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Over the last decade, a growing body of studies regarding the application of eHealth and various digital interventions has been published and are widely used in the psycho-oncological care. However, the effectiveness of eHealth applications in psycho-oncological care is still questioned due to missing considerations regarding evidence-based studies on the demands and needs in cancer-affected patients.
This cross-sectional study aimed to explore the cancer-affected women’s needs and wishes for psycho-oncological content topics in eHealth applications and whether women with cancer differ in their content topics and eHealth preferences regarding their experienced psychological burden.
Patients were recruited via an electronic online survey through social media, special patient Internet platforms, and patient networks (both inpatients and outpatients, University Hospital Tuebingen, Germany). Participant demographics, preferences for eHealth and psycho-oncological content topics, and their experienced psychological burden of distress, quality of life, and need for psychosocial support were evaluated.
Of the 1172 patients who responded, 716 were included in the study. The highest preference for psycho-oncological content topics reached anxiety, ability to cope, quality of life, depressive feelings, and adjustment toward a new life situation. eHealth applications such as Web-based applications, websites, blogs, info email, and consultation hotline were considered to be suitable to convey these content topics. Psychological burden did not influence the preference rates according to psycho-oncological content and eHealth applications.
Psycho-oncological eHealth applications may be very beneficial for women with cancer, especially when they address psycho-oncological content topics like anxiety, ability to cope, depressive feelings, self-esteem, or adjustment to a new life situation. The findings of this study indicate that psycho-oncological eHealth applications are a promising medium to improve the psychosocial care and enhance individual disease management and engagement among women with cancer.
Breast and gynecological cancer and the treatment of these diseases are psychologically challenging for affected women. A variety of physical and psychosocial impairments and lifestyle changes can occur and result in a lower health-related quality of life (QoL) and higher unmet supportive care needs [
Due to the high cancer-related psychological burden, current international and national cancer guidelines recommend early assessment of and support for psychosocial problems, distress, unmet supportive care needs, problems with daily activities, and lifestyle risks [
A variety of psycho-oncology interventions have been developed to support cancer-affected patients during and after treatment to reduce unmet supportive care needs [
The aims of this cross-sectional study were to describe the cancer-affected women’s needs and demands for psycho-oncological content topics for eHealth applications and determine if women with cancer differ in their demands regarding their experienced psychological burden (distress, QoL, and need for psychosocial support).
A total of 1172 women with either breast or gynecologic cancer (or both) were assessed in a cross-sectional approach. Patients were recruited to answer an electronic online survey (Questback) through social media, special patient Internet platforms, self-help group leaders, patient networks (eg, Breast Cancer Aid Germany or BRCA Network), and cancer counseling centers. Duplicate entries were avoided by preventing users with the same IP address further access after completion of the survey. Furthermore, consecutive inpatients and outpatients were asked whether they would like to participate in the study (paper-and-pencil questionnaire in the department of gynecology at the University Hospital Tuebingen, Germany). The self-reported paper-and-pencil or self-reported online questionnaires took participants an average of 20 minutes to complete. Eligibility criteria were defined as an adult (age 18 years and older) with breast cancer, gynecologic cancer, or both with sufficient language skills to complete a set of questionnaires. Participation was voluntary and anonymous; no personal identifying information was collected from the patients. The beginning of the questionnaire included the consenting page. Of the 1172 participants assessed, 41 did not meet the eligibility criteria because of another cancer diagnosis. Incomplete datasets (less than 80% response rate) were excluded, resulting in a final dataset of 716 participants, with 581 surveys completed online and 135 surveys completed as paper-and-pencil questionnaires. The local ethics committee of the University Hospital Tuebingen approved the study protocol.
Demographic variables included age, gender, marital status, and number and age of children. Self-reported data on the type of cancer, time since primary diagnosis, and status of disease (primary disease, metastasis, and recurrence) were also collected.
The patient preference survey was self-generated. In total, 25 items considered the patient preference items for an ePOA. Two categories were created with 19 content topics for a psycho-oncological intervention and 6 possible eHealth applications (Web-based application/info home page, chats and blogs, info email, consultation hotline, phone, video conference). Patients ranked their answer on a 3-point Likert scale ranging from 1=not important to 3=very important to the question, “Which content topic is important for a psycho-oncological intervention?” Next, patients ranked their answer on a 3-point Likert scale ranging from 1=not suitable to 3=very suitable to the question, ”Which application is suitable for the mentioned content topics?”
The 11-level visual analog scale of the Distress Thermometer is widely used to measure distress and has been validated in diverse oncology applications [
The Hornheider Screening Instrument (HSI) is a widely used German 7-item screening instrument to identify patients in need of psychosocial support [
The EuroQoL 5-Dimension 3-Level Questionnaire (EQ-5D-3L) has been used in many clinical trials and methodological studies published in the peer-reviewed literature. It is a standardized instrument for describing and evaluating a patient’s general health status and can be used for clinical assessment of QoL [
Descriptive statistics, mean and standard deviation, frequencies, percentages, and chi-square statistics for categorical variables were performed using SPSS 21 for Windows (IBM Corp). Statistical analysis was performed to search for a relationship between patient preferences for psycho-oncological eHealth care and psychological burden with distress, QoL, and need for psychosocial support. Data were normally distributed. Chi-square statistics were used to examine the data for associations between the psychological burden and the preference for psycho-oncological content topics and ePOAs. We computed for distress (highly distressed, distressed, not distressed) and QoL (low, middle, high) in a 3×2 distribution table and for HSI (needing psychosocial support vs not needing psychosocial support) in a 2×2 distribution table. For this purpose, the responses of items were dichotomized (preferences: important vs nonimportant; eHealth applications: suitable vs nonsuitable). Missing data only occurred for the patient preference surveys. The overall mean of missing values was estimated as 2.075%. Missing values were considered only if at least 80% of each of the questionnaires had been completed. Using the Little missing completely at random test, it was confirmed that the data were missing randomly. The expectation-maximization algorithm was used to input the missing data [
Of the 1172 patients who responded, 716 (61.09%) datasets met the inclusion criteria, showed acceptable quality, and were included in the study. The mean age of participants was 50.2 (SD 10.3) years (range 25-83 years). Nearly 80.4% (576/716) of the patients were primarily diagnosed with cancer, and 12.2% (87/716) of participants were diagnosed with metastasis; 11.0% (79/716) were experiencing a recurrence of the past cancer diagnosis. The frequencies of other disease-related and demographic variables and mean values and standard deviations of the Distress Thermometer, EQ-5D-3L, and HSI questionnaires are presented in
The 19 content topics for a psycho-oncological intervention were rated by the patients (see
Study population characteristics: sociodemographic and disease-related information and psychological burden.
