Endometriosis is a chronic, painful disease without a cure. Due largely to chronic pain, endometriosis can lead to significant physical, mental, relationship, and financial burdens. Within the conventional single provider model of care-in which the patient is primarily taken care of by her physician and complementary strategies based on psychology, nutrition, pain medicine, pelvic physical therapy, and so on may not be readily available in a coordinated manner-most women with endometriosis live with unresolved pain and the consequences of that pain. We therefore propose that there is an urgent need to search for alternative models of care. In the current paper, we discuss our experiences with an model of care in which we adopt a long-term, patient-focused, and multidisciplinary chronic care model for women with endometriosis. Our objective is to improve long-term clinical outcomes for women with endometriosis. For geographical areas and healthcare systems in which it is feasible, we propose consideration of this multidisciplinary model of care as an alternative to the single provider model and offer guidance for those considering establishment of such a program. We also initiate a conversation about which clinical outcomes pertaining to endometriosis are important and should be tracked to assess the efficacy and value of multidisciplinary and other endometriosis healthcare models.

/pdf/rethinking-endometriosis-care-applying-the-chronic-care-3tqg8cct5a.pdf

Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis

Purpose – The purpose of this paper is to explore the dynamics of online health care communities and the impact of two-way online social support on customers’ well-being and patients’ quality of life, at different social exclusion levels. Design/methodology/approach – An online survey in China’s Anti-Hepatitis B Online Community includes 326 respondents. A combined hierarchical regression analysis and structural equation model test the hypotheses. Findings – Both receiving and giving online social support, as reciprocal altruism behaviors, enhance patients’ well-being. Receiving online social support influences psychological well-being most; giving has the largest impact on existential domains. Social exclusion boosts the benefits of giving online social support but attenuates the benefits of receiving it. Research limitations/implications – This research focusses on the effects of online social support among socially excluded patients. Extensions could rely on objective instead of subjective measures and...

Improving customer well-being through two-way online social support

BACKGROUND
Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 25% to 39% of participants.


OBJECTIVE
We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research.


METHODS
Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model.


RESULTS
Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR >  0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research.


CONCLUSION
The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.

Retaining Participants in Longitudinal Studies of Alzheimer's Disease.

Altruism is a well-established reason underlying research participation. Less is known about altruism in adolescent-parent decision-making about clinical trials enrolling healthy adolescents. This qualitative investigation focused on identifying spontaneous statements of altruism within adolescent-parent (dyadic) discussions of participation in a hypothetical phase I clinical trial related to adolescent sexual health. Content analysis revealed several response patterns to each other's altruistic reasoning. Across 70 adolescent-parent dyads in which adolescents were 14-17 years of age and 91% of their parents were mothers, a majority (61%) of dyadic discussions included a statement reflecting altruism. Parents responded to adolescents' statements of altruism more frequently than adolescents responded to parents' statements. Responses included: expresses concern, reiterates altruistic reasoning, agrees with altruistic reasoning, and adds to/expands altruistic reasoning. Since an altruistic perspective was often balanced with concerns about risk or study procedures, researchers cannot assume that altruism will directly lead to study participation. Optimizing the informed consent process for early phase clinical trials involving healthy adolescents may include supporting parents to have conversations with their adolescents which will enhance their capacity to consider all aspects of trial participation.

https://journals.sagepub.com/doi/pdf/10.1177/1747016115587963

Altruistic reasoning in adolescent-parent dyads considering participation in a hypothetical sexual health clinical trial for adolescents

A growing number of clinical trials use invasive research procedures for screening patients, monitoring the effects of drugs, biomarker analysis, or sham comparators These procedures can be ethically contentious, in part because of concerns about the quality of informed consent provided by patient-volunteers In the first section of this paper, we describe burdens, risks, and benefits associated with certain common invasive, research procedures We next offer a series of arguments about the general properties of a valid consent for such procedures We close by examining what is currently known about consent quality for invasive research procedures against the standards laid out in the second section We conclude that there is little evidence to either confirm or dispel concerns about consent quality for invasive, nondiagnostic research procedures applied in patient-volunteers

Analysis of Consent Validity for Invasive, Nondiagnostic Research Procedures

Background The use of the Pernkopf atlas of human anatomy in surgery presents ethical challenges due to the author’s association with the Nazi regime and the potential depiction of victims of this regime. The atlas was of particular utility to two surgical specialties: nerve surgeons and oral and maxillofacial surgeons. The representation of peripheral nerves and complex head and neck anatomy is probably unequaled in any other atlas of anatomy. While the ethical implications of the use of Pernkopf’s atlas among nerve surgeons have been previously assessed, this study focuses on the volume dedicated to detailed images of head and neck dissections, and the ethical implications of using this atlas by oral and maxillofacial surgeons. Objective To (1) assess the role of the Pernkopf atlas in oral and maxillofacial surgeons’ current practice and (2) determine whether a proposal of four conditions would provide ethical guidance for use in surgery and education. Methods Members of three American oral and maxillofacial surgical societies (ACOMS, ASTMJS, AAOMS) were surveyed and 181 responses collected. The survey introduced the historical origin of the Pernkopf atlas, and respondents were asked whether they would use the atlas under specific conditions that could be a recommendation for its ethical handling. An anatomical plate comparison between Netter’s and Pernkopf’s atlases was performed to compare accuracy and surgical utility. Results Forty-nine percent of respondents were aware of the Pernkopf atlas, and 9% of respondents were currently using it. Amongst those aware of the historical facts, 42% were comfortable using the atlas, 33% uncomfortable, and 25% undecided. The four conditions involving disclosure, bioethical and religious considerations, and remembrance led to 75% of those “uncomfortable” and “undecided” becoming “comfortable” with use. Conclusions Amid recent developments and controversy regarding the Pernkopf atlas, a proposal detailing conditions for an ethical approach may provide guidance in surgical planning and education. Furthermore, this approach has implications for the future preparation and publication of anatomical atlases and their use.

Oral and maxillofacial surgeons' assessment of the role of Pernkopf's atlas in surgical practice.

Keywords ethics, research, endometriosis, motivation ABSTRACT BACKGROUND: The objective of this study was to identify factors motivating women to take part in endometriosis research and to determine if these factors differ for women participating in clinical versus basic science studies. METHODS: A consecutive series of 24 women volunteering for participation in endometriosis-related research were asked to indi- cate, in their own words, why they chose to volunteer. In addition, the women were asked to rate, on a scale of 0 to 10, sixteen potentially motivating factors. The information was gathered in the form of an anonymous self-administered questionnaire. RESULTS: Strong motivating factors (mean score >8) included potential benefit to other women's health, improvement to one's own condition, and participation in scientific advancement. Weak moti- vating factors (mean score <3) included financial compensation, making one's doctor happy, and use of 'natural' products. No differ- ence was detected between clinical and basic science study participants. CONCLUSION: This study is the first study to specifically investi- gate the factors that motivate women to take part in endometriosis research. Understanding why women choose to take part in such research is important to the integrity of the informed consent process. The factors most strongly motivating women to participate in endometriosis research related to improving personal or public health; the weakest, to financial compensation and pleasing the doctor.

What motivates women to take part in clinical and basic science endometriosis research

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Oral and maxillofacial surgeons' assessment of the role of Pernkopf's atlas in surgical practice.

What motivates women to take part in clinical and basic science endometriosis research