Patient-centered Support Research Articles

Improving psychological and social support needs after traumatic birth: A qualitative study

IntroductionEmergency deliveries increase maternal risk for postpartum depression (PPD) and post-traumatic stress disorder (PTSD). One in three women describe their birth experience as traumatic, but patient-centered support needs are unclear. We conducted a qualitative study of women with traumatic birth to identify patient-centered priorities to optimize mental health support. MethodsSemi-structured interviews were conducted with women who experienced an emergency during birth, and who self-identified as experiencing traumatic birth. The Stanford Acute Stress Reaction Questionnaire and PTSD Checklist were completed. Interviews included open-ended questions about birth events that improved or worsened their delivery experience, perceptions of mental, physical, and emotional support provided by staff, and patient perspectives about psychological and social support referrals after emergent deliveries. ResultsA majority of participants met positive screening criteria for PTSD at the time of interviews. Birth experiences were affected by prenatal expectations, as well as the style and quality of clinical staff communication during and after delivery. There were four key themes central to their experiences and perceptions: (1) Emotional Impact and Intensity, (2) Factors Influencing Birth Experience, (3) Perceived Lack of Emotional Support, and (4) Desire for Post-Birth Follow-Up and Support. Participants almost unanimously desired to be offered psychosocial services after birth trauma. ConclusionThere are significant gaps in emotional support and communication for patients experiencing traumatic births. Offering structured, in-hospital mental health referrals may address immediate psychological needs, aid in trauma recovery, and potentially mitigate long-term mental health consequences. These findings advocate for a more holistic approach to postpartum care that prioritizes both physical and emotional well-being.

From Hospital to Home: Applying a Co-design Approach to Determine Key Components of an Intervention to Support Transition-to-Home After Stroke

Abstract Background When people with stroke transition from the hospital back to their homes, they and their families frequently experience multi-faceted unmet needs and feelings of abandonment. Uncertainty surrounds the fundamental components of an intervention intended to support transition-to-home after a stroke. The aim of this study was to utilise a co-design process to identify key components for a patient-centred support intervention facilitating the transition home after stroke, and to explore what might be feasible within a real-world context. Methods The primary researcher, a larger team of researchers, and an individual with lived experience of stroke facilitated a series of three workshops for 12 people with stroke, 6 caregivers, 26 healthcare professionals, and 6 representatives from stroke organisations. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the study aim. Data collection involved making observations during workshops, summarising findings, and reaching group consensus agreement on outputs. The final output was the consequence of facilitated consensus on a prioritisation task. Individuals with lived experience of stroke contributed to study design, ethics, and co-design outputs, providing input for future research and co-facilitating workshops with the research team. Results The co-design group identified 10 key intervention components to support people with stroke and their families during the transition from hospital-to-home. These components focussed on enhancing collaboration, streamlining transition processes, and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community-based healthcare staff in-reach, were considered most feasible to implement. Conclusion The co-design approach, involving a multi-stakeholder group, was strengthened by patient and public involvement. This ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. To further refine, and feasibility test the components for generalisability within the wider Irish healthcare context, additional co-design workshops are required.

Development and Preliminary Validation of a Screener for Digital Health Readiness

