Evaluating the impact of the Patient Preference Assessment Tool on clinicians' recommendations for phase I oncology clinical trials.

OBJECTIVE: Many groups recommend assessment of patient preferences particularly for patients with advanced, incurable cancer. We, therefore, developed the Patient Preference Assessment Tool (PPAT) to ascertain patient preferences in order to inform clinician recommendations and improve shared decision-making. The aim of this study is to assess the PPAT's impact on clinicians' strength of recommendations for phase I oncology clinical trials. METHODS: Clinicians recorded the strength of their recommendation on a Likert scale before viewing the patient's PPAT. After viewing the PPAT, the clinician discussed the clinical trial with the patient and then recorded the strength of recommendation again. If there was a change, the clinician noted the reason for the change: clinical findings or patient preference. Clinicians were interviewed about the acceptability of the tool. Our threshold for determining if a change in recommendation due to the PPAT was significant was 20%, given the multiple factors influencing a clinician's recommendation. We also noted the type of phase I conversation observed based on classifications defined in prior work-priming, treatment-options, trial logistics, consent. RESULTS: N = 29. The strength of the clinicians' recommendations changed due to patient preferences in 7 of 29 (24%) of the conversations. The seven changes due to preferences were all in the 23 treatment-options conversations, for an impact rate of 30% in this type of conversation. 82% of clinicians found the PPAT useful. CONCLUSION: The PPAT was impactful in an academic setting, exceeding our 20% impact threshold. This tool helps achieve the important goal of incorporating patient preferences into shared decision-making about clinical trials.

Patient perspectives on compensation for biospecimen donation.

BACKGROUND: The purpose of this study was to determine whether biospecimen donors believe they should receive compensation. This is the first study to report biospecimen donors' views on compensation and can potentially improve informed consent and recruitment practices. METHODS: Researchers asked patients undergoing surgical removal of tissue to donate biological materials to a biobank; the request was made at their presurgical appointment or in the preoperative clinic of the Emory University Hospital. We interviewed 126 biospecimen donors within 30 days post surgery regarding their perspective on compensation for biospecimen donation. RESULTS: In response to the question "Should you be paid for your participation in the tissue bank?," 95 (95/126, 75%) participants answered "No." Of these, 55 (55/95, 58%) indicated that donating biological materials should be about altruism, not gaining a monetary reward. Only 11 (11/126, 9%) participants unequivocally believed they should receive compensation, while 14 (14/126, 11%) felt entitled to compensation only under specific circumstances. Eleven (11/14) "Depends" participants indicated that donors should only be compensated when researchers perform for-profit research. Responses varied by race and income level, with whites more likely to not feel entitled to compensation and higher income participants more likely to respond "Depends." CONCLUSIONS: The majority of biospecimen donors stated they should not be paid for tissue bank participation. However, a minority believe they should be paid for donating tissue if the tissue is used in revenue-generating projects. These results provide some support for the current biobanking practice of not providing compensation.

Referral Patterns and Clinical Outcomes for Transplant-Eligible Lymphoma and Myeloma Patients Evaluated at an Urban County Hospital.

Disparities in clinical care have been described for patients with limited insurance coverage or social support. We hypothesized that patients with relapsed Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), or multiple myeloma (MM) treated at an urban county hospital serving indigent and under-insured patients would face barriers for referral to a private academic transplant center for autologous stem cell transplantation (ASCT). Charts of patients with HL, NHL, or MM treated at Grady Memorial Hospital between 2007 and 2013 were reviewed, and 215 patients with diagnosis of HD (n=40), NHL (n=96), and MM (n=79). 55 patients were referred for ASCT consults and 160 patients were not referred. Reasons for transplant non-referral included established clinical criteria (64% of cases), poor performance status (13%), refusal (4%), moved/lost-to-follow-up (4%), medical non-compliance (3%), death (3%), or referral to another hospital (1%). Non-referral based upon socio-economic criteria included: lack of legal immigration status/insurance (2%), and lack of social support/substance abuse (2%). Among the 55 referred patients, 27 patients (49%) underwent ASCT. Median follow-up for all referred patients from the time of diagnosis was 3.9 [0.7-22.7] years. 5-year survival from the date of diagnosis for patients who received ASCT was 80.2% versus 65.7% for non-transplanted patients (log-rank test, p-value=0.11). While the referral process did not demonstrate significant barriers based upon insurance or social status, further evaluation is needed to identify modifiable factors that can improve referral and assess the impact of the Affordable Care Act on access to ASCT.