Meeting what matters: effects of the Goings-On app on cancer patient personal goal documentation and dialogue

Patient personal goals are individual and change over time. Yet doctors rarely document and ask patients about their goals. When doctors are not aware of goals, care (i.e. diagnostics, treatments, symptom management) cannot be aligned with what matters most to patients, besides just living longer. Primary objective of this project is to assess if the Goings-On app is effective in increasing awareness among caregivers of patients’ personal goals, measured by increased documentation of (changes in) patient personal goals in the medical file. Secondary objectives are to assess whether patient personal goals are more often discussed in outpatient consultations and to what extent patients experience goal concordant decision-making.

The intervention is hypothesized to increase patient goal documentation, patient goal dialogue and patient experienced level of goal-concordant decision-making, compared to the control group.

Quality of Life and Anxiety and Depression assessments are planned at baseline, i.e. prior to getting access to the Goings-On app, and after 3 months, i.e. after the end of the study. The secondary endpoints and consultation time are measured during and after each consultation. All other measures are established after the end of the study, 3 months after baseline.

Medical specialists and nurse specialists who are likely to have consultations with study patients, whether in the intervention or control group, during the three months of research, receive a 1-hour briefing. Patients in the control group receive usual care. Patients in the intervention group get access to the Goings-On app and get told by the research nurse that medical specialists and nurse specialists really want to know what matters most to them, to enable treatments that not only match the disease, but also the person. The Goings-On app enables patients to log their personal goal attainment and symptom burden within a minute on a daily basis.
Both the briefing and giving patients explicitly permission to participate are evidence informed. Goings-On has been tested for usability via think aloud testing with patients of the Netherlands Cancer Institute and people who have trouble reading, the latter in cooperation with the Dutch Centre of Expertise on Health Disparities Pharos.