Martin, Nichole

Hiccups occur in 15-40% of cancer patients, but previous research has not sought the perspectives of cancer healthcare providers. The objective of this research is to report on United States cancer healthcare providers’ awareness of their patients’ hiccups and these healthcare providers' perceived need for further palliation options. A survey was developed and then distributed throughout the United States via email to cancer healthcare providers; results are reported descriptively. Six hundred eighty-four cancer healthcare providers completed 2 eligibility screening questions which required them to have cared for an adequate number of patients (> 10 in the past 6 months) with “clinically significant” hiccups (defined as hiccups that persisted for >48 hours or occurred from cancer or from cancer care). Of 113 eligible healthcare providers, 90 completed the survey. Healthcare providers described hiccups as associated with stress/anxiety, fatigue, sleep problems, and decreased work/school productivity. In 49% of patients, healthcare providers initially prescribed medications (commonly chlorpromazine or baclofen); 18% expressed dissatisfaction with current palliation. Proffered comments included, “When current therapies do not work, it can be very demoralizing to our patients; ” and “…my biggest complaint is that current treatments also come with their own side effects which can be quite severe.” Discordance appears to exist between the percentage of cancer patients with hiccups and the percentage of cancer healthcare providers with awareness of their patients’ hiccups. Nonetheless, healthcare providers described notable hiccup-associated symptoms in their patients and a need for more palliative options.

Objective This qualitative study sought to learn from patients with cancer -- in their own words -- about anxiety associated with medical testing. Methods Patients with cancer or a history of cancer were recruited from an oncology clinic. After oral consent, each was interviewed in person. A semi-structured interview guide was used to help focus the interviews. Interviews were then recorded, transcribed, and analyzed with rigorous qualitative methods. Results Twenty patients are the focus of this report, which highlights 2 main themes from the data. The first is that anxiety related to medical testing is a real entity. Although not all patients experienced it, those who did described it as such (“I was a little apprehensive.” “It’s the anticipation.” “I don’t think it bothers me until I get near the time for testing.”). The second theme focused on coping. Patients offered insight on how to cope (“So I just deal with it and work.” “And don’t let myself sink into a pity pot ….” “See your scan as a tool instead of … instead of um … a death sentence, I suppose.”) Conclusion In patients with cancer, the anxiety from medical testing is real, could perhaps be mitigated by sharing coping methods from patient to patient, and merits further study.

Background: Epidermal growth factor receptor (EGFR) inhibitors cause cutaneous toxicity in over 90% of patients. Conceivably, healthcare providers could overlook such toxicity in African American/Black patients because of a darker complexion. This qualitative study sought to learn about such cutaneous signs and symptoms and, if present, to report them in patients’ own words. Methods: Any patient who self-identified as African American/Black and who had been prescribed an EGFR inhibitor was eligible. The current report focuses on patients’ responses to the following question, “What have you noticed since starting your cancer treatment (the EGFR inhibitor), any particular symptoms or reactions, positive or negative?” All interview data were audio-recorded, transcribed, and then independently coded and analyzed by two investigators. Results: Fifteen patients are the focus of this report, and all described cutaneous toxicity. Patients appeared troubled by the cosmetic aspect of these drug-induced skin changes, including their acneiform appearance, describing “little pimples with little, little pus in it.” Notable were comments on hyperpigmentation, “I’m a black person but…. became darker.” Furthermore, patients experienced physical symptoms: “it itches;” “it’s like you stuck a pin in it;” “stinging;” and “burning;”. Conclusion: Although cutaneous toxicity from EGFR inhibitors might be more difficult to visualize among darkly complected patients, the graphic descriptions offered in this qualitative study underscore the need for clinicians to heighten their awareness of such toxicity in African American/Black patients.

PURPOSE:This randomized, double-blind study sought to understand whether cancer clinical trial consent form verbosity detracts from patients' decision making on trial enrollment.METHODS:This trial tested mock consent forms of 2,000, 4,000, and 6,000 words. The first two comprised the two experimental arms and the third the control arm. Phase II was conducted to identify the promising arm, which, in phase III, was compared with the control arm. Each consent form described the same trial. Eligible adult patients reported a cancer history and English literacy. The primary end point used a patient-reported Likert scale to assess the relationship between information in the consent form and trial decision making.RESULTS:In phase II, 93 patients were accrued and prompted the selection of the 2,000-word consent form for phase III. In phase III, 182 patients were recruited, resulting in 240 total evaluable patients to compare the 2,000-word versus the 6,000-word arm (control). For the primary end point, 103 (84%) and 107 (91%) patients in the 2,000- and 6,000-word arms, respectively, strongly agreed or agreed with the following: “The information in this consent form helped me make a decision about whether or not to enroll in the trial” (two-sided, P = .14). Median time to read each consent form was 8 and 12 minutes, respectively (two-sided, P < .0001). Among those assigned these consent forms, 84% and 73%, respectively (two-sided, P = .04) signed or expressed a willingness to sign.CONCLUSION:This study's primary end point was not met. However, secondary outcomes suggest a need to further study the efficiency and efficacy of shorter consent forms for cancer clinical trial enrollment.

PURPOSE New technology might pose problems for older patients with cancer. This study sought to understand how a trial in older patients with cancer (Alliance A171603) was successful in capturing electronic patient-reported data. METHODS Study personnel were invited via e-mail to participate in semistructured phone interviews, which were audio-recorded and qualitatively analyzed. RESULTS Twenty-four study personnel from the 10 sites were interviewed; three themes emerged. The first was that successful patient-reported electronic data capture shifted work toward patients and toward study personnel at the beginning of the study. One interviewee explained, “I mean it kind of lost all advantages…by being extremely laborious.” Study personnel described how they ensured electronic devices were charged, wireless internet access was up and running, and login codes were available. The second theme was related to the first and dealt with data filtering. Study personnel described high involvement in data gathering; for example, one interviewee described, “I answered on the iPad, whatever they said. They didn't even want to use it at all.” A third theme dealt with advantages of electronic data entry, such as prompt data availability at study completion. Surprisingly, some remarks described how electronic devices brought people together, “Some of the patients, you know, it just gave them a chance to kinda talk about, you know, what was going on.” CONCLUSION High rates of capture of patient-reported electronic data were viewed favorably but occurred in exchange for increased effort from patients and study personnel and in exchange for data that were not always patient-reported in the strictest sense.