet needs, on the one hand, and quality of life and emotional distress, on the other.
Methods The methods of the study are described in detail elsewhere [29]. In this multicenter, epidemiological cross-sectional study, cancer patients were enrolled from acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five study centers in Germany (Freiburg, Hamburg, Heidelberg, Leipzig, and Würzburg). Study participants Patient inclusion criteria comprised the evidence of a malignant tumor and age between 18 and 75 years. Patients across all tumor entities and disease stages were included stratified by nationwide incidence of cancer diagnoses. Patient exclusion criteria comprised the presence of severe physical, cognitive, and/or verbal impairments that would interfere with a patient’s ability to give informed consent. All patients who fulfilled the inclusion criteria were contacted by trained research assistants and consecutively recruited at the participating institutions. All participants were screened for depressive symptoms with the Patient Health Questionnaire depression module (PHQ-9) [30] and then asked to provide additional self-report data that form the basis of this study. A subsample in addition completed a structured clinical interview, the results of which are presented elsewhere [31]. The study complied with the Declaration of Helsinki and was approved by the Ethics Committees of all participating centers [29]. Written informed consent was obtained from all individual participants included in the study. Measures To assess patients’ perception of their level of information and unmet information needs, we developed six items covering information regarding (1) cancer diagnosis/disease, (2) the chance of cure/recovery, (3) the likely course of the disease, (4) possible treatment options, (5) risks/side effects of treatments, and (6) psychological support offers. For each item,
J Cancer Surviv
patients were asked to evaluate as to which degree they felt informed about the respective topic, using a 5-point Likert scale ranging from “not at all informed” to “very much informed”. The internal consistency of the six items was high (Cronbach’s alpha=0.84). In addition, for each item, patients were asked to indicate whether they wished additional information about the respective topic, using a dichotomous Byes^ or Bno^ response format. Missing answers were counted as Bno^. Thus, the sum of Byes^ answers may range from zero to six. This sum score was used to represent the degree of unmet information needs. Satisfaction with information was assessed using a single item asking, BHow satisfied are you overall with your level of information?^ The response format was a 7-point Likert scale ranging from Bvery unsatisfied^ to Bvery satisfied^. In addition, we asked patients how satisfied they were with the amount of information received and how helpful they judged the information received, in both cases using a 4-point Likert-type response format (Bnot at all^, Ba little^, Bmoderately^, Bvery much^). We measured depressive symptoms using the German version of the Patient Health Questionnaire depression module, PHQ-9 [30]. It evaluates the presence of the nine symptoms of a depressive episode according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Revision (DSMIV). The PHQ-9 compared favorably to other screening instruments when evaluated with diagnostic criteria provided by the DSM-IV or the International Classification of Diseases, 10th Revision, as reference standards [32, 33]. Higher values indicate more severe symptoms. We measured symptoms of anxiety using the German version of the Generalized Anxiety Disorder Scale, GAD-7 [34]. This 7-item self-report questionnaire evaluates the presence of symptoms of a generalized anxiety disorder according to the DSM-IV. Its reliability and validity for measuring symptoms of anxiety has been proven [35]. Higher values indicate more severe symptoms. Patients’ health-related quality of life was assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) [36]. This instrument is widely used and has a good reliability and validity. It comprises the subscales Physical functioning, Role functioning, Social functioning, Emotional functioning, Cognitive Functioning, and Global quality of life. Higher values indicate better HRQoL. Additional subscales and items measuring symptoms were not used in this study.
correlation coefficient. Gender differences were examined using the chi2 test for categorical or the independent t test for continuous dependent variables. We performed several linear multiple regression analyses using satisfaction with information or number of unmet needs, respectively, as the independent variable and quality of life, symptoms of anxiety and depression, respectively, as the dependent variable. We adjusted for age, gender, living with a partner, high (vs. low) education, and inpatient (both inpatient acute care and inpatient rehabilitation vs. outpatient) setting. In addition, we included the interaction term of gender–satisfaction with information or gender–number of unmet needs, using centered scores, in the respective regression models to examine whether gender moderated the relationship of the independent variable with the dependent variable.
Results Sample characteristics Figure 1 shows the study enrolment. Five thousand eight hundred eighty-nine cancer patients fulfilling the inclusion criteria were identified at 30 hospitals, cancer care clinics, and rehabilitation centers in Germany during the survey period. Across these institutions, 84 different oncology departments and hospital wards were included. The response rate was 69.5 %, which led to 4091 participants who were screened for depressive symptoms using the PHQ-9. Of these, 4020 provided additional self-report data. We analyzed differences in age, sex, education, and setting between study participants (4020) and non-participants (1798). Study participants were younger (M=58.1, SD=11.3 vs. M=62.0, SD=10.1; p
