A web-based knowledge database to provide evidence-based information to cancer patients: Utilization within the PIKKO study.

PURPOSE: Cancer is associated with an urgent need for understandable and reliable information, which is often not satisfied by information available online. Therefore, as part of the PIKKO project, a web-based knowledge database (WDB) was introduced to provide cancer patients with quality-assured, evidence-based information. This paper aims to provide insights into the usage (Who? How? What?) and the effects regarding health literacy of the WDB. METHODS: A patient survey and automatically generated logfile data were evaluated. Two user groups, patients and patient navigators (PNs), were compared. RESULTS: The 13 PNs were responsible for 1/3 of all accesses over the entire duration of the project. The 413 patients used WDB twice on average and spent an average of 12 min per session online (PNs: 9 min per session, more frequently). The top 3 topics of interest were 'therapy', 'nutrition' and 'carcinogenesis' for the patients, and 'therapy', 'naturopathy' and 'legal regulations/support' for the PNs. Of the patients surveyed, 69% said that WDB was helpful in making informed decisions, 76% found the information they wanted and 90% thought WDB was an appropriate way to provide information. CONCLUSION: Our WDB provided important information about cancer and its treatment on a digital way both, to patients and PNs. In routine cancer care, the WDB can improve health literacy and informed decision-making. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

The impact of the COVID-19 pandemic restrictions on the health care utilization of cancer patients.

BACKGROUND: COVID-19 has impacted both society and medical care. While Germany entered the first lockdown in spring 2020, the PIKKO study (Patient information, communication and competence empowerment in oncology) was still active. The intervention modules, patient navigator (PN), services of the Saarland Cancer Society (SCS), psycho-social counseling and different courses, and online knowledge database (ODB) continued to be offered, but in an adapted form. It was the aim of this supplementary survey to identify the restrictions and burdens of the pandemic containment strategies on the PIKKO patients and thus on the PIKKO study itself. Furthermore, this work shows how the PIKKO modules were used during the lockdown. METHODS: All patients in the PIKKO intervention group (IG) were invited to complete a questionnaire, n = 503. Furthermore, utilization of the SCS and log files of the ODB were analyzed. For socio-demographic data and contacts with the PN, data from the regular PIKKO surveys were used. In addition to descriptive statistics, chi²-tests, F-tests and linear regression analyses were performed. RESULTS: 356 patients participated in this supplemental survey. 37.6% reported restrictions. "Restrictions on accompanying persons", "ban on visits to the wards" and "protective mouth-nose-mask" were reported as the greatest burdens. 39.0% expressed fears that the restrictions would have an impact on the course of their disease. Linear regression analyses showed differences in feelings of burden among age groups (more among < 60-year-olds), gender (more among women), children in the household (more with children), and preexisting financial stress (more with financial worries). In April 2020, there was more patient contact with PNs by phone, more SCS psycho-social counseling by phone, adapted SCS course offering, but with significantly fewer participants, and high activity on the ODB. CONCLUSION: Cancer patients in the IG reported restrictions from the pandemic containment strategies and feared an impact on their recovery. However, whether a burden is perceived as heavy depends more on gender, age, or pre-existing burdens than on whether the lockdown affects PIKKO or not. The utilization of counseling, courses or the ODB despite lockdown shows the need for such services, especially in times of crisis. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703 .

Patient information, communication and competence empowerment in oncology: Results and learnings from the PIKKO study.

