Lived experiences of end-of-life care at home in the UK: a scoping review of qualitative research.

Background Home is the preferred place of care and death for most people with advanced illness. Aim To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. Design and Setting A scoping literature review in accordance with the PRISMA-ScR guideline. Method The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. Results In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. Conclusion There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.

The Impact of Biologic Therapies on Rate of Colectomy in Paediatric-onset Ulcerative Colitis - A Population-Based Cohort Study.

AIM: Biologic therapies have been associated with reduced rate of colectomy in ulcerative colitis (UC) in adults, but data are limited in paediatric-onset UC. Our aim was to define the rate of colectomy in paediatric-onset UC, including post-transition into adult care, and to evaluate the impact of biologic therapies on rate of colectomy. METHOD: All prevalent patients diagnosed with paediatric-onset UC in South-East Scotland were identified from a prospectively accrued database at our regional tertiary centre. Patients exposed to biologics or surgery were identified and further data collected from health records. Kaplan-Meier analysis was used to calculate cumulative risk of colectomy over time. RESULTS: 145 prevalent patients were identified between 2000 and 2021. Median follow-up was 7.9 years (IQR 4.1-13.1). 23 patients (16 %) underwent a colectomy. 50/145 (34 %) patients received biologic therapy, and 13/23 (57 %) patients who underwent colectomy received biologics. The cumulative risk of colectomy across the whole cohort at 1, 5, and 10 years was 3 %, 13 % and 16 %, respectively. Patients exposed to biologics had a higher colectomy rate at 5 and 10 years (22 % and 34 %). Patients in the pre-biologic era (2000-2008) had non-significantly reduced time from diagnosis to colectomy (2.4 vs 3.7 years, p = 0.204). CONCLUSION: We have defined the 1-, 5-, and 10-year colectomy rate in a population-based cohort of Paediatric-onset UC patients. Patients who received biologic therapy had a significantly increased risk of colectomy. Increased severity of disease in these patients may account for the greater colectomy risk. LEVEL OF EVIDENCE: Level 1.

Faster Rate of Correction with Distal Femoral Transphyseal Screws Versus Plates in Hemiepiphysiodesis for Coronal-Plane Knee Deformity: Age- and Sex-Matched Cohorts of Skeletally Immature Patients.

BACKGROUND: Hemiepiphysiodesis (guided-growth) procedures have become the primary method of treatment for coronal-plane knee deformities in skeletally immature patients. Two leading techniques involve the use of a transphyseal screw or a growth modulation plate. However, clinical references for the estimation of correction are lacking, and no consensus has been reached regarding the superiority of one technique over the other. Therefore, the purpose of this study was to compare the rates of correction for distal femoral transphyseal screws and growth modulation plates in age- and sex-matched cohorts with coronal deformities. METHODS: Thirty-one knees were included in each cohort on the basis of propensity scoring by chronological age and sex, and radiographic images were retrospectively reviewed preoperatively and postoperatively. Each case was measured for limb length, mechanical axis deviation (MAD), mechanical lateral distal femoral angle (LDFA), and bone age. RESULTS: Both the MAD and LDFA rate of correction significantly differed between the screw and plate cohorts. The MAD rate of correction was observed to be 0.42 ± 0.37 mm/week (1.69 mm/month) in the plate cohort and 0.66 ± 0.51 mm/week (2.64 mm/month) in the screw cohort. The LDFA rate of correction was observed to be 0.12° ± 0.13°/week (0.50°/month) in the plate cohort and 0.19° ± 0.19°/week (0.77°/month) in the screw cohort. CONCLUSIONS: The current study provides simple clinical references for the rate of correction of MAD and the LDFA for 2 methods of hemiepiphysiodesis. The results suggest that transphyseal screws may correct coronal knee deformities during the initial treatment stage more quickly than growth modulation plates in distal femoral guided growth. LEVEL OF EVIDENCE: Therapeutic Level III . See Instructions for Authors for a complete description of levels of evidence.

Inequalities in access to NHS primary care dental services in Scotland during the COVID-19 pandemic.

