How Do You Keep a Symptom Diary Your Doctor Can Use?

A symptom diary turns “I’ve been getting headaches” into something a doctor can work with: when each symptom started, how bad it was, how it changed, and what was happening around it. The most useful diaries rate each symptom on a consistent scale at the time, rather than from memory at the appointment, and record changes as they happen.

This article is general information, not medical advice. Get urgent care for severe or sudden symptoms rather than recording them.

Why Your Own Reports Matter

In cancer trials, doctors traditionally recorded patients’ side effects themselves. Basch and colleagues, working for the US National Cancer Institute (NCI), describe how this approach under-detects symptoms, and developed the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) so patients could report them directly. It covers 78 symptoms suitable for patients to report, such as nausea, fatigue, or cough, in 124 items asking about their frequency, severity, or interference with daily life, in plain language tested with patients.

A Consistent Severity Scale

PRO-CTCAE rates each symptom’s severity on five levels:

Level	Severity
0	None
1	Mild
2	Moderate
3	Severe
4	Very severe

A fixed scale makes Monday’s “moderate” mean the same as Friday’s. For pain, the 0 to 10 numeric scale is the standard instead; see How Should You Rate Pain From 0 to 10?

What to Record

• Each change, as it happens. A new entry when a symptom starts, when its severity changes, and when it ends (an entry of “none”), so the diary shows how long each lasted.
• Its time. Many symptoms follow patterns by time of day, meal, or cycle.
• What was going on. Food, drink, sleep, exercise, stress, medicines, and their times.
• What helped or made it worse.
• Effects on your day, such as missed work, in a note.

Bring the diary, or a summary of it, to appointments. A few weeks of entries before a visit give a clinician a pattern rather than an impression.

Following It in Kaizora

On Symptoms, each entry is one exactly defined symptom, such as headache, nausea, or cough, with its Symptom Severity on PRO-CTCAE’s five levels, at the moment you log it. A change in severity is a new entry, and a symptom ending is an entry of none. Apple Health’s export brings in symptoms logged in the Health app, with their severity. Symptoms Logged counts your entries. The Timeline shows each symptom beside the rest of your day, from meals to sleep, and you can break a chart down by symptom.

The Short Version

• Record symptoms as they happen, on a consistent scale.
• PRO-CTCAE’s five levels run from none to very severe.
• Log each change in severity, and what was going on around it.

Sources

• Basch E et al., “Development of the National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE),” Journal of the National Cancer Institute 106, no. 9 (2014): dju244. doi:10.1093/jnci/dju244
• National Cancer Institute, Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).