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Patient partner AND health

Hildegunn Høberg-Vetti, Geir Egil Eide, Elen Siglen, Wenche Listøl, Marianne Tveit Haavind, Nicoline Hoogerbrugge, Cathrine Bjorvatn
BACKGROUND: Genetic testing is increasing in patients newly diagnosed with cancer. This study investigated the levels, course and predictors of cancer-related distress, defined as intrusion and avoidance, in women undergoing BRCA1/2 testing without pretest genetic counseling shortly after a diagnosis of breast or ovarian cancer. MATERIAL AND METHODS: Unselected for family history or age, 259 women with breast cancer and 50 women with ovarian cancer, underwent BRCA1/2 testing shortly after diagnosis...
October 18, 2018: Acta Oncologica
Anna Linda Zignego, Monica Monti, Laura Gragnani
Hepatitis C Virus (HCV) infection is major health problem worldwide, with 150 million infected people according to recent epidemiologic estimations. The introduction of direct-acting antivirals made a revolutionary change in the management of HCV infected patients with surprisingly high rates of antiviral response, improved tolerability and reduced time of treatment. Sofosbuvir, in combination with different partner drugs, has been the molecule that led this incredible change. The last generation of SOF-based regimens, namely Sofosbuvir/Velpatasvir, represents a single tablet, once a day, pangenotypic and pan-fibrotic combination, demonstrated to be safe and effective in almost all type of HCV infected individuals...
October 8, 2018: Acta Bio-medica: Atenei Parmensis
Maria R Dahm, Andrew Georgiou, Robert Herkes, Anthony Brown, Julie Li, Robert Lindeman, Andrea R Horvath, Graham Jones, Michael Legg, Ling Li, David Greenfield, Johanna I Westbrook
Background Diagnostic testing provides integral information for the prevention, diagnosis, treatment and management of disease. Inadequate test result reporting and follow-up is a major risk to patient safety. Factors contributing to failure to follow-up test results include unclear delineation of responsibility about who is meant to act on a test result; poor coordination across different levels of care; and the absence of integrated health information systems for the efficient information communication. Methods A 2016 Australian Stakeholder Forum brought together over 30 representatives from 14 different consumer, clinical and management stakeholder organisations to discuss safe and effective test result communication, management and follow-up...
October 17, 2018: Diagnosis
Ronald M Harden
Significant developments in medical education are necessary if medical schools are to respond to the pressures from advances in medicine, changes in health care delivery, and patient and public expectations. This article describes 10 key features of the medical school of the future: the move from the ivory tower to the real world, from just-in-case learning to just-in-time learning, from the basic science clinical divide to full integration, from undervalued teaching and the teacher to recognition of their importance, from the student as a client to the student as partner, from a mystery tour to a mapped journey, from standard uniform practice to an adaptive curriculum, from a failure to exploit learning technology to its effective and creative use, from assessment of learning to assessment for learning, and from working in isolation to greater collaboration...
October 16, 2018: Medical Teacher
Qian Long, Carol Kingdon, Fan Yang, Michael Dominic Renecle, Shayesteh Jahanfar, Meghan A Bohren, Ana Pilar Betran
BACKGROUND: China has witnessed a rapid increase of cesarean section (CS) rates in recent years. Several non-clinical factors have been cited as contributing to this trend including maternal request and perceived convenience. We aimed to assess preferences for mode of delivery and reasons for preferences for CS in China to inform the development of future interventions to mitigate unnecessary CSs, which are those performed in the absence of medical indications. METHODS AND FINDINGS: We conducted a mixed-methods systematic review and included longitudinal, cross-sectional, and qualitative studies in mainland China, Hong Kong, and Taiwan that investigated preferences for mode of delivery among women and family members and health professionals, and the reasons underlying such preferences...
October 2018: PLoS Medicine
Vidhu Dhawan, Manoj Kumar, Dipika Deka, Neena Malhotra, Neeta Singh, Vatsla Dadhwal, Rima Dada
The events occurring at the maternal-foetal interface define a successful pregnancy but the current paradigm has shifted towards assessing the contribution of spermatozoa for embryogenesis. Spermatozoa with defective DNA integrity may fertilise the oocyte but affect subsequent embryonic development. The present case-control study was conducted in male partners of couples experiencing recurrent pregnancy loss (RPL) to assess the gene expression of spermatozoal FOXG1, SOX3, OGG1, PARP1, RPS6, RBM9, RPS17 and RPL29...
