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

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

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

“…Measurable bene ts were seen in the fact that a majority of users felt better informed and found the information they were looking for. As we showed in further PIKKO analyses [20], patients with already high health literacy at baseline, as measured by the HSL-EU-Q47 [21] bene ted in particular. These patients increased their health literacy by using the WDB (analysis of dose effects).…”

“…Predictors of actual health literacy were initial symptomatology (baseline), measurement time points, and dose (= self-reported data from patients on how often they have used the WDB). Interaction effects were also considered in the model [20].…”

“…The curve growth models (Table 4) revealed an interaction effect between initial health literacy and use of the WDB [20]. Patients with initially higher health literacy bene t signi cantly more from more frequent use of the WDB through improved health literacy scores (Fig.…”

“…The analysis of the in uence of the WDB on health literacy has already been described by the authors elsewhere [20] and will be taken up here due to its relevance in terms of content.…”

“…Health literacy was measured as part of the PIKKO survey [20] at all measurement time points using the HLS-EU-Q47 [21] (follow-up measurements: n = 301, min = 1, max = 4, median = 2). The score ranges from 0 to 50, with higher values indicating a higher level of health literacy.…”