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.

[Brief Scale to assess Social Support in Chronic Diseases (SUCE-4)]. / Kurzfragebogen zur Sozialen Unterstützung bei chronischen Erkrankungen (SUCE-4).

AIM OF THE STUDY: Social support is an important resource for coping with serious chronic diseases such as cancer. The available questionnaires for the measurement of social support are usually extensive. So far, available short versions do not completely aim at situation-specific requirements of the social environment of chronically ill patients. Therefore, a short form of a measure of perceived social support was developed consisting of only 4 items: the SUCE-4. METHODS: A sample of cancer patients (N=424) was examined at 2 time points. The factor structure was evaluated using exploratory and confirmatory factor analysis (CFA) and reliability and validity were examined. RESULTS: The expected factor structure was confirmed (for CFA: RMSEA=0.028). The short questionnaire revealed a good internal consistency (Cronbach's α>0.86). In terms of the first indications of validity, significant and expected correlations with psychological quality of life, self-efficacy expectations, depression and anxiety were found at both time points. CONCLUSION: The SUCE-4 is an economical, reliable and valid instrument for the assessment of perceived social support in the context of severe chronic diseases such as cancer.

Patient information, communication and competence empowerment in oncology (PIKKO) - evaluation of a supportive care intervention for overall oncological patients. Study protocol of a non-randomized controlled trial.

BACKGROUND: Cancer patients have to undergo a difficult medical therapy and are also confronted with various psychological, social and economic problems. Support is available from many providers, but patients often gain no access to it. Accordingly, there is a need for a single point of contact that can provide advice, information and assistance. In the state of Saarland, Germany, a supportive new consulting and information path (PIKKO) for all types of cancer is currently evaluated by the German Cancer Society, the Cancer Society of the Saarland, three statutory health insurances and the Jena University Hospital. PIKKO is designed to improve quality of life, self-efficacy, health literacy and patient satisfaction and to reduce psychological distress, related health care costs and the days of inability to work. This methodical work presents the process and analysis planning of this evaluation. METHODS: The study population includes all cancer types, both new and existing diseases. PIKKO (with patient navigator, oncological knowledge database, specialized oncological counseling) is evaluated within a controlled, non-randomized, comparative, multicenter, longitudinal design. In addition to patient surveys, data from statutory health insurances and utilization data from the web database are collected, and interviews with patient navigators and doctors are carried out. Patients are assigned to a control (usual care) or an intervention group (u. c. + PIKKO). Primary outcome is the health related quality of life (SF-12) six months after baseline. Secondary outcomes are self-efficacy (GSE), psychological distress such as depression (PHQ-9) or anxiety (GAD-7), health literacy (HLS-EU-Q47) and patient satisfaction in health care (Qualiskope-A). Furthermore, the time course of direct costs of medical care (e.g. work disability days) and usage data of the intervention modules are analyzed. Among other statistical procedures, we use t-tests, univariate tests and growth curve models. DISCUSSION: If PIKKO proves to be effective, recommendations can be made to health organizations, which should lead to the concept being rolled out throughout Germany and included into oncological guidelines. We expect PIKKO to be a useful addition to usual cancer care, helping to improve the quality of life of cancer patients and reduce healthcare costs. TRIAL REGISTRATION: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21.02.2019, the reason for the delay was the prioritization of the study management in the first year to establish the new approach into practice). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

Striving for group agency: threat to personal control increases the attractiveness of agentic groups.

When their sense of personal control is threatened people try to restore perceived control through the social self. We propose that it is the perceived agency of ingroups that provides the self with a sense of control. In three experiments, we for the first time tested the hypothesis that threat to personal control increases the attractiveness of being part or joining those groups that are perceived as coherent entities engaging in coordinated group goal pursuit (agentic groups) but not of those groups whose agency is perceived to be low. Consistent with this hypothesis we found in Study 1 (N = 93) that threat to personal control increased ingroup identification only with task groups, but not with less agentic types of ingroups that were made salient simultaneously. Furthermore, personal control threat increased a sense of collective control and support within the task group, mediated through task-group identification (indirect effects). Turning to groups people are not (yet) part of, Study 2 (N = 47) showed that personal control threat increased relative attractiveness ratings of small groups as possible future ingroups only when the relative agency of small groups was perceived to be high. Perceived group homogeneity or social power did not moderate the effect. Study 3 (N = 78) replicated the moderating role of perceived group agency for attractiveness ratings of entitative groups, whereas perceived group status did not moderate the effect. These findings extend previous research on group-based control, showing that perceived agency accounts for group-based responses to threatened control.