While telehealth use has grown, patient uptake is variable, which has the potential to increase health disparities. Identifying and understanding individuals' barriers to digital health readiness can help health systems efficiently deploy resources to provide personalized patient-centered support. To develop and validate an instrument to evaluate digital health readiness to identify and quantify barriers to digital readiness. In this qualitative mixed-methods study conducted from April 26, 2022, to June 8, 2023, the instrument was created in 4 phases. Patients and health care professionals were interviewed to explore barriers to telehealth use, scale items were developed for the screener, cognitive interviews were conducted to refine scale items, and psychometric properties of the screener were evaluated. The study was conducted in an urban, multisite academic health system and the surrounding community. Participants were older than 18 years, English-speaking, and able to provide informed consent. Professionals worked within the Jefferson Health system and were involved in telehealth services. Participants completed a semistructured interview (duration: 6-19 minutes), a cognitive interview (duration: 13-137 minutes), or the draft screener survey (duration: 5-10 minutes). Development and validation of a screener for digital health readiness. Of 519 patients approached, 19 were ineligible, 122 declined, and 11 were excluded from analysis, resulting in inclusion of 367 participants (32 patient interviews, 16 professional interviews, 15 cognitive interviews, 304 psychometric survey testing). All 16 professionals who were approached participated. Most patient participants were Black (46.7%) or White (37.9%), male (56.4%), and had a high school degree or some college (49.6%); mean (SD) age was 45 (23) years for participants in cognitive interviews, 53 (18) years for survey respondents, and 57 (14) years for patient interviews. The structured interviews uncovered 21 concepts, leading to 48 items that were refined through cognitive interviews. Psychometric analyses of the 29 items that emerged from the cognitive interviews resulted in a final screener with 24 items across 2 factors: technical readiness (18 items; factor loading range, 0.488-0.968) and quality-of-care concerns (6 items; factor loading range, 0.619-0.942). In this qualitative study of digital health readiness, the findings suggest that the screener items may be valid to assess the complexity of factors influencing digital health uptake and highlight several areas for potential intervention.

Pulmonary Diseases in Older Patients: Understanding and Addressing the Challenges.

As the global population ages, pulmonary diseases among older people have emerged as a significant and growing public health concern. The increasing incidence of these conditions has led to higher rates of morbidity and mortality among older adults. This perspective study offers a thorough overview of the prevalent pulmonary diseases affecting the elderly demographic. It delves into the challenges encountered during the diagnosis and management of these conditions in older individuals, considering factors such as comorbidities, functional limitations, and medication complexities. Furthermore, innovative strategies and personalized interventions such as precision medicine, advanced therapies, telemedicine solutions, and patient-centered support systems aimed at enhancing the care provided to older individuals grappling with pulmonary disorders are thoroughly explored. By addressing the unique needs and complexities of this vulnerable population, healthcare systems can strive towards improving outcomes and enhancing the quality of life for elderly individuals affected by pulmonary diseases.

Post-exposure prophylaxis, STI testing and factors associated with follow-up attendance: a review of 4159 cases of acute post-sexual assault medical care

BackgroundSexual assault (SA) is a prevalent issue with enduring consequences. Post-SA medical care mainly focuses on injuries, sexually transmitted infection (STI) prevention and detection, as well as preventing unwanted pregnancies....

Exploring the Impact of a Housing Support Service on Hospital Discharge: A Mixed-Methods Process Evaluation in Two UK Hospital Trusts

Delayed discharge from hospital is a global healthcare problem with negative impacts on patient outcomes and the wider health system. Delays to discharge can arise when a patient remains in hospital even when they are medically fit due to nonmedical reasons such as a lack of appropriate housing or social care. However, whilst several nonmedical interventions have been developed to facilitate timely hospital discharge, there remains a lack of evidence on their impact. This study reports on findings from a mixed-methods process evaluation of a newly integrated housing and health service in two United Kingdom- (UK-) based hospitals (one mental health hospital and one general hospital). The service involved housing support coordinators (HSCs) being based within hospitals and supporting inpatients with their housing-related needs. We employed qualitative interviews with service users and hospital/housing staff (N = 16) and routine data analysis (n = 488) to understand the impact of the service and any challenges to service delivery. Service users faced different housing barriers, for example: 28.3% experienced homelessness (n = 136) whilst 80 (16.4%) faced challenges with their accommodation no longer meeting their physical needs. Service users received support for a variety of issues such as assistance with medical priority applications, support to apply for social housing, and referral to other support services. Healthcare professionals at all levels credit the service for improving hospital discharge processes and reducing stress on clinical staff, enabling them to concentrate more effectively on clinical tasks. Key to success is experienced housing staff providing patient-centred support, being integrated within a multidisciplinary team with management and oversight from the health service, and the availability of appropriate housing stock and wider services to support people after discharge. Our findings indicate that other hospitals may benefit from implementing similar housing and health integrated services.

Nutrition and physical activity knowledge, attitudes, and practices of inpatient cirrhosis care providers.

