Purpose/Objectives
Families who experience cancer often experience financial toxicity because of direct medical costs such as medications, missed work and other out-of-pocket costs (e.g., travel to hospital, accommodation, and parking. There are few instruments available to measure out-of-pocket costs for cancer patients and their caregivers. Our purpose was to validate an existing multi-dimensional standardized costing tool (P-SAFE) designed to measure the financial impact along the cancer journey for patients and their caregivers.
Sample and Setting
Clinical oncology and survey design experts and people living with cancer participated. The participants were situated in two large comprehensive cancer centres and affiliated university.
Procedures
The Patient Self-Administered Financial Effects (P-SAFE) questionnaire, developed in the year 2000 to capture financial burden of patients and caregivers, was modified using oncology experts (5) and cancer patients (5) to refine the questionnaire in three areas: 1/ Face validity, 2/content validity, and 3/ ease of use.. Following modification based on the experts’ feedback, patients were recruited from several Canadian oncology centres. Patients provided feedback on the content, understandability, and acceptability of the instrument following completion of the refined tool. Changes based on expert and patient feedback were then incorporated in the updated version. This revised instrument was administered to 41 outpatients patients to evaluate reliability.
Results
Ten participants provided recommendations regarding changes in wording of questions and ease of completing the tool. The revised version (v8.0.0) used in the reliability testing with patients revealed insights regarding formatting and administration as well as additional (optional) demographic questions.
Conclusion and clinical implications
The P-SAFE instrument has completed psychometric evaluation and can be used among persons with cancer. To date, use of the instrument has shown the financial burden carried by patients and supports the need for assessment of this impact in routine practice.