PROMISE: Working with the CF community to understand emerging clinical and research needs for those treated with highly effective CFTR modulator therapy

Highly effective CFTR modulator drug therapy is increasingly available to those with cystic fibrosis. Multiple observational research studies are now being conducted to better understand the impacts of this important therapeutic milestone on long-term outcomes, patient care needs, and future research priorities. PROMISE is a large, multi-disciplinary academic study focused on the broad impacts of starting elexacaftor/tezacaftor/ivacaftor in the US population age 6 years and older. The many areas of investigation and rationale for each are discussed by organ systems, along with recognition of remaining important questions that will not be addressed by this study alone. Knowledge gained through this and multiple complementary studies around the world will help to understand important health outcomes, clinical care priorities, and research needs for a large majority of people treated with these or similarly effective medications targeting the primary cellular impairment in cystic fibrosis.     

Outcomes of status 1 liver transplantation for Budd-Chiari Syndrome with fulminant hepatic failure

There is a paucity of data on the outcome of liver transplantation (LT) in Budd-Chiari Syndrome (BCS) patients who are listed as status 1. The objective of our study was to determine patient or graft survival following LT in status 1 BCS patients. We utilized United Network for Organ Sharing (UNOS) database to identify all adult patients (> 18 years of age) listed as status 1 with a primary diagnosis of BCS in the United States from 1998 to 2018, and analyzed their outcomes and compared it to non-status 1 BCS patients. Four hundred and forty-six patients with BCS underwent LT between 1998 and 2018, and of these 55 (12.3%) were listed as status 1. There was no difference in long-term post-liver transplant or “intention-to-treat” survival from the time of listing to death or the last day of follow-up between status 1 and non-status 1 groups. Graft and patient survival at 5 years for status 1 patients were 75% and 82%, respectively. Cox regression analysis showed that patients listed as status 1 (aHR: 0.45, p < .02) were associated with a better survival. BCS patients listed as status 1 have excellent survival following emergency LT.     

The Empirical Status of the Preparation Hypothesis: Explicating Women’s Genital Responses to Sexual Stimuli in the Laboratory

Research conducted in our laboratory and in other laboratories has revealed that (1) women’s genital responses to visual and auditory stimuli are strongly affected by the presence of sexual cues, but that (2) specific sexual cues (e.g., gender of actors, the presence of sexual violence) often have little impact on the magnitude of the responses—that is, similar genital responses are observed to very different sexual stimuli. In addition, (3) women’s genital responses do not strongly correspond with self-reported sexual partner and activity preferences, or (4) with self-reported sexual arousal during the presentation of sexual stimuli. Taken together, these facts represent a puzzle, especially considering that men’s genital responses are highly affected by specific sexual cues and strongly correspond to stated preferences and self-reported sexual arousal. One hypothesis to explain female low cue-specificity and low concordance (relative to men) is the preparation hypothesis: Women’s indiscriminate genital responses serve a protective function. That is, they do not indicate or necessarily promote sexual interest and motivation, but rather prepare the vaginal lumen for possible sexual activity and therefore prevent injuries that may occur as a result of penetration. We review evidence for and against this hypothesis. We conclude that the evidence is favorable but not entirely convincing, and more work is required to reach a firm conclusion. We offer directions for future research.

     

Attitudes Toward and Willingness to Engage in Consensual Non-Monogamy (CNM) Among African Americans Who Have Never Engaged in CNM

Archives of Sexual Behavior - Research on consensual non-monogamy (CNM) has largely focused on CNM behavior, while less attention has been given to attitudes toward and willingness to engage in...     

Bilateral immediate two-stage breast reconstruction in patients with unilateral breast cancer: Outcomes analysis and risk assessment

IntroductionContralateral prophylactic mastectomy has the potential to decrease the occurrence of cancer and reduce psychological burden. However, it is known that complications after bilateral mastectomy are higher compared with unilateral mastectomy. Our goal was to evaluate outcomes of immediate breast reconstruction in patients undergoing bilateral mastectomy and to compare complication rates between therapeutic and prophylactic sides.Patients and MethodsElectronic medical records of patients with unilateral breast cancer who underwent bilateral mastectomy and immediate reconstruction with expanders were reviewed. Postoperative complications were compared between therapeutic and prophylactic mastectomy sides.ResultsSixty-two patients were analyzed. The overall complication rate after both stages was 23.9% on the therapeutic side and 16.5% on the prophylactic side. Infection was the most common complication on both sides. All infections on the prophylactic mastectomy side were successfully treated with intravenous (IV) antibiotics (salvage rate of 100%), whereas 35.7% of infected tissue expander/implants on the therapeutic mastectomy side were explanted despite treatment.ConclusionCareful counselling of patients undergoing elective contralateral prophylactic mastectomy is essential as complications can develop in either breast after reconstruction.     

Creating patient-centered radiology reports to empower patients undergoing prostate magnetic resonance imaging

IntroductionAs we progress to an era when patient autonomy and shared decision-making are highly valued, there is a need to also have effective patient-centered communication tools. Radiology reports are designed for clinicians and can be very technical and difficult for patients to understand. It is important for patients to understand their magnetic resonance imaging (MRI) report in order to make an informed treatment decision with their physician. Therefore, we aimed to create a patient-centered prostate MRI report to give our patients a better understanding of their clinical condition.MethodsA prototype patient-centered radiology report (PACERR) was created by identifying items to include based on opinions sought from a group of patients undergoing prostate MRI and medical experts. Data was collected in semi-structured interviews using a salient belief question. A prototype PACERR was created in collaboration with human factors engineering and design, medical imaging, biomedical informatics, and cancer patient education groups.ResultsFifteen patients and eight experts from urology, radiation oncology, radiology, and nursing participated in this study. Patients were particularly interested to have a report with laymen terms, concise language, contextualization of values, definitions of medical terms, and next course of action. Everyone believed the report should include the risk of MRI findings actually being cancer in the subsequent biopsy.ConclusionsA prostate MRI PACERR has been developed to communicate the most important findings relevant to decision-making in prostate cancer using patient-oriented design principles. The ability of this tool to improve patient knowledge and communication will be explored.     

Sex Differences in Response to Deception Across Mate-Value Traits of Attractiveness,Job Status,and Altruism in Online Dating

Sex differences in mate preferences are well established. It is also well understood that humans often seek to manipulate their standing on important mate-value traits. Yet, there is a paucity of work examining potential sex differences in response to deception along these important dimensions. In Study 1, a sample of 280 undergraduates (123 females) responded to a hypothetical online dating scenario asking participants to rank how upset they would be if deceived about a date’s attractiveness, occupation, or volunteerism. Women ranked occupation deception as more upsetting than men did, and men ranked attractiveness deception as more upsetting than women did. Given potential measurement differences between forced-choice and continuous response options, Study 2 randomly assigned 364 undergraduates (188 females) to one of the deceptions conditions and asked them to report their level of upset and willingness to go on the date using a continuous response scale. Women were more likely than men to cancel the date if the deception involved volunteerism or occupation. There was no significant sex difference in the attractiveness condition. Neither mate value nor sociosexuality moderated the sex difference in the levels of upset due to the deception. Together, these findings demonstrate that women and men exhibit differences in the degree to which they become upset by opposite sex deceptions in online dating, regardless of self-perceived mate value and sociosexuality, in alignment with evolved sex differences in mate preferences.