Characteristics | Total | |
Age, years, mean (SD); range | 50.2 (10.3); 25 to 83 | |
Length of time between first diagnosis and questionnaire completion, years, mean (SD); range | 4.6 (5.0); 0 to 39 | |
Breasta | 652 (91.06) | |
Gynecologica | 86 (12.01) | |
First episodea | 576 (80.44) | |
Metastasisa | 87 (12.15) | |
Recurrencea | 79 (11.03) | |
Yes | 600 (83.8) | |
No | 116 (16.2) | |
0 | 159 (22.8) | |
1 | 166 (23.2) | |
2 | 241 (33.8) | |
3 | 97 (13.6) | |
4 | 18 (2.5) | |
≥5 | 8 (1.3) | |
Data missing | 24 (3.4) | |
Distress Thermometer | 5.60 (2.57); 0 to 10 | |
EQ-5D-3L | 62.77 (19.88); 0 to 100 | |
Hornheider Screening Instrument | 0.66 (1.51); >0.30 |
aSelf-reported; multiple answers possible.
Lower preference rates were reached by spirituality (308/692, 44.5%), sense-making (632/692, 66.0%), and sexuality (495/692, 71.5%).
Almost all of the eHealth applications for conveying the content topics were considered by more than 50% as suitable. Web-based application/info home page (540/695, 77.7%) was considered to be the most suitable compared to other eHealth applications. Blogs or chats were considered suitable or very suitable (470/694, 67.7%). More than half considered the eHealth applications info email (387/694, 55.8%) and consultation hotline (361/694, 52.0%) suitable or very suitable. Videoconference was judged by the least number of patients (285/687, 41.5%) as suitable for psycho-oncological care (see
Preferences for all content topics were equally distributed in the subgroups distress and QoL. Preferences were not dependent on high, middle, or low distress or high, middle, or low QoL. Also, in the context of needing psychosocial support, patients preferred the same content topics for a psycho-oncological intervention. We found no differences between participants with different levels of distress or QoL concerning the preferred content of eHealth interventions. Furthermore, time since diagnosis or prognosis as well as recruitment (eg, hospital vs Facebook) had no influence on needs (data not shown).
Relevant psycho-oncological content topics for eHealth applications.
Patient preferences regarding eHealth application to convey psycho-oncological content topics.
Our survey explored for the first time the perceived demands and needs for a psycho-oncological eHealth intervention among women with breast and gynecological cancer. Furthermore, we investigated whether there is a relationship between psychological burden (distress, QoL, and need for psychosocial support) and content topic relevance. In this sample of 716 cancer-affected women, we found distinctively relevant content topics for eHealth interventions. The content topics of ability to cope, anxiety, depressive feelings, or adjustment to new life situations have a high impact on eHealth interventions and, in turn, reflect the needs and demands for psycho-oncological care of cancer-affected women. Spirituality, sense-making, and dealing with children had no high relevance for eHealth interventions in our sample. Furthermore, Web-based application/info home page, info email, and chats and blogs were identified as very suitable and suitable for conveying psycho-oncological content topics to the patients. We found that preferences for specific content topics and eHealth applications were equal between patients with high and low burden (experienced distress and QoL). In addition, the need for psychosocial support did not influence the demands and needs of the patients. To summarize, interestingly, women with cancer experience—independently of their psychological burden—have the same demands and needs for psycho-oncological content topics. Furthermore, they expressed the same demands for eHealth applications in psycho-oncological care.
We found in our survey that the most preferred type of psycho-oncological eHealth interventions are Web-based applications or info emails. These results are in line with previous studies that also identified high preferences for eHealth applications [
The psycho-oncological content topics that were evaluated for eHealth applications (see
Our survey study was based on a large sample (N=716) of patients diagnosed with breast cancer, gynecologic cancer, or both. Our use of various and novel recruitment strategies (Internet links, Facebook, blogs, flyers) led to a large proportion being included through the online questionnaire (n=581). This shows that eHealth is especially targeting patients with eHealth literacy, and therefore our results can be considered as representative of these patients [
Our findings show high preference rates for eHealth applications independently of experienced psychological burden among women with cancer. Furthermore, ePOAs may have a high benefit for women with cancer, especially when they address psycho-oncological content topics like anxiety, ability to cope, depressive feelings, self-esteem, or adjustment to new life situations. ePOAs have the potential to help patients overcome disease-related burden and reduce barriers in psychosocial care. However, they can encourage patients who they believe are not sufficiently burdened to participate in common psycho-oncological interventions [
psycho-oncological eHealth application
quality of life
Hornheider Screening Instrument
We thank Christina Wochnowski and Natalie Speiser for their support in the data acquisition. Further, we acknowledge support by Deutsche Forschungsgemeinschaft and the Open Access Publishing Fund of the University of Tübingen.
None declared.