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

Author:

Schneider NicoORCID,Bäcker Anna,Strauss BernhardORCID,Hübner JuttaORCID,Rubai Sabine,Wagner SteffenORCID,Schwarz-Fedrow Doris,Hager Lutz,Brenk-Franz Katja,Keinki ChristianORCID,Brandt FlorianORCID,Altmann UweORCID

Abstract

Abstract 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

Funder

Innovation Fund of the Federal Joint Committee

Friedrich-Schiller-Universität Jena

Publisher

Springer Science and Business Media LLC

Subject

Oncology

Reference52 articles.

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