Hospitalization is a high-risk period for cirrhosis-associated sarcopenia and frailty. This study aimed to measure the knowledge, attitudes, and practice patterns (KAP) of multidisciplinary cirrhosis providers about inhospital nutrition and physical activity care. We conducted an online survey of cirrhosis care providers at a combination of 38 hospitals and healthcare centres in Alberta, Canada. Analysis included descriptive statistics and content analysis. Three hundred thirty-eight responses were analyzed. Across all providers, nutrition and physical activity knowledge and attitude (KA) scores were higher than practice (P) scores. Physicians had lower nutrition KA ( P = 0.010) and nutrition P ( P < 0.001) scores than nonphysicians. Previous cirrhosis-related nutrition or physical activity education was associated with higher nutrition KA ( P < 0.001), nutrition P ( P = 0.036), and physical activity P scores ( P < 0.001). Over half of the participants reported not providing patients with educational resources for nutrition or physical activity and not carrying out nutrition screening. Participant suggestions to optimize care included enhancing patient and provider education, standardizing screening and intervention processes, increasing patient-centered support, and promoting collaboration within the healthcare team. Eighty percentage of participants were willing to provide patients with resources if these were readily available. While provider knowledge and attitudes about the importance of nutrition and physical activity in hospitalized patients with cirrhosis are reasonable, there is considerable room to optimize the delivery of best practices in this patient population. Optimization will require readily available educational and personnel resources and interdisciplinary collaboration to promote system change.

Navigation for youth mental health and addictions: protocol for a realist review and synthesis of approaches and practices (The NavMAP standards project)

IntroductionMental health and/or addiction (MHA) concerns affect approximately 1.2 million children and youth in Canada, yet less than 20% receive appropriate treatment for these concerns. Youth who do not receive...

Spirituality, Religion and Breastfeeding: A Scoping Review

IntroductionSpirituality and religion are often used as coping mechanisms during times of struggle or change. A clear understanding of the impact of spirituality and religious beliefs on breastfeeding is essential to providing culturally appropriate care to breastfeeding mothers of diverse religious backgrounds.MethodsA scoping review of evidence-based literature was conducted. A total of 45 studies published globally were reviewed and analyzed.ResultsGlobally, religion as a socio-demographic factor has direct and indirect associations with breastfeeding. Spiritual/religious aspects that serve as motivators for breastfeeding include its emphasis in religious texts; spiritual qualities of breastmilk; prayer; and the influence of faith communities. Spiritual/religious barriers to breastfeeding include milk sharing concerns; pre-lacteal feeds and colostrum beliefs, sexual abstinence during breastfeeding; fasting; modesty concerns; and belief in the evil eye.ConclusionConsidering the diversity in maternal spiritual belief systems, providing patient-centred support and counselling to breastfeeding mothers is vital.

Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease.

Individuals with genetic disease face unique challenges related to navigating dating relationships. While previous studies have explored the impact of hereditary breast and ovarian cancer syndrome on dating, research investigating psychosocial implications for young adults with early-onset multi-organ tumor predisposition syndromes such as von Hippel-Lindau disease (VHL) is scarce. This study assessed young adults' attitudes towards dating and decisions related to disclosing a diagnosis of VHL to a dating partner. Twenty-six young adults with VHL participated in semi-structured interviews exploring this issue, using a guide informed by the literature in consultation with providers and an individual with VHL. Interviews were coded with a primarily deductive approach using codes derived from the literature, with inductive coding employed for perspectives unique to VHL. Our results support previous findings that genetic disease contributes to fear of rejection due to decreased desirability. However, participants report that partners' reactions to VHL uniquely exacerbate this concern due to unfamiliarity with VHL and a perception that it is exceptionally serious, leading to different strategies in disclosure. While many cited negative reactions from partners, participants also described how disclosure can strengthen relationships by deepening trust. Participants discussed a desire for healthcare providers to offer support in this context and described the benefit of speaking with peers about their dating experiences and approaches to disclosure. Our findings provide insight into the diverse needs of young adults with VHL as they approach romantic relationships and decision-making regarding disclosure and highlight the importance of patient-centered support from providers and patient organizations.

