Table 18.

Patient-Centered Visit Preparations

Environment
Temperature	Cold can be injurious in SSc Control clinic temperature exposure via either: - thermostat adjusted to >72F/22C - or with blankets for dedicated patient use Patients should be advised to bring clothing layers to maintain warmth for areas outside of clinic control
Fragrance-free	A perfume-free policy maintains a safe environment for patients, family members and clinic staff: - fragrance can trigger dyspneic coughing episodes in patients with ILD - fragrance can impede PFT performance for that patient and other nearby patients or those who subsequently in the suite Advisement occurs prior to visit, during scheduling.
Supplemental Oxygen Availability	Many patients with SSc use supplemental oxygen tanks that hold a limited oxygen supply. Upon patient arrival, switching their tank to a clinic tank: - assures sufficient supply for their visit - preserves supply for the patient’s journey home If this can’t be done, patients should be advised of anticipated length of time at the facility for which they will need to have sufficient supply.
Wait Times	Multiple procedures on a single day can be exhaustive and unanticipated. Helping patients and families anticipate their needs with the following advisements creates a more comfortable (and safe) experience:
Nutrition Needs	- Bringing snacks and lunch
Hydration	- Having water or preferred beverages available
Down time	- Reading materials etc. to pass time waiting between tests and visits
Visit Times	Assessment, intervention and counselling in SSc that is sufficient to reduce SSc-related symptoms and complications requires time.
New Patients	≥90 minutes but can require 3 hours, depending on disease extent, complications and initiating management
Established Patients	45 to 90 minutes as even stable patients with SSc requires multi-organ assessment and SSc-specific counselling that is beyond a usual visit for most other conditions
Chart Review	SSc management is often time-sensitive and relies upon diagnostic testing and symptom history trended overtime. New patients often require extensive data organization; while Interval history is often dense for established patients. Appropriate chart review requires pre-visit attainment of past and interval medical records. Documentation of serial data points prior to visit facilitates proactive management, freeing up clinician attention for meaningful patient-centered discussions. Real-time interventions and counselling may result in: - fairly immediate relief of some disabling symptoms - prevention of disease progression Chart review is reimbursable in the US, whether on same day or other day. See resources list for medical record intake template and other clinic support documents.
Consolidating Testing	Consolidating SSc diagnostic testing in as few visits as possible reduces travel burden, employment impact on patient and family
Out-patient	Past records, pre-visit labs, PFTs, HRCT or echo, ordered prior to scheduled visit, with results forwarded for clinician review, expedites management during the visit. Same day SSc-diagnostic testing, prior to clinician visit: - Common approach at SSc centers: coordinating SSc testing to occur same day, prior to scheduled visit
In-patient	An alternate approach for new and established patients at SSc centers in some countries with: - Approximate 2 day hospital admission - All routine SSc diagnostic testing and any further testing as indicated by - Evaluation and teaching by PT/OT - Management with counselling over one or both days Patients also visit as out-patients for interim monitoring, repeat testing