Introduction This study aimed to quantify the impact of the COVID-19 pandemic on access and inequalities in primary care dental services among children and adults in Scotland.Methods Access was measured as any NHS Scotland primary care dental contacts derived from administrative data from January 2019 to May 2022, linked to the area-based Scottish Index of Multiple Deprivation for children and adults, and related to population denominator estimates from National Record Scotland. Inequalities for pre-pandemic (January 2019-January 2020) and recent (December 2021-February 2022, and March 2022-May 2022) periods for both children and adults were calculated and compared using the slope index of inequality and relative index of inequality.Results Following the first lockdown (March 2020) there was a dramatic fall to near zero dental contacts, followed by a slow recovery to 64.8% of pre-pandemic levels by May 2022. There was initial widening of relative inequalities in dental contacts in early 2022, which, more recently, had begun to return to pre-pandemic levels.Conclusion COVID-19 had a major impact on access to NHS primary dental care, and while inequalities in access are apparent as services recover from lockdown, these inequalities are not a new phenomenon.

Improving participation and engagement with a COVID-19 surveillance programme in an outpatient setting.

BACKGROUND: On 3 August 2020, Public Health Scotland commenced a prospective surveillance study to monitor the prevalence of COVID-19 among asymptomatic outpatients attending dental clinics across 14 health boards in Scotland. OBJECTIVES: The primary aim of this quality improvement project was to increase the number of COVID-19 tests carried out in one of the participating sites, Glasgow Dental Hospital and School. The secondary aim was to identify barriers to patient participation and staff engagement when implementing a public health initiative in an outpatient setting. METHOD: A quality improvement working group met weekly to discuss hospital findings, identify drivers and change ideas. Details on reasons for patient non-participation were recorded and questionnaires on project barriers were distributed to staff. In response to findings, rapid interventions were implemented to fast-track increases in the numbers of tests being carried out. RESULTS: Over 16 weeks, 972 tests were carried out by Glasgow Dental Hospital and School Secondary Care Services. The number of tests per week increased from 19 (week 1) to 129 (week 16). This compares to a similar 'control' site, where the number of tests carried out remained unchanged; 38 (week 1) to 36 (week 16). The most frequent reason given for non-participation was fear that the swab would hurt. For staff, lack of time and forgetting to ask patients were identified as the most significant barriers. CONCLUSION: Public health surveillance programmes can be integrated rapidly into outpatient settings. This project has shown that a quality improvement approach can be successful in integrating such programmes. The key interventions used were staff engagement initiatives and front-line data collection. Implementation barriers were also identified using staff questionnaires.

Recognising and Treating Complicated Fissuring Perianal Crohn Disease: A South-East Scotland Cohort Study.

ABSTRACT: Fissuring perianal Crohn disease (CD) is not recognised as a perianal phenotype in Montreal/Paris inflammatory bowel disease classifications; however, can occasionally present as complicated disease with severe perianal pain driving increasingly intensive medical therapy despite well controlled luminal disease. We identified a regional cohort of prospectively acquired incident cases of paediatric CD diagnosed <16 years of age in South-East Scotland over a 19-year period (1999-2018), and conducted a retrospective review of complicated fissuring perianal CD causing severe pain related to anal sphincter complex spasm at defecation. Two hundred forty-seven new cases of paediatric CD were diagnosed with complicated fissuring perianal disease identified in 4 described cases (cumulative incidence 1.6%). These patients with marked fissuring and refractory anal sphincter complex spasm required neurostimulation-guided, 4-quadrant, anal intrasphincteric botulinum toxin (BT). All experienced immediate success, measured by cessation of spasms, with variable ongoing symptom relief after median (range) 3 (2-5) BT injections.

Retrospective analysis of testicular outcomes following laparoscopic two-stage Fowler Stephens orchidopexy.