Barriers and facilitators related to self-management of shoulder pain: a systematic review and qualitative synthesis

Objective The objective of this review was to identify barriers and facilitators related to self-management from the perspectives of people with shoulder pain and clinicians involved in their care. Data sources CINAHL, MEDLINE, PsycINFO, SPORTDiscus, Embase, ProQuest Health, Web of Science, and Scopus were searched from inception to March 2022. Review methods A meta-aggregative approach to the synthesis of qualitative evidence was used. Two independent reviewers identified eligible articles, extracted the data, and conducted a critical appraisal. Two reviewers independently identified and developed categories, with validation by two further researchers. Categories were discussed among the wider research team and a comprehensive set of synthesized findings was derived. Results Twenty studies were included. From the perspective of patients, three synthesized findings were identified that influenced self-management: (1) support for self-management, including subthemes related to patient-centred support, knowledge, time, access to equipment, and patient digital literacy; (2) personal factors, including patient beliefs, patient expectations, patient motivation, pain, and therapeutic response; and (3) external factors, including influence of the clinician and therapeutic approach. From the perspective of clinicians, two synthesized findings were identified that influenced self-management: (1) support for self-management, including education, patient-centred support, patient empowerment, time, and clinician digital literacy; and (2) preferred management approach, including clinician beliefs, expectations, motivation, therapeutic approach, and therapeutic response. Conclusion The key barriers and facilitators were patient-centred support, patient beliefs, clinician beliefs, pain, and therapeutic response. Most of the included studies focused on exercise-based rehabilitation, and therefore might not fully represent barriers and facilitators to broader self-management.

A99 PHARMACEUTICAL INDUSTRY FUNDING TO GASTROINTESTINAL PATIENT ADVOCACY ORGANIZATIONS

BackgroundPatient advocacy organizations (PAOs) are not-for-profit organizations that aim to support families and individuals afflicted by illnesses. PAOs play a significant role in guiding health policy, providing education to patients, lobbying, and supporting research. Previous studies have demonstrated that PAOs may receive financial payments from pharmaceutical and medical device manufacturers. This may create a risk of conflict of interest.AimsTo assess the prevalence and transparency of financial donations from industry to gastrointestinal patient advocacy groups based in the United States (US).MethodsWe conducted a cross-sectional study to determine the prevalence of industry donations to PAOs. Data was extracted from the Kaiser Health News (KHN) Database, a database that tracked payments from pharmaceutical companies to PAOs in 2015. After an initial list of 1215 PAOs was obtained from the database, authors extracted the annual revenues, websites and mission statements for each PAO. Authors individually screened each organization’s mission statement and website to determine whether their primary scope of focus included gastroenterology. A final list of 11 PAOs with annual revenues surpassing $500,000 USD was included for descriptive analysis. From this list, the annual reports and websites of each group were reviewed to determine the extent of transparency of PAOs disclosing financial relationships with industry sponsors. The primary outcome of our study was the total amount of funding that each PAO received from pharmaceutical companies. The secondary outcome was the self-reported amount of funding stated on each PAO’s website and annual report.ResultsFrom our analysis of 11 PAOs, 9 (81%) organizations received payments from pharmaceutical companies. The median dollar value of donations received was $31,052 USD (IQR=$25 to $302,550). The total dollar value of donations received was $4,059,433 USD. Across the 9 PAOs that received donations, 5 (56%) organizations disclosed a financial relationship with a pharmaceutical company on their website and 2 (22%) disclosed the value of industry donations within a range. No group specified an exact amount of funding received.ConclusionsOur results demonstrate that a majority of US based gastrointestinal PAOs receive funding from pharmaceutical companies. Furthermore, our results show that many PAOs that receive industry funding do not disclose this amount on their website or annual reports. Given their role in providing patient centered support, it is important for PAOs to disclose financial relationships with industry so as to not produce a conflict of interest.Funding AgenciesNone

Helpful factors in a healthcare professional intervention for low-back pain: Unveiled by Heidegger's philosophy.

