Publications by authors named "Wiener L"

Importance: Short sleep duration during pregnancy and the perimenopausal period has been associated with adverse cardiometabolic outcomes. However, it remains unclear how sleep duration changes after delivery and whether such changes are associated with the cardiometabolic health of birthing people.

Objective: To investigate whether persistently short sleep during pregnancy and after delivery is associated with incident hypertension and metabolic syndrome.

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Importance: Little is known about the nature of change in goals of care (GOC) over time among adolescents and younger adult (AYA) patients aged 12 to 39 years with cancer near the end of life. Understanding how GOC evolve may guide clinicians in supporting AYA patients in making end-of-life decisions.

Objective: To assess frequency, timing, and evolution of documented GOC among AYA patients with cancer in the last 90 days of life.

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Incorporating and elevating the voices of patients and families is of utmost importance in pediatric psychosocial research. While recognized as a priority, this practice is not commonplace, and specific guidance regarding best practices and procedures is largely absent. This paper describes partnering equitably with pediatric oncology patient advocacy groups to conduct the Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study.

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Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. A structured interview was used alongside two versions of VMC to solicit AYA preferences and feedback regarding content and layout changes.

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Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK).

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Objectives: While caring for seriously ill children is a rewarding experience, pediatric healthcare providers may experience sadness and emotional distress when their patient dies. These feelings, particularly when not addressed, can lead to negative health and occupational outcomes. Remembrance practices can provide a safe space for staff to process their grief.

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Article Synopsis
  • Graft-versus-host disease (GVHD) is a common problem that can happen after certain medical treatments, causing serious physical and emotional issues for patients.
  • Even though there have been improvements in treating GVHD, the treatments can weaken the immune system and lead to more suffering and risks.
  • To help patients better, doctors are encouraged to work as a team and focus on both the physical and emotional challenges they face from GVHD, ensuring they get the best overall care.
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  • Youth with life-limiting conditions, like cancer, experience significant psychosocial challenges such as anxiety, depression, and pain, which can negatively impact long-term health outcomes.
  • The study involved 100 English-speaking pediatric outpatients aged 8-21 who completed a brief distress screener called Checking IN, alongside caregiver-proxy reports, to assess their psychosocial distress.
  • Results showed that both youth and caregivers identified fatigue, worry, and sleep difficulties as significant issues, highlighting the effectiveness of real-time assessments in improving psychosocial support and referral processes for distressed youth.
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Background: Chimeric antigen receptor (CAR) T-cell therapy provides promising outcomes in relapsed/refractory B acute lymphoblastic leukemia (ALL), yet still carries high toxicity rates and relatively poor long-term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment-related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied.

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We present the synthesis of two new novel tetradentate ligands based on 1,3,4-oxadiazole, 2-(2-pyridyl)-5-[,-bis(2-pyridylmethyl)aminomethyl]-1,3,4-oxadiazole (LTetraPy-ODA) and 2-(2-phenyl)-5-[,-bis(2-pyridylmethyl)aminomethyl]-1,3,4-oxadiazole (LTetraPh-ODA). The ligands were used to prepare six mononuclear complexes [Fe(LTetraPy-ODA)(NCE)] (C1-C3) and [Fe(LTetraPh-ODA)(NCE)] (C4-C6) where E = S, Se or BH. In addition, the ligand LTetraPy-ODA was employed in the synthesis of a new di-nuclear complex [FeII2(LTetraPh)](ClO)·1 CHNO·1.

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A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.

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Importance: The American Academy of Neurology Axon Registry® provides real-world data for patients with multiple sclerosis and neuro-myelitis optica. However, some data are incomplete (e.g.

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Article Synopsis
  • A study investigated how adolescents and young adults with cancer received different types of cancer treatments, such as chemotherapy, targeted therapy, and immunotherapy, in their last 90 days of life between 2009 and 2019.
  • Out of 1,836 patients, 35% received chemotherapy, while 24% got targeted therapy, 7% immunotherapy, and 5% investigational drugs, showing a trend toward increased use of these therapies over time.
  • Over 50% of the patients received at least one form of systemic cancer-directed therapy in their last three months, highlighting the need to align treatment decisions with the patients' preferences during advanced illness.
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Article Synopsis
  • Chronic graft-versus-host disease (cGVHD) is a serious condition that can happen after kids receive stem cell transplants, and it involves a lot of uncomfortable symptoms.
  • This study aims to create a special questionnaire called the pediatric cGVHD Symptom Scale (PCSS) that will help understand how these kids and their caregivers feel about the symptoms.
  • The study will involve interviews with children and their caregivers to make sure the questions are clear and will later test how well the scale works for measuring the symptoms in kids ages 5-17.
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Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers.

Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC).

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Background: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population.

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Article Synopsis
  • Researchers use patient-reported outcomes (PRO) to gauge patient experiences, with parents often reporting on their child's symptoms and functions in pediatric oncology.
  • Differences between how children with cancer and their caregivers assess symptoms and function can create concerns for clinicians about how to address these discrepancies with families.
  • The paper provides strategies and communication techniques for clinicians to effectively discuss the disagreement in PRO reporting to enhance family support and cohesion during the child's illness.
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Adolescents, young adults with cancer receive limited psychosocial and spiritual support near death.

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Background/objective: The use of patient-reported outcomes (PRO) is increasing in pediatric clinical practice and research, including in clinical trials. Treatment teams are now able to discern differences in symptom and function reports between children with cancer and their family caregivers. Few studies, however, have quantified such differences.

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Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population.

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Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations.

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Purpose: Adolescents and young adults (AYAs) with cancer receive high rates of medically intensive measures at the end of life. This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among AYAs at the end of life as one potential influence on care received.

Methods: This was a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving care at one of three sites between 2003 and 2019, including documented conversations about goals of care and advance care planning, and care received.

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