Table 4. Practical approaches for improving communication regarding Off periods.

Population Associated with Suggested Strategies	Approaches
Patients, carepartners	- Keeping track of symptoms between visits to enhance recall - Having carepartners, others at clinical visits - Pre-visit preparation (e.g. creating an agenda, discussing topics to raise, completion of pre-visit questionnaires) - Describing symptoms and challenges with honesty - Targeted use of strategies such as diaries, home videos - Self-education through asking questions of medical team, attending PD classes, published resources (print, online, video) - Asking questions when something is unclear
Clinicians	- Demonstrating empathy, respect, interest, curiosity - Taking time to listen to patients, carepartners at visits - Asking about off periods at every visit - Probing the impact of off periods on daily function - Acknowledging the uniqueness of each individual’s concerns - Involving carepartner at clinical visits - Separating conversation from data entry - Intentionally creating a shared off period vocabulary with patients, carepartners - Providing verbal and print/online education regarding off periods and what to expect - Allowing time for patients and carepartners to both respond to questions and ask questions - Use of teach-back methods to ensure understanding - Targeted use of strategies such as diaries, home videos
Hospitals, Clinics	- Ensuring continuity of care across longitudinal clinical visits - Allotting sufficient time for clinical encounters - Creating clinical spaces enabling communication without interference from technology - Hiring additional staff (e.g. allied health, advance practice providers) to provide additional assessments and education - Providing mechanisms for communication between visits (e.g. patient portals) - Providing educational programs (e.g. classes, symposia) and print educational materials regarding off periods