The Lee Chronic Graft-Versus-Host Disease (cGVHD) Symptom Scale has been recommended for use by the 2005 and 2014 NIH Consensus Conferences to capture chronic GVHD symptoms. Although the cGVHD Symptom Scale was previously validated, this study aims to re-examine the instrument’s content validity by exploring the clarity, comprehensibility, relevance and ease of use in a contemporary chronic GVHD sample, toward FDA qualification of this patient-reported outcomes (PRO) instrument as a drug development tool. Attaining FDA qualification means that an instrument has been judged to be a reliable and valid measure of clinical benefit. Twenty adult patients with a median age of 58 (range 31–79) years participated. Median duration of chronic GVHD was 33 (range 0–134.4) months, and current NIH severity was mild (n=1), moderate (n=10) or severe (n=9) with a median of 5.5 (range 0–14) treatments ever used for chronic GVHD. The median summary score was 23 (range 8–51), and the median time to complete the scale was 2 minutes 7 seconds (range 01:08–04:00 minutes). Chronic GVHD symptoms were well captured on the Symptom Scale, although four additional symptoms/signs were mentioned by 15% of participants. Participants reported that item wording was clear, and they provided accurate definitions of specific terminologies. However, 7 (35%) participants indicated that they found one or more items in the skin domain unclear, reporting, for example, that rashes and itchy skin seemed synonymous. Two (10.5%) of 19 participants described how their answers would have changed if asked about their symptoms within the past month instead of within the past week owing to recently resolved symptoms. All participants were able to accurately explain the concept of “bother” in their own words and distinguish it from symptom severity or other related symptom attributes. In summary, participants found the tool to be a comprehensive and understandable way to report their chronic GVHD symptom experiences. Future work will focus on options for the recall period, the phrasing of skin items, and whether some very rare symptoms (e.g., feeding tube, use of oxygen) should continue to be a part of the scale.

PurposeAvoiding chemotherapy during the last 30 days of life has become a goal of cancer care in the United States and Europe, yet end-of-life chemotherapy administration remains a common practice worldwide. The purpose of this study was to determine the frequency of and factors predicting end-of-life chemotherapy administration in Uganda.MethodsRetrospective chart review and surveys and interviews of providers were performed at the Uganda Cancer Institute (UCI), the only comprehensive cancer center in the area, which serves a catchment area of greater than 100 million people. All adult patients at the UCI with reported cancer deaths between January 1, 2014, and August 31, 2015 were included. All UCI physicians were offered a survey, and a subset of physicians were also individually interviewed.ResultsThree hundred ninety-two patients (65.9%) received chemotherapy. Age less than 55 years (odds ratio [OR], 2.30; P = .004), a cancer diagnosis greater than 60 days before death (OR, 9.13; P < .001), and a presenting Eastern Cooperative Oncology Group performance status of 0 to 2 (OR, 2.47; P = .001) were associated with the administration of chemotherapy. More than 45% of patients received chemotherapy in the last 30 days of life. No clinical factors were predictive of chemotherapy use in the last 30 days of life, although doctors reported using performance status, cancer stage, and tumor chemotherapy sensitivity to determine when to administer chemotherapy. Patient expectations and a lack of outcomes data were important nonclinical factors influencing chemotherapy administration.ConclusionChemotherapy is administered to a high proportion of patients with terminal cancer in Uganda, raising concern about efficacy. Late presentation of cancer in Uganda complicates end-of-life chemotherapy recommendations, necessitating guidelines specific to sub-Saharan Africa.

Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.

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