Implementation and Evaluation of a Mobile App to Support Communication in Paediatric Palliative Home Care: Results of a Multicentre Observational Pilot Study

Technical Summary: Implementation and Evaluation of the PalliDoc Mobile App in Paediatric Palliative Home Care

Problem Statement
Paediatric Palliative Home Care (PPHC) in Germany, specifically in the state of Hesse, faces significant logistical challenges despite its success in improving quality of life and reducing intensive care admissions. Current care models rely on weekly home visits, telephone contacts, and a 24/7 on-call service. However, two critical gaps exist:

1. Asynchronous Communication: There is no timely, data-protection-compliant method for exchanging updated documents (e.g., medication plans, photos, videos) between families and care teams.
2. Synchronous Remote Assessment: In crisis situations where a team member is not on-site, rapid remote assessment is impossible, often necessitating travel times of up to 90 minutes each way.
   While telehealth offers a potential solution, existing applications often focus on specific disease groups (e.g., oncology) rather than the holistic needs of paediatric palliative care.

Methodology
The study was a single-arm, multicentre observational pilot conducted between July 2023 and September 2024 across three PPHC teams in Hesse (Frankfurt, Giessen, Kassel).

• Intervention: The PalliDoc Mobile App, developed via a co-design approach, was introduced to patients and caregivers. The app linked to the teams' electronic patient records and offered eight features:
  • Asynchronous: Study questionnaires, appointment calendars, medication plans, educational material, data upload (documents/photos/videos), viewing shared electronic files, and entering Electronic Patient-Reported Outcomes (ePRO).
  • Synchronous: Video consultations.
• Participants: Out of 186 patients under care, 63 families (33.8%) were recruited based on a consensus that the intervention would benefit their specific care situation. Inclusion required informed consent; exclusion applied if the team expected neutral or negative effects.
• Evaluation Framework: The study utilized the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance) to assess sustainability and generalizability.
• Data Collection: Quantitative data included routine care logs, sociodemographic questionnaires, the German Telehealth Usability and Perceived Usefulness Short Questionnaire (G-TUUSQ), and selected items from the Telemedicine Quality of Life Measure (Tele-QoL). Data were analyzed using R and Excel 365.

Key Results

• Reach: 100% of invited families (63/63) participated. The cohort was comparable to national German PPHC data, though with fewer infants and more primary school-aged children.
• Adoption: Recruitment rates varied by team (18.8% to 52.4% of eligible patients), influenced by staff availability and team consensus on expected benefits.
• Implementation:
  • Asynchronous Features: Six of seven asynchronous features were used by over two-thirds of families. The medication plan was the most utilized feature (95.2%).
  • Synchronous Features: While 88.9% of families accessed the video consultation button, only 62% (129 consultations) resulted in actual video exchanges.
  • ePRO Usage: Electronic symptom reporting was less frequent than other features, attributed to the tool being in development during the study and families' inability to view their own historical scores.
  • Device Strategy: The study initially provided tablets but switched to a "Bring Your Own Device" (BYOD) model after four months due to low regular usage and battery issues.
• Effectiveness & Usability:
  • Families rated perceived health-related usefulness very highly (Mean: 6.22/7).
  • Usability scores were also high (Mean: 6.01/7).
  • Reported burden was low, and concerns regarding data privacy/misuse were minimal.
• Maintenance: No families withdrew (100% completion). All three teams continued using the app post-study, integrating it into standard care. During the 12-month follow-up, 49 new accounts were issued.
• Safety: No adverse events were reported, with the exception of a single, swiftly corrected data misallocation (a photo assigned to the wrong patient) that did not result in unauthorized access.

Significance and Claims
The authors conclude that the PalliDoc Mobile App is a sustainable and beneficial addition to PPHC. The study demonstrates that:

1. Asynchronous communication is highly effective and frequently integrated into routine care, particularly for medication management and document sharing.
2. Synchronous video consultations, while accessible, did not show measurable impact on delivery frequency in this pilot, suggesting they may serve a different or less frequent role than anticipated.
3. Low Burden: The app is perceived as useful without adding significant burden or privacy concerns to families already under stress.

The paper modestly notes that while the app complements care effectively, this observational study could not assess impacts on patient-relevant outcomes like quality of life, citing potential "ceiling effects" in PPHC populations. The authors emphasize that the varying adoption rates across teams suggest selection bias and that the inclusion criterion (expected benefit) limits generalizability to the entire PPHC population. The study serves as a foundational step for future research into the broader implementation of telehealth in paediatric palliative settings.