A Digital Tool for Tracking Neuropsychiatric Symptoms in Patients with Systemic Autoimmune Diseases

Hypothesis

A structured, daily digital symptom-tracking tool will improve the detection, characterisation, and longitudinal understanding of neuropsychiatric symptoms in patients with Systemic autoimmune diseases (SADs).

Abstract

SADs such as systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), are chronic conditions that significantly impair patients’ quality of life. Neuropsychiatric symptoms- including fatigue, sleep disturbances, mood disorders, anxiety, headaches, and cognitive difficulties- are common, fluctuate over time, and are often underreported in routine clinical care. This project focuses on designing and prototyping a digital self-monitoring tool that enables patients to systematically log daily mental health parameters and neuropsychiatric symptoms using validated questionnaires and symptom-specific forms. The goal is to improve understanding of daily factors influencing quality of life and to better assess the prevalence and patterns of neuropsychiatric symptoms in patients with SADs.
The app will enable users to complete short daily or periodic assessments covering key symptom domains that strongly impact quality of life, such as: sleep quality and disturbances, depression, mood variability, anxiety, fatigue, headaches, and daily activity levels. Application will primarily be designed in polish, however, if successful, it will be translated to english and shared with english-speaking SADs patients, with high care regarding data safety. Given that the majority of patients with these conditions are women, the application will also include a menstrual cycle tracking module, allowing exploration of potential associations between hormonal changes and neuropsychiatric symptom exacerbation.
The project will emphasize usability, accessibility, and minimal daily burden for patients. Where possible, established and validated scales (e.g. PROMs, FACIT-Fatigue, HADS, PSS-10) will be adapted into a digital format. Data visualization features (symptom timelines, correlations, summaries) will be explored to make the information meaningful both for patients and clinicians.
Participants will collaboratively design the app structure, questionnaires, data model, and basic frontend/backend prototype. Ethical considerations, data privacy, and future clinical validation pathways will also be discussed.
If successful, application’s prototype will be validated with a SADs patients cohort to receive potential users’ feedback, suggestions and information on its helpfulness.