Background Discussions regarding palliative care and end‐of‐life care issues are frequently delayed past the time of usefulness, resulting in unwanted medical care. We sought to develop a patient‐reported outcome (PRO) instrument that allows patients to voice their symptom burdens and facilitate timing of discussions. Subjects, Materials, and Methods A seven‐item PRO instrument (Cota Patient Assessed Symptom Score‐7 item [CPASS‐7]) covering physical performance status, pain, burden, and depression was administered (September 2015 through October 2016) with correlation to overall survival, correcting for time to complete survey since diagnosis. Results A total of 1,191 patients completed CPASS‐7 at a median of 560 days following the diagnosis of advanced cancer. Of these patients, 49% were concerned that they could not do the things they wanted; 35% reported decreased performance status. Financial toxicity was reported by 39% of patients, with family burdens noted in 25%. Although depression was reported by 15%, 43% reported lack of pleasure. Pain was reported by 33%. The median CPASS‐7 total symptom burden score was 16 (possible 0–112). With a median follow‐up of 15 months from initial survey, 46% had died. Patients with symptom burden scores <29 and ≥29 had a 6‐month overall survival rate of 87% and 67%, respectively, and 12‐month survival rates of 72% and 50%. A one‐point score increase resulted in a 1.8% increase in expected hazard. Conclusion Patients with advanced cancer with higher levels of symptom burden, as self‐reported on the CPASS‐7, had inferior survival. The PRO facilitates identification of patients appropriate for reassessment of treatment goals and potentially palliative and end‐of‐life care in response to symptom burden concerns. Implications for Practice A seven‐item patient‐reported outcome (PRO) instrument was administered to 1,191 patients with advanced cancers. Patients self‐reporting higher levels of physical and psychological symptom burden had inferior overall survival rates. High individual item symptom PRO responses should serve as a useful trigger to initiate supportive interventions, but when scores indicate global problems, discussions regarding end‐of‐life care might be appropriate.
A seven-item patient-centric PRO instrument was able to separate advanced malignancy patients into cohorts who their physicians deemed were at differing stages in their cancer journey with increasing needs for advance care planning. A study to determine if the threshold scores identified in this pilot correlate with palliative/EOL consultation frequency and patient survival is underway.
86 Background: A diagnosis of advanced cancer frequently thrusts family members into the role of caregiver. Although caregiver burdens have been well documented, less is known about the level of concern borne by the patient (pt) with cancer in placing a family member in this role, known as self-perceived burden (SPB). Methods: As part of the larger “Living with Cancer” project we prospectively surveyed 1307 pts with advanced malignancies receiving treatment with non-curative intent at 17 New Jersey cancer programs within the Regional Cancer Care Associates network between Sept 2015 and Apr 2016. Pts were asked one question about SPB on family members (5-level Likert scale). Results: Pts felt that “Living with Cancer burdens my family” all day every day 68 pts (5%), part of each day 109 pts (8%), most days 136 pts (10%), occasionally 571 pts (44%) or not at all 423 pts (32%). Twenty-four percent of responses were flagged as concerned (rated most days or greater by 313 pts). In a logistic regression model, SPB was correlated with marital status (married and divorced more concerned than single) and younger age (both p < 0.05). Patients living in lower median income neighborhoods also appeared to have a higher frequency of concern (p < 0.1) Factors not correlating with the level of SPB included gender, race, solid vs liquid tumor type, and length of cancer diagnosis. SPB was also not influenced by DNR status, having developed a Living Will, or documentation of power of attorney. Distance from the pt’s home to the cancer center was not associated with SPB on the caregiver. For comparison, on the same LWC project 38% of pts with advanced cancer were concerned about the financial toxicity of their care and 33% were concerned about pain (both p < 0.01 compared to SPB). Conclusions: Self-perceived burden on a caregiver was identified in 24% of pts with advanced cancer, less than those concerned about financial toxicity or pain, in this NJ series. Divorced/married pts and younger pts with cancer are more likely to express concern. Developing an EOLC plan (DNR/Living will/POA) does not appear to influence SPB concerns.
150 Background: End-of-Life Care (EOLC) discussions are frequently delayed past the time of usefulness, resulting in cancer patients (pts) receiving aggressive, expensive, non-desired care. The “Living with Cancer” project has developed a 7-item, 5-level Likert scale PRO tool that evaluates, from the pt perspective, their concerns regarding performance status, pain, family/financial burden, and depression during their cancer journey. The instrument was shown to correlate well with the oncologist’s opinion of appropriateness to continue treatment and might be useful as a quality metric in guiding timing of EOLC discussions (J Palliative Med 2016). Methods: The LWC PRO was administered to 1302 pts with advanced malignancies receiving care by Regional Cancer Care Associates (NJ) between Sept 2015 and Aug 2016, with confirmation of life status in Sept 2016. Exploratory factor analysis was conducted on the LWC instrument to identify latent constructs (factors) contributing to the item scores. The data set was deemed suitable for factor analysis based on standard statistical tests, including Bartlett’s test (p < 0.001). Results: A 3-factor model comprised of factors (1) Global functioning (using 5/7 items), (2) Financial toxicity (1/7 items), and (3) Depression (1/7 items) was fitted to the data using maximum likelihood and promax rotation (p = 0.043). Factor scores were compared between the cohort of 133 pts who expired within 3 months of completing their final survey and the 1124 who remained alive after 3 months. The mean global functioning score was significantly greater (worse) in the expired cohort (p < 0.001), suggesting the PRO description of distress correlated with survival. Financial toxicity and depression factor scores did not correlate with survival. Conclusions: The 7-item LWC PRO instrument contains 5 items defined by a global functioning factor that discriminates based on 3-month overall survival. This finding adds further evidence that the 7-item PRO tool can be used to time EOLC discussions with the aim to ensure better correlation between pts’ treatment desires and delivered care. LWC may also serve as a quality metric evaluating timing of EOLC discussions.
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