PURPOSE: Many concepts for accompanying and supporting cancer patients exist and have been studied over time. One of them was PIKKO (a German acronym for "Patient information, communication and competence empowerment in oncology"), which combined a patient navigator, socio-legal and psychological counseling (with psychooncologists), courses dealing with various supportive aspects, and a knowledge database with validated and easy-to-understand disease-related information. The aim was to increase the patients' health-related quality of life (HRQoL), self-efficacy as well as health literacy and to reduce psychological complaints such as depression and anxiety. METHODS: To this purpose, an intervention group was given full access to the modules in addition to treatment as usual, while a control group received only treatment as usual. Over twelve months, each group was surveyed up to five times. Measurements were taken using the SF12, PHQ-9, GAD, GSE, and HLS-EU-Q47. RESULTS: No significant differences were found in scores on the mentioned metrics. However, each module was used many times and rated positively by the patients. Further analyses showed a tendency higher score in health literacy with higher intensity of use of the database and higher score in mental HRQoL with higher intensity of use of counseling. CONCLUSION: The study was affected by several limitations. A lack of randomization, difficulties in recruiting the control group, a heterogeneous sample, and the COVID-19 lockdown influenced the results. Nevertheless, the results show that the PIKKO support was appreciated by the patients and the lack of measurable effects was rather due to the mentioned limitations than to the PIKKO intervention. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21.02.2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

[Psychometric Properties of the Qualiskope-A for Measuring Patient Satisfaction with Outpatient Medical Treatment: Use in Oncology and Transferability to Inpatient Care]. / Psychometrische Eigenschaften des Qualiskope-A zur Messung der Patientenzufriedenheit mit der ambulant-ärztlichen Behandlung: Einsatz in der Onkologie und Übertragbarkeit auf die stationäre Versorgung.

AIM: The Qualiskope-A is a German-language PREM (Patient Reported Experience Measure) which, with the help of 27 items allocated to four scales, enables measurement of patient satisfaction with outpatient medical treatment along four dimensions of patient satisfaction. This study examined whether the questionnaire delivers reliable results in an oncological population and whether its application can be extended to inpatient care. METHOD: Required data was collected as part of the PIKKO study. Initially, descriptive statistics and internal consistency (Cronbach's alpha) of the PREM's scales were analyzed. In addition, a sub-sample that assessed the same doctor at two consecutive measurement time points was observed with regard to test-retest reliability (Spearman correlation (rs) between both measurement time points). The measurement model of the Qualiskope-A was then examined using confirmatory factor analysis. To test the transferability to inpatient care, measurement invariance with regard to outpatients and inpatients was computed. RESULTS: A total of 476 patients was included in the study. Every score of the Qualiskope-A showed a left-skewed distribution in the sample and revealed pronounced ceiling effects. Cronbach's alpha coefficients were consistently>0,8. Within the test-retest group (n=197), a strong correlation (rs>0,5) was observed between the measurement time points. The fit indices calculated using confirmatory factor analysis showed a good model fit (CFI=0,958; RMSEA=0,026; SRMR=0,040; every factor loadings>0,6). The fit indices, calculated as part of the investigation of measurement invariance, consistently met the defined threshold values. CONCLUSION: The Qualiscope-A shows good reliability in the examined oncological sample. It can be used in both outpatient and inpatient settings (no indications of non-invariance were found). Due to pronounced ceiling effects, however, the item scaling should be revised.

[Measurement Invariance and Validity of the Short Form of the Bielefeld Partnership Expectations Questionnaire (BPEQ12)]. / Messinvarianz und Validität der Kurzform des Bielefelder Fragebogens zu Partnerschaftserwartungen (BFPE12).

The short form of the Bielefeld Partnership Expectations Questionnaire (BPEQ12) measures three partner-related attachment scales: fear of rejection, readiness for self-disclosure and conscious need for care. In addition to factor structure and reliability, the present study examined measurement invariance and validity using a non-clinical and a clinical sample of college students (N=208). Besides the BFPE12, the following Questionnaires were assessed: Short Form of Experiences in Close Relationships - Revised (ECR-RD8), Outcome Questionnaire (OQ-30), revised Beck Depression Inventory (BDI-II), Social Phobia Inventory (SPIN), and Test Anxiety Inventory (TAI-G). The factor structure is tested using confirmatory factor analysis (CFA), the internal consistency of the scales is quantified using McDonald's ω, the measurement invariance is investigated with two-group structural equation models, and the validity is examined using correlation and regression analyses. In both samples, the factor structure was confirmed (CFI>0.93; TLI>0.93; RMSEA<0.08; SRMR<0.08) and the reliability of all three scales was acceptable (ω>.7) - with the exception of need for care in the non-clinical group. We found configurational, metric and scalar measurement invariance regarding to the assignment in the clinical and non-clinical sample. In terms of convergent validity, fear of rejection and conscious need for care were associated with attachment-related anxiety (r=0.771 and r=0.539, p<0.001) and low readiness for self-disclosure was correlated with attachment-related avoidance (measured with ECR-RD8, r=- 0.704, p<0.001). Overall, the present study supports the factor structure, measurement invariance, reliability, and validity of the BPEQ12 in clinical and non-clinical samples.

