ArticleInternational journal of environmental research and public health2022
Optimizing Patient Information Material for a New Psycho-Oncological Care Program Using a Participatory Health Research Approach in Germany.
Article in International journal of environmental research and public health, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed, 1 synthesis or guideline pooled it, 14 citations in OpenAlex.
- Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes.JNCI cancer spectrum · 2024Pooled it
- Patients' perspectives on the quality of care of a new complex psycho-oncological care programme in Germany - external mixed methods evaluation results.BMC health services research · 2023Article
- Hereditary renal cancer patient and public involvement group: A collaborative, consensus decision process to develop a communication tool for patient use.Journal of clinical and translational science · 2023Article
- Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach.International journal of environmental research and public health · 2022Article
Corrections and comments
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Authors and funding
9 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.