Are UK Policies and Practices for Regulated Donor Insemination Forcing Women to Find Unregulated Sperm Donors Online? A Perspective on the Available Evidence.

In recent years, there has been an increase in women obtaining donor sperm via unregulated websites and social media. In this article, we bring together the disparate evidence in this emerging field to consider whether restrictive UK policies and practices for regulated clinical donor insemination (DI) are a potential explanation for the growing use of the currently unregulated, online route to donor insemination. To this end, we examine the nature of the National Institute for Health and Care Excellence (NICE) guidelines, recent data provided by the Human Fertilisation and Embryology Authority (HFEA), and prior research on who uses online sperm donation and their reasons for doing so. In addition, we highlight why this issue is important by outlining some of the benefits and drawbacks of the unregulated route. We argue that, whilst there are many factors driving the unregulated route to DI, restrictive UK policies and practices for regulated DI might be one of these. We conclude that turning our attention to structural barriers, such as regulated DI policies and practices, is necessary to produce more definitive evidence of this potential issue, and that adopting a Reproductive Justice framework could lead to more equitable provision of regulated DI services.

Development and evaluation of a patient decision aid for patients considering ongoing medical or surgical treatment options for ulcerative colitis using a mixed-methods approach: protocol for DISCUSS study.

INTRODUCTION: Approximately 20%-30% of patients with ulcerative colitis (UC) require surgery, the majority of these being elective due to chronic symptoms refractory to medical treatment. The decision for surgery is difficult and dependent on patient preferences. Current resources for patients considering surgery have been found not to meet minimum international standards. The overall aim of the 'DISCUSS' study is to develop and evaluate a new patient decision aid (PtDA) for patients considering surgery for UC created in line with international minimum standards. METHODS AND ANALYSIS: This is a prospective mixed-methods study of adults (18+ years) who are considering surgical intervention for UC across two regional centres in Yorkshire, UK. This study is in three stages. In stage 1 we will develop the PtDA and its content via systematic reviews and a patient questionnaire. In stage 2 we will assess the face validity of the PtDA using mixed-methods on key stakeholders using both semistructured interviews and questionnaires, following which the PtDA will be refined. In stage 3 we will assess the acceptability of using the PtDA in clinical practice. This will use a mixed-methods approach on clinicians and patients who are considering undergoing elective surgery. Questionnaires including the Preparation for Decision-Making Scale, a measure of anxiety and decisional conflict will be analysed at two timepoints using paired sample t-tests and CIs. Interviews with patients and clinicians will be analysed using thematic analysis. ETHICS AND DISSEMINATION: Research ethics approval from North East-Tyne & Wear South Research Ethics Committee (Ref: 19/NE/0073) and Health Research Authority approval (Ref: 257044) have been granted. Results will be published in open access peer-reviewed journals, presented in conferences and distributed through the Crohn's and Colitis UK charity. External endorsement will be sought from the International Patient Decision Aid Standards Collaboration inventory of PtDAs. PROSPERO REGISTRATION NUMBER: CRD42018115513, CRD42019126186, CRD42019125193.

The Informational Needs and Preferences of Patients Considering Surgery for Ulcerative Colitis: Results of a Qualitative Study.

Background: Patients considering surgery for ulcerative colitis (UC) face a difficult decision as surgery may or may not improve quality of life. National Institute for Health and Care Excellence guidelines for UC emphasize the importance of providing quality preoperative information to patients but note no quality studies for the desired content of this information. Our aim was to explore patient information preferences prior to undergoing surgery for ulcerative colitis. Methods: Semistructured interviews with patients who underwent an operation and patients who considered but declined an operation were conducted. Interviews explored informational preferences, with emphasis on preoperative information given, preoperative information desired but not received, and retrospective informational desires. Interviews were transcribed and coded using an inductive thematic analysis using NVivo software. Data saturation was assessed after 12 interviews, with interviews continuing until saturation was achieved. Ethical approval was gained prior to interviews commencing (16/NW/0639). Results: A total of 16 interviews were conducted before data saturation was achieved (male n = 7, female n = 9). Eight patients declined surgery, and 8 opted for subtotal colectomy with permanent end ileostomy (n = 5) or ileoanal pouch (n = 3). A total of 4 themes and 14 subthemes were identified. Three dominant subthemes of informational shortcomings emerged: "long-term effects of surgery," "practicalities of daily living," and "long-term support." Peer support was desired by patients but was infrequently supported by health care professionals. Conclusions: Current preoperative information does not address patient informational needs. Surgical consultations should be adapted to suit patient preferences. Clinical practice may need to be altered to ensure that patients are better supported following surgery.