Continual rehabilitation motivation of patients with postparalytic facial nerve syndrome.

PURPOSE: To evaluate the continued rehabilitation motivation in patients with postparalytic facial synkinesis (PFS). METHODS: In this single-center cross-sectional survey, the multidimensional patient questionnaire for assessment of rehabilitation motivation (PAREMO-20) was used to assess the rehabilitation motivation. Associations Sunnybrook and Stennert index grading, Facial Clinimetric Evaluation (FaCE) survey, general quality of life (SF-36), Liebowitz Social Anxiety Scale (LSAS), Patient Health Questionnaire (PHQ)-9, technology commitment and affinity, and interest in further therapy were analyzed. RESULTS: 69 adults with PFS (73% women; median age: 54 years) answered the survey. In comparison to prior treatment forms, there was a significant higher future interest in computer-based home facial training (p < 0.0001). For PAREMO Psychological burden subscore, SF36 Emotional role was the highest negative correlative factor (p < 0.0001). For PAREMO Physical burden subscore, SF-36 General health was the highest negative correlative factor (p = 0.018). Working (p = 0.033) and permanent relationship (p = 0.029) were the only independent factors correlated to PAREMO Social Support Subscore. Higher positive impacts of technology affinity was inversely correlated to PAREMO Knowledge subscore (p = 0.017). Lower SF-36 Role physical subscore p = 0.045) and a lower SF-36 General health (p = 0.013) were correlated to a higher PAREMO Skepticism subscore. CONCLUSIONS: Patients with PFS seem to have a high facial motor and non-motor psychosocial impairment even after several facial therapies. Rehabilitation-related motivation increases with both, higher facial motor and non-motor dysfunction. Social and emotional dysfunction are drivers to be interested in innovative digital therapy forms.

[A Short Version of the Body Experience Questionnaire (FBeK): Results of Clinical and Non-Clinical Samples]. / Eine Kurzversion des Fragebogens zur Beurteilung des eigenen Körpers (FBeK): Ergebnisse aus klinischen und bevölkerungsrepräsentativen Stichproben.

OBJECTIVES: The aim of this study was the development and evaluation of a short (9-item) version of the body experience questionnaire (FBeK-9). METHOD: Based upon a representative survey from 1996, a 15-item version of the FBeK was constructed which was then evaluated in another representative sample (n=2510) as well as three clinical groups, namely patients with depressive disorders (n=106), patients with eating disorders (N=107), and patients suffering from pain (N=90). Depressive and anxiety symptoms and pain disability (PHQ-9, PHQ-4, PDI) were also assessed. Item selection and the determination of the factor structure were performed using exploratory and confirmatory factor analysis and led to the development of the FBeK-9. The final three subscales were tested for invariance related to sex, age and disorder. In addition, convergent validity was assessed and norms were provided. RESULTS: Models of confirmatory factor analyses revealed acceptable fit indices ((CFI) =0.982,(ω ) =0.020) in all samples. The subscales "uncertainty/impaired sensation","attractiveness/self-confidence" and "accentuation of the body/sensitivity" indicated acceptable reliability (ω=0.707) and correlated with depressive and anxiety symptoms and pain in an expected manner. We also could show differences between the normative sample and the clinical groups. Measurement invariance was shown for age and sex. CONCLUSIONS: It can be concluded that the 9-item version of the body experience questionnaire also provides a reliable, valid and economically efficient measure that can be used in studies of body experience in non-clinical and clinical samples. In the future, more validity studies should be performed.

