Table 3

The functionalities of the MyPal Carer app offered to the child’s parents

FunctionalityDescription
R1Patient QoL reportingProxy reporting of the QoL for the patient using an electronic implementation of the validated PedsQL questionnaire. Older patients will be asked to complete the questionnaire directly in the MyPal Child app. This is linked with an outcome measure of the study and is reported once per month.
R2Parent QoL reportingReporting of the QoL of the parent using an electronic implementation of the validated EQ-5D-3L questionnaire. This is linked with an outcome measure of the study and is reported once per month.
R3Satisfaction with care reportingReporting of the satisfaction with received care using an electronic implementation of the validated PATSAT-C33 questionnaire. This is linked with an outcome measure of the study and is reported once per month.
R4Disease impact on family scale reportingReporting of the impact of the disease on the family using an electronic implementation of the validated Impact on Family Scale questionnaire. This is linked with an outcome measure of the study and is reported once per month.
R5Patient Symptom ReportingProxy reporting of symptoms for the patient using an electronic adaption of the SSPedi/Mini-SSPedi questionnaire. Usually patients will be asked to answer questions with regard to symptoms directly in the gamified app.
  • QoL, quality of life.