Browsing by Author "Cooper, Alexandra"

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    A conceptual framework for patient-centered fertility treatment.
    (Reproductive health, 2017-09-07) Duthie, Elizabeth A; Cooper, Alexandra; Davis, Joseph B; Schoyer, Katherine D; Sandlow, Jay; Strawn, Estil Y; Flynn, Kathryn E
    BACKGROUND:Patient-centered care is a pillar of quality health care and is important to patients experiencing infertility. In this study we used empirical, in-depth data on couples' experiences of infertility treatment decision making to inform and revise a conceptual framework for patient-centered fertility treatment that was developed based on health care professionals' conceptualizations of fertility treatment, covering effectiveness, burden, safety, and costs. METHODS:In this prospective, longitudinal mixed methods study, we collected data from both members (separately) of 37 couples who scheduled an initial consult with a reproductive specialist. Data collection occurred 1 week before the initial consultation, 1 week after the initial consultation, and then roughly 2, 4, 8, and 12 months later. Data collection included semi-structured qualitative interviews, self-reported questionnaires, and medical record review. Interviews were recorded, transcribed, and content analyzed in NVivo. A single coder analyzed all transcripts, with > 25% of transcripts coded by a second coder to ensure quality control and consistency. RESULTS:Content analysis of the interview transcripts revealed 6 treatment dimensions: effectiveness, physical and emotional burden, time, cost, potential risks, and genetic parentage. Thus, the revised framework for patient-centered fertility treatment retains much from the original framework, with modification to one dimension (from safety to potential risks) and the addition of two dimensions (time and genetic parentage). For patients and their partners making fertility treatment decisions, tradeoffs are explicitly considered across dimensions as opposed to each dimension being considered on its own. CONCLUSIONS:Patient-centered fertility treatment should account for the dimensions of treatment that patients and their partners weigh when making decisions about how to add a child to their family. Based on the lived experiences of couples seeking specialist medical care for infertility, this revised conceptual framework can be used to inform patient-centered treatment and research on infertility and to develop decision support tools for patients and providers.
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    Institutional review boards' use and understanding of certificates of confidentiality.
    (PloS one, 2012-01) Beskow, Laura M; Check, Devon K; Namey, Emily E; Dame, Lauren A; Lin, Li; Cooper, Alexandra; Weinfurt, Kevin P; Wolf, Leslie E
    Certificates of Confidentiality, issued by agencies of the U.S. government, are regarded as an important tool for meeting ethical and legal obligations to safeguard research participants' privacy and confidentiality. By shielding against forced disclosure of identifying data, Certificates are intended to facilitate research on sensitive topics critical to the public's health. Although Certificates are potentially applicable to an extensive array of research, their full legal effect is unclear, and little is known about stakeholders' views of the protections they provide. To begin addressing this challenge, we conducted a national survey of institutional review board (IRB) chairs, followed by telephone interviews with selected chairs, to learn more about their familiarity with and opinions about Certificates; their institutions' use of Certificates; policies and practices concerning when Certificates are required or recommended; and the role Certificates play in assessments of research risk. Overall, our results suggest uncertainty about Certificates among IRB chairs. On most objective knowledge questions, most respondents chose the incorrect answer or 'unsure'. Among chairs who reported more familiarity with Certificates, composite opinion scores calculated based on five survey questions were evenly distributed among positive, neutral/middle, and negative views. Further, respondents expressed a variety of ideas about the appropriate use of Certificates, what they are intended to protect, and their effect on research risk. Nevertheless, chairs who participated in our study commonly viewed Certificates as a potentially valuable tool, frequently describing them as an 'extra layer' of protection. These findings lead to several practical observations concerning the need for more stakeholder education about Certificates, consideration of Certificates for a broader range of studies, the importance of remaining vigilant and using all tools available to protect participants' confidentiality, and the need for further empirical investigation of Certificates' effect on researchers and research participants.
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    Priorities for family building among patients and partners seeking treatment for infertility.