October 15, 2018: Andrologia
Christoffer Aam Ingvaldsen, Tyge Tind Tindholdt, Kim Alexander Tønseth
Background: The dermolipectomy of the deep inferior epigastric artery perforator (DIEAP) flap procedure is designed to give an end result as seen with abdominoplasty (AP). Several steps of an AP are, however, not routinely performed. This study compared the patient-reported outcomes between these 2 procedures with an emphasis on the abdomen. Methods: Thirty-four patients reconstructed with a DIEAP flap (DIEAP group), and 30 patients with an AP (AP group) were asked to complete 2 study-specific questionnaires...
August 2018: Plastic and Reconstructive Surgery. Global Open
Carole Farrell, Catherine Heaven
PURPOSE: Chemotherapy poses challenges for older patients, with potential comorbidities, mobility and functional problems that may adversely affect their dignity. Patients may struggle with side-effects but fail to inform health professionals, impacting on clinical management and unresolved needs/concerns. This study aims to explore the impact of dignity during chemotherapy for older people and partners. METHODS: A qualitative study using semi-structured interviews of patients/partners following chemotherapy for non-metastatic cancer...
October 2018: European Journal of Oncology Nursing: the Official Journal of European Oncology Nursing Society
Maryam Sina, Freya MacMillan, Tinashe Dune, Navodya Balasuriya, Nouran Khouri, Ngan Nguyen, Vasyngpong Jongvisal, Xiang Hui Lay, David Simmons
BACKGROUND: Poor diabetes management prior to conception, results in increased rates of fetal malformations and other adverse pregnancy outcomes. We describe the development of an integrated, pre-pregnancy management strategy to improve pregnancy outcomes among women of reproductive age with diabetes in a multi-ethnic district. METHODS: The strategy included (i) a narrative literature review of contraception and pre-pregnancy interventions for women with diabetes and development of a draft plan; (ii) a chart review of pregnancy outcomes (e...
October 15, 2018: BMC Pregnancy and Childbirth
Mathew Leonardi, Helena Frecker, Ayden I Scheim, Sari Kives
Disparities exist in the area of reproductive health for lesbian, gay, bisexual (LGB) and transgender and gender non-conforming (TGNC) adolescents when compared to cisgender, heterosexual adolescents, particularly related to pregnancy and pregnancy risk factors. Review of the literature indicates an estimated increased risk of adolescent pregnancy involvement between two and 10 times higher for LGB youth compared to heterosexual youth. This may be explained by a broad spectrum of sexual health risks experienced, including an earlier age of sexual debut, exposure to sexual abuse, and a higher number of sexual partners...
October 11, 2018: Journal of Pediatric and Adolescent Gynecology
K Rivet Amico, Jessica Miller, Christopher Balthazar, Pedro Alonso Serrano, Jennifer Brothers, Sarah Zollweg, Sybil Hosek
Pre-exposure prophylaxis (PrEP) for the prevention of HIV infection among young men who have sex with men is a critical part of the HIV prevention landscape in the US. Given the unique challenges and resources of young MSM negotiating safer sex practices, including PrEP, counseling and supportive discussions to optimize both PrEP use and sexual health protection more generally may facilitate reaching HIV prevention goals. Within the context of a large, open-label PrEP study (ATN110/113), support for sexual health promotion and PrEP use was provided through use of integrated Next Step Counseling (iNSC) as part of study visits...
October 9, 2018: AIDS and Behavior
Doris M Rubio, Colleen A Mayowski, Marie K Norman
The biomedical workforce continues to lack diversity, despite growing evidence demonstrating the advantages of diverse teams in workplaces for creativity and innovation. At the University of Pittsburgh Institute for Clinical Research Education, we have taken a multi-pronged, collaborative approach to enhance the diversity of our trainees and scholars. We started by implementing a program for postdoctoral fellows and junior faculty, the Career Education and Enhancement for Health Care Research Diversity (CEED) program...