[Convergence of Scales to Measure Social Anxiety: An IRT Linking Approach]. / Konvergenz von Skalen zur Erfassung sozialer Ängste: Ein IRT-Linking Ansatz.

OBJECTIVE: The Liebowitz Social Anxiety Scale (LSAS) and the Social Phobia Inventory (SPIN) are established measures in the investigation of social anxiety. Furthermore, the subscale Interpersonal Sensitivity of the Brief Symptom Inventory (BSI-53) is frequently used to screen social anxiety. All three scales claim to capture the same construct, which raises the question of the convergence of these scales. To make research findings comparable by a cross-questionnaire factor (common factor), an item response theory (IRT) linking approach is used in the present study. METHODS: 64 German-speaking psychiatric patients and 295 healthy subjects completed the three questionnaires. Different IRT models, including Graded Response Models (GRM), were constructed, and their model fit compared. Regression analyses were performed based on the best-fit model. The common factor was predicted from the questionnaire total values. RESULTS: The relationship between the different scales was best explained by a bifactor GRM with one common factor and three domain-specific factors (RMSEA=0.036, CFI=0.977, WRMR=1.061). Based on the results of the regression analyses, three equations were derived for the transformation of questionnaire's total values. CONCLUSION: The IRT linking approach allows the derivation of a general factor of social anxiety, taking into account commonalities and differences between the instruments used. This has advantages for both research and practice. A replication of this study as well as the implementation of further instruments are recommended to verify the validity of this approach and to generalize the results.

Is there an elephant in the room? A study of convergences and divergences of adult attachment measures commonly used in clinical studies.

Objective: In view of the persisting conceptual confusion related to the convergence of attachment measures, we investigated several common measures within a clinical and a non-clinical sample, tested the convergence/divergence of different measures, and tried to find a dimensional model. Method: 175 patients with panic disorder/agoraphobia and 143 matched non-clinical individuals completed seven self-report attachment measures/ clinical self-reports and were interviewed by applying the Adult Attachment Interview (AAI), the Adult Attachment Rating (AAR) and the Adult Attachment Projective (AAP). Results: The categorical and most dimensional attachment measures differentiated between the samples. The convergence of the categorical measures was low, whereas we found moderate to high correlations between similar scales in the dimensional self-report measures. Expectedly, the convergence of dimensional and categorical attachment measures was low. In a factorial (exploratory as well as confirmatory) model, four independent dimensions were extracted reflecting self-rated attachment anxiety and avoidance, the categories of the AAI and those of the AAP, indicating significant differences between the measures. Discussion: Measures of adult attachment are only partially convergent, underlining the need for clarification of which aspect of attachment is actually being assessed in individual clinical investigations. The question remains whether the different measures are in fact related to one construct.

Cross-Correlation- and Entropy-Based Measures of Movement Synchrony: Non-Convergence of Measures Leads to Different Associations with Depressive Symptoms.

BACKGROUND: Several algorithms have been proposed to quantify synchronization. However, little is known about their convergent and predictive validity. METHODS: The sample included 30 persons who completed a manualized interview focusing on psychosomatic symptoms. The intensity of body motions was measured using motion-energy analysis. We computed several measures of movement synchrony based on the time series of the interviewer and participant: mutual information, windowed cross-recurrence analysis, cross-correlation, rMEA, SUSY, SUCO, WCLC-PP and WCLR-PP. Depressive symptoms were assessed with the Patient Health Questionnaire (PHQ9). RESULTS: According to the explorative factor analyses, all the variants of cross-correlation and all the measures of SUSY, SUCO and rMEA-WCC led to similar synchrony measures and could be assigned to the same factor. All the mutual-information measures, rMEA-WCLC, WCLC-PP-F, WCLC-PP-R2, WCLR-PP-F, and WinCRQA-DET loaded on the second factor. Depressive symptoms correlated negatively with WCLC-PP-F and WCLR-PP-F and positively with rMEA-WCC, SUCO-ES-CO, and MI-Z. CONCLUSION: More standardization efforts are needed because different synchrony measures have little convergent validity, which can lead to contradictory conclusions concerning associations between depressive symptoms and movement synchrony using the same dataset.