“We need to ask more What matters to you ?
in addition to What’s the matter with you ?”
– Institute for Healthcare Improvement
“What matters most?” It is a question that may not get the attention it deserves in our everyday lives. A serious diagnosis like cancer unveils the value of the question, and the value of the answer. What matters becomes even more important when time and energy is running out. Moreover what matters, patient goals, help determine the right treatment options and the right care. Yet in the busy world of clinical care what really matters to patients and their families is often not understood or addressed.
Yes scans reveal tumor size and location, and pathology tumor characteristics. However, an adequate understanding of “what matters” and “what’s going on” relies on doctor patient communication. Yet doctors lack time and knowledge about a patient’s daily life and goals. And patients lack health literacy and are reluctant to bother their doctors.
To help overcome these difficulties we have created Goings-On, a personalized monitor app for patients and their family members. In less than a minute a day they can keep track of how they are doing; both in what matters (personal goals) and what is the matter (symptoms). This helps to determine the right treatment options for patients and prevent burnout in family members (informal caregivers).
Goings-On is not a decision aid. Decision aids help patients choose either treatment A or B. Goings-On reveals goal attainment and symptom management to help doctors determine the right treatment options, which might also be treatment C, or supportive care. Research shows one in two persons struggle with treatment preferences, yet all patients can elicit on average three to four things that really matter to them.
tested with low health literates, evidence: design that works for low health literates also works better for health literates
to guide decision-making, evidence: currently rarely asked
to turn on step counter and access digital temperature, weight and sleep measurements (Nokia Health via Apple Health Kit)
to help a. symptom management, evidence: recall when to call a doctor 20%, and b. early detection disease progression, evidence (standardized symptom reporting): +2 months chemotherapy (patients receiving treatment), +5 months survival, more quality of life, less ER visits, less hospitalizations, benefits greater if less computer experience
to help patients address questions and concerns, evidence: consultation duration minus 3 minutes if used by doctor and patient, less anxiety, more prognostic information shared, more information recall
Recent research reveals the potential benefits of monitoring in cancer. Basch and Denis asked patients to weekly rate twelve mostly physical symptoms in a mobile application. Temel addressed symptoms, coping, treatment goals, treatment decisions and illness understanding in monthly consultations. All resulted in more adequate understanding and changes in treatments. This in turn lead to prolonged survival and better quality of life at likely less costs (less hospitalizations, less CT-scans and less aggressive end of life treatment). Follow up research (Temel) revealed family members (informal caregivers) had less distress.
We are currently testing the Goings-On iOS prototype. Thinking aloud testing with patients from the Netherlands Cancer Institute (Antoni van Leeuwenhoek Hospital) and low literates in cooperation with Pharos (Dutch Centre of Expertise on Health Disparities) has already lead to improvements in usability of the app. The adjusted prototype is now to be tested in a multicenter three-month randomized controlled trial of intervention principles with newly diagnosed brain tumor and lung cancer patients in cooperation with the National eHealth Living Lab (Leiden University Medical Centre).
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Goings-On is made in loving memory of Richard van den Heuvel (1971-2012). He lived to his greatest ability, a full life, despite his brain tumor. We hope Goings-On helps a multitude of patients achieve their version of full lives, and doctors and nurses patient’ gratitude that keeps the fire burning.