Measuring subjective side effects and symptoms in palliative photodynamic therapy.

PURPOSE/OBJECTIVES To evaluate the reliability and validity of the Photodynamic Therapy Side Effects and Symptoms Scale (PSES) and to begin to describe patient-reported outcomes of photodynamic therapy (PDT). DESIGN Repeated-measures instrument validation. The PSES uses a 10-point numeric scale to evaluate side effects or symptom trouble or burden on 13 items. SETTING A Pacific Northwest community hospital. SAMPLE 14 patients with end-stage lung or esophageal cancer undergoing palliative PDT. METHODS Participants completed five PSES surveys (i.e., at baseline and once a week for four weeks after PDT). Weekly phone calls were made to assess functional status, operationalized as Karnofsky Performance Status. MAIN RESEARCH VARIABLES Symptoms and functional status. FINDINGS The PSES possessed acceptable internal consistency reliability and concurrent validity. Functional status declined in the first week after PDT, concurrent with an increase in side-effect and symptom burden. Photosensitivity became more burdensome over time but was never extremely burdensome. CONCLUSIONS The feasibility of measuring a diverse set of side effects and symptoms in end-stage cancer with a single-page, large-type instrument essentially was supported. The study provided preliminary information about side effects and symptoms in patients undergoing palliative PDT. IMPLICATIONS FOR NURSING Nurses often are called on to provide information to patients considering various treatment options. This study offers the first data on patient-reported outcomes of palliative PDT that clinicians can use to help in answering inquiries. The design of the PSES may be replicated by researchers working with other populations with end-stage disease to reduce respondent burden and decrease attrition.