Low-back pain can be invalidating physically as well as mentally. Despite professional help to treat and prevent low-back pain, the pain often persists, and so do the problems related to low-back pain. An intervention that made it possible for a significant part of patients with low-back pain to improve health and well-being raised the question: Why was it possible to help some and not others? The aim of the present paper was to achieve a deeper understanding of factors patients experienced as helpful in professional support related to low-back pain. This was explored using a hermeneutic-phenomenological approach while analysing 20 interviews with patients with low-back pain purposively chosen interviews conducted in relation to the intervention. An analysis was made using Ricoeur's interpretation theory. Data on both positive and negative experiences were read and reflected upon. We found that healthcare professionals' adoption of a narrative approach facilitating the patient's perspective was perceived as helpful. Patients experienced this as being taken seriously; an experience that could be explained at a deeper, more nuanced level using Heidegger's philosophy. Facilitating the patient's perspective was conditional not only on the professional obtaining access to the patient's perspective but also on understanding and acknowledging the patient's existence. The challenge for healthcare professionals in this respect is to bridge the gap between the consultation's fact-focused concern with the medical implications of low-back pain and the patient's concern with the implications low-back pain has for his or her personal identity and life. Listening to the patient's perspective in itself supports the subjective recovery process, while also supporting the quality of patient-centred support and strengthening the patient's trust in its helpfulness.

Evaluation of the quality of public health nurses' community DOTS practices and its relationship with individual and organizational factors

Objectives By targeting the public health nurses (PHNs) who are expected to be actively involved in the implementation of community DOTS practices, we evaluated the quality of the regional DOTS practices based on the three aspects of "enhancing tuberculosis (TB) treatment adherence," "patient-centered support other than treatment," and "coordination with related organizations." We examined the individual and organizational factors that affect the quality of these practices. Further, we clarified the challenges related to the abilities of PHNs.Methods A self-report questionnaire survey of 958 PHNs from local governments with a TB incidence rate of 15 or more was administered in 2015. This resulted in there being 410 valid responses with a valid response rate of 42.8%. The quality of the community DOTS practices was evaluated based on the three aspects by reviewing the literature on expert PHNs for TB patient support. After a preliminary survey, each was evaluated based on a scale of 10 points. A multiple regression analysis was conducted to understand the relationship between these and the TB control implementation system (organizational factors), the experience and motivation of PHNs to support tuberculosis patients, and the learning situation (individual factors).Results The quality of the community DOTS practices was 7.54±1.69 for "enhancing TB treatment adherence," was 6.91±1.63 for "coordination with related organizations," and was 6.68±1.53 for "patient-centered support." The scores for the first factor were higher than those for the latter two factors (P<0.05). With regard to "patient-centered support," one-fourth of the surveyed PHNs rated their practices as low. Each predictor showed a strong relationship with the quality of community DOTS practices, especially "coordination with related organizations" and "patient-centered support" (r=0.787). The significant organizational factors associated with the quality of the community DOTS practices in terms of each aspect were "making an individual support plan for TB patients" (β=0.112-0.270), "reporting own practices at the DOTS conference as a responsible PHN" (β=0.113-0.173), "attending cohort study meetings" (β=0.129-0.167), and the individual factor of "many years of experience as a PHN" (β=0.210-0.316). Additionally, in the model of "coordination with related organizations," "reading specialized books and journals" (β=0.108) was found to be significant and positively related.Conclusion To improve the quality of the community DOTS practices based on the self-evaluation of PHNs, "patient-centered support" with a low score and high relevance to other aspects is a priority. It was also suggested that it would be useful if the PHNs participated in DOTS evaluations, developed individual patient support plans, presented support plans, and participated in performance evaluations to improve the quality of DOTS practices.

The Care-coordination Approach to Learning Lupus Self-Management: a patient navigator intervention for systemic lupus inpatients

ObjectiveThe Care-coordination Approach to Learning Lupus Self-Management (CALLS) study was designed to improve SLE disease self-management. This study aims to assess the benefits of the intervention compared with existing lupus...

