Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany.

Theresia Krieger,Natalia Cecon,Kathrin Schwickerath,Sandra Salm,Holger Pfaff,Andrea Göttel,Anna Arning,Antje Dresen,Stefanie Houwaart

doi:10.3390/ijerph19031518

Abstract

High-quality patient information material (PIM) is essential for patients´ informed decision-making, and its quality may influence a care program’s acceptance. In the new psycho-oncological care program, isPO, the initial PIM was developed top-down and required optimization. In this paper, we report on the process and experiences of optimizing PIM’s quality bottom-up by applying a Participatory Health Research (PHR) approach. Cancer-patient representatives of the national peer-support group contributed as co-researchers as part of the optimization team. A mixed-methods design was chosen. First, the quality of the initially utilized PIM was assessed with the newly designed user-friendly instrument UPIM-Check. Next, three Participatory Action Research loops were conducted, including cancers survivors and isPO service providers. The initial isPO PIM’s were assed to be of low quality, limited usability and incomplete. Bottom-up generated optimization suggestions led to the improvement of two initially used PIMs (leaflet, patient information folder) and the design of two new PIMs (poster, study information overview). The optimized PIM facilitates isPO service providers’ care provision and helps newly diagnosed cancer patients in understanding and accepting the new program. PIM optimization benefited from applying PHR. The patient representatives’ contribution and active patient engagement were central for quality assessment and designing needs-driven, mature and complete PIM.

Highlights

The specific aim of this paper is to describe the bottom-up quality assessment and optimization process of the initial Integrated Cross-Sectoral Psycho-Oncological (isPO) patient information material (PIM) by applying the Participatory Health Research (PHR) approach with constant engagement of the patient representative
It became apparent that not all materials were utilized in each network by the isPO service providers for patient program information and orientation
This article reports on the experiences of optimizing the quality of PIM for the new complex German psycho-oncological care program isPO by applying participatory health research (PHR)

Summary

Introduction

Patient information material (PIM) is essential in healthcare [1]. Welldesigned high-quality PIM empowers the end-user (e.g., cancer patients) [1]; increases their satisfaction concerning communication with health professionals, especially in complex situations (e.g., with life threatening events) [2]; and augments the openness and motivation to participate in new interventions or research programs [3,4]. PIM can enhance endusers’ program understanding [5] and, may increase program acceptance [6]. Low-quality PIM may provoke uncertainty, misinterpretation, or patients’ resistance to a program [7,8]. In cancer-care support, PIM’s quality impacts on patients’ anxiety levels, emotional distress, vulnerability, and unfamiliarity with the new situation [9,10]

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