Participatory Development and Preliminary Psychometric Properties of the User-Friendly Patient Information Material Checklist (UPIM-Check)

Abstract

The aims of this study were (1) to design a user-friendly instrument to assess and optimize patient information material (PIM), (2) to develop an English version, and (3) to test its psychometric properties. The instrument was needed to optimize the top-down developed PIM of the psycho-oncological care programme isPO. First, a literature-based PIM checklist was developed by a team of patient representatives, cancer care experts and professional researchers. Next, the checklist’s reliability and validity were analysed by having cancer survivors assess the initial and optimized version of the isPO-leaflet. The User-friendly Patient Information Material Checklist (UPIM-Check), developed participatorily, was found to be effective for evaluating PIM. It uses a traffic light scale, and suggestions for improvement can be given for each criterion. Its reliability appeared to be excellent (α = 0.927). The optimized leaflet was rated significantly better than the initial one. The UPIM-Check is a reliable and valid instrument, which enables end-users (e.g., patients) to assess and optimize the quality of PIM according to scientific criteria and the needs of end-users. A bottom-up approach was essential for developing and validating the UPIM-Check. End-users constantly contributed with their specific knowledge. Thus, their position as co-researchers was significantly strengthened.

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

“…Next, users may insert individual optimization impulses for each item in a free text field (see Figure 2). Details on the UPIM-Check's development and validity are published elsewhere [38].…”

“…End-users, isPO service providers, and the PIM optimization team experienced it as user-friendly during assessment and resource saving by generating recommendations for optimizations from the same perspective. Currently, this instrument is validated and accessible free of charge to the German-speaking society only [38,62]. However, an English version is currently being piloted with self-help organizations in the UK, USA, Canada, and Australia.…”

Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach

“…HON (Health On the Net foundation) is acknowledged as a quality seal, defining the code of conduct for PIM producers [ 11 ]. Recently, a new PIM quality assessment instrument, the UPIM-Check (User-Friendly Patient Information Material Checklist), was developed by applying the participatory health research (PHR) approach and demonstrated its effectiveness [ 12 ]. The UPIM-Check helps to assess a PIM´s quality in four areas by using a traffic light system [ 12 ].…”

“…Recently, a new PIM quality assessment instrument, the UPIM-Check (User-Friendly Patient Information Material Checklist), was developed by applying the participatory health research (PHR) approach and demonstrated its effectiveness [ 12 ]. The UPIM-Check helps to assess a PIM´s quality in four areas by using a traffic light system [ 12 ]. In addition, improvement suggestions can be noted in an adjacent text field.…”

“…Hence, the optimisation of the isPO PIM was needed, and as such was conducted between October 2019–February 2020. It resulted in four high-quality PIM, namely, a poster, leaflet, patient folder, and one-pager, that were introduced in practice in 03/2020 [ 12 , 24 ]. The PHR approach [ 25 ] was applied for the PIM optimisation process, whereby three groups contributed as co-researchers: end-users (former cancer patients), health professionals, and service providers.…”