The association between non-communicable disease and hearing aid adoption in older adults with hearing loss

Objective: To assess whether specific non-communicable diseases are associated with hearing aid adoption in older adults with hearing loss. Design: A cross-sectional, observational study. Study sample: Data was obtained from one of the largest pharmacy-led health and beauty retailers in the United Kingdom. In total, 17,172 older adults were included. Results: Greater odds of adopting hearing aids were associated with being older (Odds ratio [OR] = 1.03; 95% confidence interval [CI] = 1.02, 1.03), having fewer self-reported hearing difficulties (OR = 0.61; 95% CI = 0.58, 0.64), and greater audiometric hearing loss (OR = 1.68; 95% CI = 1.54, 1.83). The odds of adopting hearing aids were lower if individuals self-reported hypertension (OR = 0.87; 95% CI = 0.79, 0.97) and diabetes (OR = 0.83; 95% CI = 0.72, 0.95). Using a decision tree model, self-reported hearing difficulties, audiometric hearing loss, and age were the best combination of variables to differentiate between individuals that did and did not adopt hearing aids. Conclusions: This study demonstrates that hearing aid adoption is lower in older adults with cardiovascular disease risk factors. Thus, there is a need for healthcare professionals to identify older adults living with hearing loss and cardiovascular ill-health, ensuring that they receive appropriate patient-centred support to manage their health.

OnCare Connect: A Text-Based Platform to Allow for Earlier Interventions to Decrease Toxicity Progression in Oncology Patients Receiving Chemoradiation

Patients undergoing combined chemotherapy and radiation therapy experience treatment-related toxicities and commonly have unplanned hospital visits as a result of these toxicities. Such unplanned hospital visits can lead to treatment delays and breaks, possibly compromising oncologic outcomes. A text-based platform, OnCare Connect, was used to target this clinical problem and propose a new approach to help manage cancer treatment-related toxicity. Fourteen Head & Neck and Lung cancer patients with locally advanced disease receiving concurrent chemoradiation treatment were enrolled onto OnCare Connect. Text messages were delivered using Way to Health, a HIPAA-compliant texting platform. Patients were enrolled onto OnCare Connect during their 6-7 weeks of treatment and had the option of continuing for 1 month after the end of treatment. Patients were texted at least 3 times each week for check-ins and were able to text in from 8am-8pm daily with questions. In this early phase, we explored the feasibility, safety, and acceptability of this novel technology, and used Fisher’s exact test to compare the CTCAEv4.0 toxicity outcomes of these 14 patients with matched control patients treated at our institution. From April-July 2019, 7 patients with lung cancer and 7 with head and neck cancer treated with concurrent chemoradiation were enrolled onto OnCare Connect. A total of 1,759 text messages were sent and received using Way to Health. OnCare Connect provided medical support 693 times across 867 text messages. The average time to respond to a patient-initiated text message was 3 minutes. A total of 413 treatment related symptoms were detected by OnCare Connect, of which 64 symptoms were detected prior to provider detection. These symptoms were detected an average of 4.5 days prior to first detection by a provider in clinic. Based on natural language processing, symptoms that were most frequently discussed with patients over text included fatigue, pain, nausea, diarrhea, and anorexia. Compared to 42 matched historical control patients, the 14 patients enrolled on OnCare Connect had fewer CTCAE grade 3+ toxicities (p<0.05). Patient enrolled on OnCare Connect had an average weight loss of 2.9lbs compared to 5.2 lbs. for historical control patients (p=0.12). The use of OnCare Connect resulted in fewer patient calls (p=0.08) and patient portal messages (0.04) during and after treatment completion. OnCare Connect connected, supported, and strengthened care at our institution. The patient-centered support texting platform that was created was able to detects symptoms earlier and creates pathways to support patients. OnCare Connect was additionally able to extend care capacity for care teams and provide quality and reliable care, resulting in fewer grade 3+ toxicities compared to matched control patients.

Novel Use of a Social-Media-Based Survey to Detect Regional Differences in Management of Monochorionic-Diamniotic Twins.

