Objective: To describe the development and preliminary validation of an educational handbook for Parkinson’s disease (PD) patients.

Background: PD is a progressive, chronic and heterogeneous condition that demands a variety of healthcare interventions. Educating PD patients about the disease and its treatment improves their quality of life and treatment adherence. Educational materials are a useful tool for health professionals responsible for orienting patients and families.

Method: We developed an educational handbook at a movement disorders clinic in a tertiary hospital in Northeast Brazil. To determine its content, a literature review was conducted. Patients’ questions were compiled and discussed in the group weekly meetings during 2019. The handbook “Living with Parkinson” has 90 pages divided into 12 chapters. It tells the story of a patient who received the diagnosis of PD and learns about its clinical features, treatment, and complications. In each chapter, the reader learns strategies for living well with the disease. Design and diagramming of the images were performed by professionals and students of ​​social communication and marketing. The preliminary validation process was conducted in 2020. The experts answered the Brazilian version of the Suitability Assessment of Materials (SAM), which rates the material as “superior”, “adequate” or “not suitable” on factors that affect readability and comprehension¹.

Results: The validation was applied to 22 healthcare professionals from neurology, geriatrics, psychology, nutrition, clinical pharmacology, and physiotherapy. 20 experts were Ph.Ds. and 19 were professors in Brazilian universities. The team of experts scored 84,1% of the items of SAM as “superior” across all domains: content, literacy demand, graphics, layout and type, learning stimulation & motivation, and cultural appropriateness. The rate goes up to 96,2% if we also consider the “adequate” responses. The results marked as “adequate” or “not suitable” were followed by small adjustments suggestions. Those were made before starting the next step of the validation process.

Conclusion: The content and appearance of the educational material for PD patients were successfully validated by experts. We are currently performing the validation of the educational handbook with patients with a diagnosis of PD.

References: 1. Souza CS, Turrini RNT, Poveda VB. Tradução E Adaptação Do Instrumento “Suitability Assessment of Materials” (Sam) Para O Português. Journal of Nursing UFPE on line [Internet]. 2015;9(5):7854–61. Available from: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/view/10534/11436

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