AIM OF THE STUDY: Few large series report outcomes for laparoscopic two-stage Fowler Stephens orchidopexy (LFSO). The aims were to evaluate testicular outcomes and to identify factors predictive of successful outcome. METHOD: A retrospective case series of children undergoing laparoscopic surgery for impalpable testes between May 1996 and March 2018 was reviewed. Data were collected from case and operative records. The primary outcomes of interest were testicular atrophy or re-ascent. Regression analysis was conducted to identify factors predictive of successful outcome. Data was expressed as median (IQR). RESULTS: Of 279 patients (300 testes) undergoing laparoscopy for impalpable testis, 114 patients (128 testes) underwent LFSO. Eighty-five patients (96 testes) had adequate follow-up available (53 left; 43 right). Age at first stage was 19 (IQR 13-36) months. Fifteen children had relevant co-morbidities. Time between procedures was 7 (IQR 6-8) months. Longest follow-up available was 12.5 months (IQR 6.8-19.8). Atrophy occurred in 8 testes (8.3%), and ascent occurred in 6 (6.3%). No factors were significantly predictive of success, although a trend towards atrophy was seen amongst testes undergoing gubernacular division compared with a gubernaculum-sparing technique (p = 0.06; OR 3; 95% CI 0.97-9.3). CONCLUSION: A successful outcome was seen amongst 82 of 96 testes (85%) undergoing LFSO, similar to previous reports. No factors were identified that significantly predicted outcome. Number of adverse outcomes was limited (hence possibility of type II error), and therefore preservation of the gubernaculum may reduce risk of testicular atrophy. TYPE OF STUDY: Prognosis Study. LEVEL OF EVIDENCE: Level IV.

Depression precedes, but does not follow, gestational diabetes.

OBJECTIVES: To determine whether past history of depression is associated with increased rates of gestational diabetes, and whether history of gestational diabetes is associated with increased rates of postpartum depression. RESEARCH DESIGN: Data for this case-control study consisted of de-identified chart records for 1439 women who received pregnancy care at a large university hospital between 1998 and 2017. RESULTS: A history of depression prior to pregnancy was associated with gestational diabetes requiring insulin, although not with subtler degrees of gestational hyperglycemia. Diabetes in pregnancy was not associated with an increased risk of postpartum depression. Trauma history was associated with both impaired glucose tolerance in pregnancy and postpartum depression. CONCLUSIONS: Past episodes of depression increase risk for the most severe form of gestational diabetes; however, gestational diabetes does not contribute significantly to risk for postpartum depression. This suggests a unidirectional association, unlike the bidirectional association of diabetes with depression among the general population. History of trauma increases risk for both gestational hyperglycemia and postpartum depression, suggesting important health effects of trauma that may differ measurably from those associated with depression.

Learning from Excellence: the 'Yaytix' programme.

BACKGROUND AND AIMS: Learning from error can have a negative impact on the staff involved in the error ('second victim phenomenon'1). We created a project, based on the principles of the Learning from Excellence project,2 to learn from excellence and correct the imbalance of negative to positive feedback in the context of hospital practice. METHODS AND RESULTS: Using a questionnaire, we surveyed staff on existing feedback mechanisms and morale. We then introduced a system where staff recorded and commented on examples of excellence in practice. Recipients and their supervisors received copies of these reports and the feedback was analysed and discussed with senior staff (consultant, senior charge nurse, managers). We re-audited the staff two months after starting this project and noted improvements in staff morale and in positive reporting. CONCLUSIONS: This project has improved the process of giving and learning from positive feedback and had a significant impact on staff morale. We can also demonstrate an example of improved clinical practice (from feedback received) and will now attempt to measure clinical outcomes with a new prospective study. Finally, we hope to set up a regional programme of reporting excellence in South-East Scotland.

Changing Prescribing Behavior in the United States: Moving Upstream in Opioid Prescription Education.

In the US, deaths from prescription opioids have quadrupled since 1999, prompting authorities to declare an "opioid abuse" crisis. Rising overdose deaths were attributed to trends in the overprescription of opioids, specifically the strength and duration of the initial prescription. We describe educational interventions designed to control healthcare professionals' (HCPs) opioid prescribing in the wake of this crisis. A review of relevant programs for practicing providers, medical residents, and medical students reveals a focus on educational interventions that we describe, borrowing from sociologist John McKinlay's metaphor for public health interventions, as "downstream." These downstream interventions concentrate on regulating and educating practicing HCPs rather than transforming the training environment for medical students and residents. We draw on theories of behavior change to call for the development of complementary "upstream" educational programs for future practitioners that focus on structural and psychosocial factors and may contribute to more sustainable behavior change outcomes.