    (Reprod Health, 2017-04-05) Duthie, Elizabeth A; Cooper, Alexandra; Davis, Joseph B; Sandlow, Jay; Schoyer, Katherine D; Strawn, Estil; Flynn, Kathryn E
    BACKGROUND: Infertility treatment decisions require people to balance multiple priorities. Within couples, partners must also negotiate priorities with one another. In this study, we assessed the family-building priorities of couples prior to their first consultations with a reproductive specialist. METHODS: Participants were couples who had upcoming first consultations with a reproductive specialist (N = 59 couples (59 women; 59 men)). Prior to the consultation, couples separately completed the Family-Building Priorities Tool, which tasked them with ranking from least to most important 10 factors associated with family building. We describe the highest (top three) and lowest (bottom three) priorities, the alignment of priorities within couples, and test for differences in prioritization between men and women within couples (Wilcoxon signed rank test). RESULTS: Maintaining a close and satisfying relationship with one's partner was ranked as a high priority by majorities of men and women, and in 25% of couples, both partners ranked this factor as their most important priority for family building. Majorities of men and women also ranked building a family in a way that does not make infertility obvious to others as a low priority, and in 27% of couples, both partners ranked this factor as the least important priority for family building. There were also differences within couples that involved either men or women ranking a particular goal more highly than their partners. More women ranked two factors higher than did their partners: 1) that I become a parent one way or another (p = 0.015) and 2) that I have a child in the next year or two (p < 0.001), whereas more men ranked 4 factors higher than their partners: 1) that our child has [woman's] genes (p = 0.025), 2) that our child has [man's] genes (p < 0.001), 3) that I maintain a close relationship with my partner (p = 0.034), and 4) that I avoid side effects from treatment (p < 0.001). CONCLUSIONS: Clinicians who support patients in assessing available family-building paths should be aware that: (1) patients balance multiple priorities as a part of, or beside, becoming a parent; and (2) patients and their partners may not be aligned in their prioritization of achieving parenthood. For infertility patients who are in relationships, clinicians should encourage the active participation of both partners as well as frank discussions about each partner's priorities for building their family.
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    Too much time? Time use and fertility-specific quality of life among men and women seeking specialty care for infertility.
    (BMC psychology, 2019-07-09) Cusatis, Rachel; Fergestrom, Nicole; Cooper, Alexandra; Schoyer, Kate D; Kruper, Abbey; Sandlow, Jay; Strawn, Estil; Flynn, Kathryn E
    BACKGROUND:There are known gender differences in the impacts infertility has on quality of life and well-being. Less is known about how infertile couples spend time on fertility-related tasks and associations with quality of life. The purpose of this study is to evaluate whether time spent on tasks related to family-building decision-making (including research, reflection, discussions with partner, discussions with others, and logistics) were associated with fertility-specific quality of life or anxiety among new patients. METHODS:Couples or individuals (N = 156) with upcoming initial consultations with a reproductive specialist completed the Fertility Quality of Life (FertiQoL) tool, which produces a Core (total) score and four subscales: Emotional, Relational, Social, and Mind-Body. We developed questions to measure time spent in the previous 24 h on tasks related to family-building. We tested for differences by gender in time use (McNemar's Test) and used ordinary least squares regression to analyze the relationship between time use and FertiQoL scores. RESULTS:In the week before a new consultation, a higher percentage of women reported time spent in the past 24 h in research, reflecting, discussion with others, and logistics compared to male partners (all p < 0.05). In adjusted models, more time spent reflecting was associated with worse FertiQoL scores for both men and women, as well as with higher anxiety for men. Time spent in discussion with others was associated with higher anxiety for women but better Social FertiQoL scores for men. CONCLUSIONS:Couples seeking infertility consultation with a specialist reported spending time on tasks related to family-building before the initial visit. There were gender differences in the amount of time spent on these tasks, and time was associated with fertility-specific quality of life and anxiety.