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1.
J Gen Intern Med ; 37(6): 1501-1512, 2022 05.
Article in English | MEDLINE | ID: mdl-35239110

ABSTRACT

BACKGROUND: Current pain management recommendations emphasize leveraging interdisciplinary teams. We aimed to identify key features of interdisciplinary team structures and processes associated with improved pain outcomes for patients experiencing chronic pain in primary care settings. METHODS: We searched PubMed, EMBASE, and CINAHL for randomized studies published after 2009. Included studies had to report patient-reported pain outcomes (e.g., BPI total pain, GCPS pain intensity, RMDQ pain-related disability), include primary care as an intervention setting, and demonstrate some evidence of teamwork or teaming; specifically, they needed to involve at least two clinicians interacting with each other and with patients in an ongoing process over at least two timepoints. We assessed study quality with the Cochrane Risk of Bias tool. We narratively synthesized intervention team structures and processes, comparing among interventions that reported a clinically meaningful improvement in patient-reported pain outcomes defined by the minimal clinically important difference (MCID). RESULTS: We included 13 total interventions in our review, of which eight reported a clinically meaningful improvement in at least one patient-reported pain outcome. No included studies had an overall high risk of bias. We identified the role of a care manager as a common structural feature of the interventions with some clinical effect on patient-reported pain. The team processes involving clinicians varied across interventions reporting clinically improved pain outcomes. However, when analyzing team processes involving patients, six of the interventions with some clinical effect on pain relied on pre-scheduled phone calls for continuous patient follow-up. DISCUSSION: Our review suggests that interdisciplinary interventions incorporating teamwork and teaming can improve patient-reported pain outcomes in comparison to usual care. Given the current evidence, future interventions might prioritize care managers and mechanisms for patient follow-up to help bridge the gap between clinical guidelines and the implementation of interdisciplinary, team-based chronic pain care.


Subject(s)
Chronic Pain , Pain Management , Bias , Chronic Pain/therapy , Humans , Primary Health Care , Randomized Controlled Trials as Topic
2.
Neurosurg Focus ; 46(6): E12, 2019 06 01.
Article in English | MEDLINE | ID: mdl-31153145

ABSTRACT

OBJECTIVEAdjuvant radiotherapy has become a common addition to the management of high-grade meningiomas, as immediate treatment with radiation following resection has been associated with significantly improved outcomes. Recent investigations into particle therapy have expanded into the management of high-risk meningiomas. Here, the authors systematically review studies on the efficacy and utility of particle-based radiotherapy in the management of high-grade meningioma.METHODSA literature search was developed by first defining the population, intervention, comparison, outcomes, and study design (PICOS). A search strategy was designed for each of three electronic databases: PubMed, Embase, and Scopus. Data extraction was conducted in accordance with the PRISMA guidelines. Outcomes of interest included local disease control, overall survival, and toxicity, which were compared with historical data on photon-based therapies.RESULTSEleven retrospective studies including 240 patients with atypical (WHO grade II) and anaplastic (WHO grade III) meningioma undergoing particle radiation therapy were identified. Five of the 11 studies included in this systematic review focused specifically on WHO grade II and III meningiomas; the others also included WHO grade I meningioma. Across all of the studies, the median follow-up ranged from 6 to 145 months. Local control rates for high-grade meningiomas ranged from 46.7% to 86% by the last follow-up or at 5 years. Overall survival rates ranged from 0% to 100% with better prognoses for atypical than for malignant meningiomas. Radiation necrosis was the most common adverse effect of treatment, occurring in 3.9% of specified cases.CONCLUSIONSDespite the lack of randomized prospective trials, this review of existing retrospective studies suggests that particle therapy, whether an adjuvant or a stand-alone treatment, confers survival benefit with a relatively low risk for severe treatment-derived toxicity compared to standard photon-based therapy. However, additional controlled studies are needed.