October 11, 2018: International Journal of Environmental Research and Public Health
Juliann M Savatt, Danielle R Azzariti, W Andrew Faucett, Steven Harrison, Jennifer Hart, Brandi Kattman, Melissa J Landrum, David H Ledbetter, Vanessa Rangel Miller, Emily Palen, Heidi L Rehm, Jud Rhode, Stefanie Turner, Jo Anne Vidal, Karen E Wain, Erin Rooney Riggs, Christa Lese Martin
GenomeConnect, the NIH-funded Clinical Genome Resource (ClinGen) patient registry, engages patients in data sharing to support the goal of creating a genomic knowledge base to inform clinical care and research. Participant self-reported health information and genomic variants from genetic testing reports are curated and shared with public databases, such as ClinVar. There are four primary benefits of GenomeConnect: (1) sharing novel genomic data-47.9% of variants were new to ClinVar, highlighting patients as a genomic data source; (2) contributing additional phenotypic information-of the 52...
November 2018: Human Mutation
Emily A Largent, Holly Fernandez Lynch, Matthew S McCoy
To ensure that the information resulting from research is relevant to patients, the Patient-Centered Outcomes Research Institute eschews the "traditional health research" paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged-and how should they be engaged? Second, which patients are being engaged-and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the "who" question is conceptually prior to the question of "how...
September 2018: Hastings Center Report
Jesse Lachter, Carly Rosenberg, Tomer Hananiya, Iyad Khamaysi, Amir Klein, Kamel Yassin, Elizabeth Half
OBJECTIVE OF THE WORK: Pancreatic cancer (PC) is a deadly disease that is most commonly diagnosed at an incurable stage. Early diagnosis is the most important factor for improving prognosis. Evidence is beginning to accumulate that screening and surveillance may lead to the early detection of precursor lesions and/or pancreatic cancer in asymptomatic individuals. Proper screening methods and identification of such precursor lesions may enable effective pre-emptive interventions to prevent further fatalities...
October 4, 2018: Rambam Maimonides Medical Journal
Soo Borson, Patrick Mobley, Karl Fernstrom, Paige Bingham, Tatiana Sadak, Heather R Britt
INTRODUCTION: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One's Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support...
2018: PloS One
Rosalind Boa, Seija Grénman
More people are living with the long-term effects of cancer owing to improvements in cancer treatments and an aging population. Many people diagnosed with cancer report a negative impact on sexual identity, sexual functioning, and their sexual relationship. Gynecologic cancer survivors are often the most severely affected. These cancers involve cancers of the ovaries, uterus, cervix, vagina, and vulva. The impact of these cancers on sexual health results not only from the disease process itself, but may also be due to the necessary treatments required...
October 2018: International Journal of Gynaecology and Obstetrics
Vivian F Go, Rebecca B Hershow, Tetiana Kiriazova, Riza Sarasvita, Quynh Bui, Carl A Latkin, Scott Rose, Erica Hamilton, Kathryn E Lancaster, David Metzger, Irving F Hoffman, William C Miller
HIV-infected people who inject drugs (PWID) have low uptake of HIV services, increasing the risk of transmission to uninfected injection or sexual partners and the likelihood of AIDS-related deaths. HPTN 074 is a vanguard study assessing the feasibility of an integrated intervention to facilitate treatment as prevention to PWID in Indonesia, Ukraine, and Vietnam. We describe barriers to and facilitators of ART uptake and adherence among PWID. We conducted in-depth interviews with 62 participants, including 25 providers and 37 PWID at baseline across all sites...
October 10, 2018: AIDS and Behavior
Michaela Karlstedt, Seyed-Mohammad Fereshtehnejad, Dag Aarsland, Johan Lökk
The relationship quality, mutuality, has been identified as a protective factor in family care situations, but its role in mediating health-related quality of life (HRQoL) in patients having Parkinson's disease (PD) is not known. Data on patients' and partners' mutuality (MS), motor signs (UPDRS III), non-motor symptoms (NMSQuest), impaired cognition (IQCODE), dependency in activities of daily life (ADL), and HRQoL (PDQ8) were collected from 51 dyads. Structural equation model with manifest variables was applied to explore if the MS score mediated the effect of UPDRS III, NMSQuest, IQCODE, and dependency in ADL on PDQ8...
2018: Parkinson's Disease
Karianne Oldertrøen Solli, Marjolein de Boer, Kari Nyheim Solbraekke, Lisbeth Thoresen
AIMS AND OBJECTIVES: This study aims to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. BACKGROUND: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce...
October 9, 2018: Journal of Clinical Nursing
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