The Telescoping Phenomenon: Origins in Gender Bias and Implications for Contemporary Scientific Inquiry.

BACKGROUND: In an article published in International Journal of the Addictions in 1989, Nick Piazza and his coauthors described "telescoping," an accelerated progression through "landmark symptoms" of alcoholism, among a sample of recovering women. OBJECTIVES: The aim of this critical analysis is to apply a feminist philosophy of science to examine the origins of the framework of telescoping research and its implications for contemporary scientific inquiry. METHODS: A feminist philosophy of science framework is outlined and applied to key source publications of telescoping literature drawn from international and United States-based peer-reviewed journals published beginning in 1952. RESULTS: A feminist philosophy of science framework identifies gender bias in telescoping research in three ways. First, gender bias was present in the early conventions that laid the groundwork for telescoping research. Second, a "masculine" framework was present in the methodology guiding telescoping research. Third, gender bias was present in the interpretation of results as evidenced by biased comparative language. CONCLUSIONS: Telescoping research contributed to early evidence of critical sex and gender differences helping to usher in women's substance abuse research more broadly. However, it also utilized a "masculine" framework that perpetuated gender bias and limited generative, novel research that can arise from women-focused research and practice. A feminist philosophy of science identifies gender bias in telescoping research and provides an alternative, more productive approach for substance abuse researchers and clinicians.

Doctoring Undercover: updating the educational tradition of shadowing.

BACKGROUND: Premedical students are educated in basic biological and health sciences. As a complement to traditional premedical coursework, medical school applicants are encouraged to shadow practitioners, with the hope that observation will introduce students to the culture and practice of healthcare. Yet the shadowing experience varies widely across practitioners and institutions; resources that guide students' critical reflection and structure the experience are scarce. DEVELOPMENT: A pilot experiential learning course, Doctoring Undercover: Shadowing and the Culture of Medicine, was developed to fill this gap. The course consisted of three parts: an introduction to medical culture through the disciplines of medical sociology, history, anthropology, and bioethics; a site placement in which students applied these fields' analytical techniques to the study of medical culture and practice; and the development of an online activity guide that other premedical students may adapt to their shadowing circumstances. IMPLEMENTATION: Students reported that they were exposed to new disciplinary perspectives and interprofessional environments that they would not traditionally encounter. Students' contributions to the shadowing guide encouraged active learning and reflection on the dynamics of effective patient-provider relationships and shadowing experiences. FUTURE DIRECTIONS: Locally, the class may be scaled for a larger group of premedical students and incorporated into a formal pathway program for premedical students; the content will also be integrated into the clinical medicine course for first-year medical students. Online, the guide will be promoted for use by other institutions and by individuals planning extracurricular shadowing experiences; feedback will be solicited. Tools for evaluating the short- and long-term impact of the course and guide will be developed and validated. Observational and experimental studies of the course's impact should be conducted. ABBREVIATIONS: ICM: Introduction to Clinical Medicine; SCE: Selective Clinical Experiences.

Roles of Inflammation and Depression in the Development of Gestational Diabetes.

Inflammation, the body's response to harmful external agents, has long been found to be associated with depressive symptoms. The relationship between inflammation and depression is well established in the general population of people with depression, but is less so among perinatal women. Depression in the perinatal period is a common disorder, however available data do not indicate that there is a specific inflammatory picture associated with perinatal depression. We suggest that perinatal depression may be a heterogeneous construct, and that inflammation may be relevant to it in the context of other inflammatory morbidities of pregnancy. In this review we explore the available support for the hypothesis that inflammation associated with depression can represent a precipitating insult for the development of gestational diabetes, a known inflammatory morbidity of pregnancy.

Partner Incarceration and African-American Women's Sexual Relationships and Risk: A Longitudinal Qualitative Study.