This study aims to evaluate the utility of social media to distribute a patient survey on differences in management and outcomes of monochorionic-diamniotic (MCDA) pregnancies. A cross-sectional survey was posted to an English-language MCDA twins patient-centered support group within the social media site, Facebook from April 2, 2018 to June 26, 2018. Subjects were recruited through a technique called "snowballing," whereby individuals shared the survey to assist with recruiting. Patient reported data were analyzed using Chi-square and Kruskal-Wallis's tests to explore characteristics associated with surveillance and outcomes as related to region and provider type. Over 3 months, the post "reached" 14,288 Facebook users, among which 5,653 (40%) clicked on the post. A total of 2,357 respondents with MCDA pregnancies completed the survey. Total 1,928 (82%) were from the United States (US) and 419 (18%) from other countries. Total 85% of patients had co-management with maternal-fetal medicine (MFM), more in the US compared with the rest of the world (87 vs. 74%, p < 0.01). MFM involvement led to increased adherence to biweekly ultrasounds (91 vs. 65%, p < 0.01), diagnosis of monochorionicity by 12 weeks (74 vs. 69%, p < 0.01) and better education about twin-twin transfusion syndrome (90 vs. 66%, p < 0.01). Pregnancies with MFM involvement had a higher take-home baby rate for both babies (92 vs. 89%, p < 0.01) or for at least one baby (98 vs. 93%, p < 0.01) compared with those without MFM involvement. A survey distributed via social media can be effective in evaluating real-life management and outcomes of an uncommon obstetrical diagnosis. This survey elucidates wide international variation in adherence to guidelines, management, and outcomes.

Challenges and opportunities to prevent tuberculosis in people living with HIV in low-income countries.

People living with the human immunodeficiency virus (HIV) (PLHIV) are at high risk for tuberculosis (TB), and TB is a major cause of death in PLHIV. Preventing TB in PLHIV is therefore a key priority. Early initiation of antiretroviral therapy (ART) in asymptomatic PLHIV has a potent TB preventive effect, with even more benefits in those with advanced immunodeficiency. Applying the most recent World Health Organization recommendations that all PLHIV initiate ART regardless of clinical stage or CD4 cell count could provide a considerable TB preventive benefit at the population level in high HIV prevalence settings. Preventive therapy can treat tuberculous infection and prevent new infections during the course of treatment. It is now established that isoniazid preventive therapy (IPT) combined with ART among PLHIV significantly reduces the risk of TB and mortality compared with ART alone, and therefore has huge potential benefits for millions of sufferers. However, despite the evidence, this intervention is not implemented in most low-income countries with high burdens of HIV-associated TB. HIV and TB programme commitment, integration of services, appropriate screening procedures for excluding active TB, reliable drug supplies, patient-centred support to ensure adherence and well-organised follow-up and monitoring that includes drug safety are needed for successful implementation of IPT, and these features would also be needed for future shorter preventive regimens. A holistic approach to TB prevention in PLHIV should also include other important preventive measures, such as the detection and treatment of active TB, particularly among contacts of PLHIV, and control measures for tuberculous infection in health facilities, the homes of index patients and congregate settings.

A Patient-Centered Proposal for Bayesian Analysis of Self-Experiments for Health.

The rise of affordable sensors and apps has enabled people to monitor various health indicators via self-tracking. This trend encourages self-experimentation, a subset of self-tracking in which a person systematically explores potential causal relationships to try to answer questions about their health. Although recent research has investigated how to support the data collection necessary for self-experiments, less research has considered the best way to analyze data resulting from these self-experiments. Most tools default to using traditional frequentist methods. However, the US Agency for Healthcare Research and Quality recommends using Bayesian analysis for n-of-1 studies, arguing from a statistical perspective. To develop a complementary patient-centered perspective on the potential benefits of Bayesian analysis, this paper describes types of questions people want to answer via self-experimentation, as informed by 1) our experiences engaging with irritable bowel syndrome patients and their healthcare providers and 2) a survey investigating what questions individuals want to answer about their health and wellness. We provide examples of how those questions might be answered using 1) frequentist null hypothesis significance testing, 2) frequentist estimation, and 3) Bayesian estimation and prediction. We then provide design recommendations for analyses and visualizations that could help people answer and interpret such questions. We find the majority of the questions people want to answer with self-tracking data are better answered with Bayesian methods than with frequentist methods. Our results therefore provide patient-centered support for the use of Bayesian analysis for n-of-1 studies.