Racialized mass incarceration is associated with racial/ethnic disparities in HIV and other sexually transmitted infections (STIs) in the US. The purpose of this longitudinal qualitative study was to learn about the processes through which partner incarceration affects African-American women's sexual risk. Four waves of in-depth qualitative interviews were conducted in 2010-2011 with 30 women in Atlanta, Georgia (US) who had recently incarcerated partners. Approximately half the sample misused substances at baseline. Transcripts were analyzed using grounded theory. For over half the sample (N = 19), partner incarceration resulted in destitution, and half of this group (N = 9) developed new partnerships to secure shelter or food; most misused substances. Other women (N = 9) initiated casual relationships to meet emotional or sexual needs. When considered with past research, these findings suggest that reducing incarceration rates among African-American men may reduce HIV/STIs among African-American women, particularly among substance-misusing women, as might rapidly linking women with recently incarcerated partners to housing and economic support and drug treatment.

Peter Bourne's drug policy and the perils of a public health ethic, 1976-1978.

As President Jimmy Carter's advisor for health issues, Peter Bourne promoted a rational and comprehensive drug strategy that combined new supply-side efforts to prevent drug use with previously established demand-side addiction treatment programs. Using a public health ethic that allowed the impact of substances on overall population health to guide drug control, Bourne advocated for marijuana decriminalization as well as increased regulations for barbiturates. A hostile political climate, a series of rumors, and pressure from both drug legalizers and prohibitionists caused Bourne to resign in disgrace in 1978. We argue that Bourne's critics used his own public health framework to challenge him, describe the health critiques that contributed to Bourne's resignation, and present the story of his departure as a cautionary tale for today's drug policy reformers.

Risk of incomplete pyloromyotomy and mucosal perforation in open and laparoscopic pyloromyotomy.

BACKGROUND: Despite randomized controlled trials and meta-analyses, it remains unclear whether laparoscopic pyloromyotomy (LP) carries a higher risk of incomplete pyloromyotomy and mucosal perforation compared with open pyloromyotomy (OP). METHODS: Multicenter study of all pyloromyotomies (May 2007-December 2010) at nine high-volume institutions. The effect of laparoscopy on the procedure-related complications of incomplete pyloromyotomy and mucosal perforation was determined using binomial logistic regression adjusting for differences among centers. RESULTS: Data relating to 2830 pyloromyotomies (1802 [64%] LP) were analyzed. There were 24 cases of incomplete pyloromyotomy; 3 in the open group (0.29%) and 21 in the laparoscopic group (1.16%). There were 18 cases of mucosal perforation; 3 in the open group (0.29%) and 15 in the laparoscopic group (0.83%). The regression model demonstrated that LP was a marginally significant predictor of incomplete pyloromyotomy (adjusted difference 0.87% [95% CI 0.006-4.083]; P=0.046) but not of mucosal perforation (adjusted difference 0.56% [95% CI -0.096 to 3.365]; P=0.153). Trainees performed a similar proportion of each procedure (laparoscopic 82.6% vs. open 80.3%; P=0.2) and grade of primary operator did not affect the rate of either complication. CONCLUSIONS: This is one of the largest series of pyloromyotomy ever reported. Although laparoscopy is associated with a statistically significant increase in the risk of incomplete pyloromyotomy, the effect size is small and of questionable clinical relevance. Both OP and LP are associated with low rates of mucosal perforation and incomplete pyloromyotomy in specialist centers, whether trainee or consultant surgeons perform the procedure.

"He Was the Story of My Drug Use Life": A Longitudinal Qualitative Study of the Impact of Partner Incarceration on Substance Misuse Patterns Among African American Women.

This NIH-funded longitudinal qualitative study explored pathways through which partner incarceration affected substance misuse among African American women. Four waves of semi-structured interviews were conducted with 17 substance-misusing African American women whose partners had recently been incarcerated. Data were collected in Atlanta, Georgia, during 2010-2011. Transcripts were analyzed using grounded theory methods. Analyses suggest that partner incarceration initially precipitated multiple crises in women's lives (e.g., homelessness); over time, and with formal and informal support, women got their lives "back on track." Substance misuse declined over time, though spiked for some women during the crisis period. We discuss implications for research and interventions.