Subject(s)
Carbon/therapeutic use , Cranial Irradiation , Meningeal Neoplasms/radiotherapy , Meningioma/radiotherapy , Photons/therapeutic use , Proton Therapy , Radiotherapy, Adjuvant/methods , Alopecia/etiology , Brain/radiation effects , Cations/therapeutic use , Combined Modality Therapy , Cost-Benefit Analysis , Cranial Irradiation/adverse effects , Cranial Irradiation/economics , Craniotomy , Follow-Up Studies , Humans , Meningeal Neoplasms/pathology , Meningeal Neoplasms/surgery , Meningioma/pathology , Meningioma/surgery , Necrosis , Prognosis , Proton Therapy/adverse effects , Proton Therapy/economics , Radiation Injuries/etiology , Radiation Injuries/therapy , Radiotherapy, Adjuvant/adverse effects , Radiotherapy, Adjuvant/economics , Retrospective Studies , Seizures/etiology
3.
J Pain Symptom Manage ; 67(1): e70-e89, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37797678

ABSTRACT

CONTEXT: Despite the expansion of palliative care (PC) services, the public has little knowledge and holds misperceptions about PC, creating barriers to accessing timely specialty PC. OBJECTIVES: To systematically review the evidence regarding the efficacy of educational interventions to improve knowledge and attitudes about PC among nonhealthcare workers. METHODS: We searched five databases (PubMed/MEDLINE, Embase, CIANHL, Web of Science, and Scopus) for studies investigating educational interventions about specialty PC in adults who identified as patients, caregivers, or members of the public. We included studies that were available in English and had a comparator group. We excluded studies that only sampled health professionals or children. We used the Mixed Methods Appraisal Tool to assess quality and risk of bias. RESULTS: Of 12,420 records identified, we screened 5948 abstracts and assessed 526 full texts for eligibility. Twenty-one articles were extracted for analysis, representing 20 unique educational interventions. Common methodologies included quasi-experimental (9, 45%), randomized controlled trial (4, 20%), and nonrandomized trial (2, 10%). Common components of the educational interventions included video presentations (9, 45%), written materials (8, 40%), and lectures (4, 20%). Content included definition (14, 70%) and philosophy (14, 70%) of PC, distinctions between PC and hospice (11, 55%), and eligibility for PC (11, 55%). Fourteen (70%) interventions showed statistically significant positive differences in either knowledge or attitudes about PC. CONCLUSIONS: While educational interventions can positively impact knowledge and attitudes about PC among nonhealthcare workers, more research is needed to inform the design, delivery, and evaluation of interventions to increase knowledge and attitudes about PC.


Subject(s)
Caregivers , Hospice Care , Palliative Care , Humans , Caregivers/education
4.
Acad Pediatr ; 24(2): 216-227, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37659602

ABSTRACT

Systemic racism embedded within the US health care system results in disproportionately worse health outcomes for Black pediatric patients and their caregivers. One meaningful mechanism through which these health disparities persist is through discriminatory treatment and anti-Black bias from clinicians. Strengthening care provided to Black pediatric patients and their caregivers requires that clinicians adopt culturally tailored communication strategies that promote health equity and counter racism. We conducted a scoping review of evidence-based communication practices in the medical literature that improve care for Black pediatric patients. We mapped the specific practices to the Presence 5 for Racial Justice framework and identified cross-cutting themes to describe practices across the five domains. There are three cross-cutting themes that underlie the recommended practices: 1) promote unbiased implementation of clinician communication strategies (eg, providing equitable recommendations for preventive care), 2) tailor care to Black pediatric patients (eg, explore the importance of the family unit), and 3) address racism experienced by Black pediatric patients and their caregivers (eg, acknowledge any previous negative experiences with the health care system). This review highlights communication practices that clinicians can adopt to build trusting relationships, empower Black families, and promote racial justice in clinical care. Future opportunities include expanding to system level change and validating these practices with patients and clinicians.


Subject(s)
Caregivers , Racism , Humans , Child , Trust , Health Promotion , Black People , Delivery of Health Care
5.
Acad Emerg Med ; 2024 May 23.
Article in English | MEDLINE | ID: mdl-38779704

ABSTRACT

OBJECTIVES: Precision medicine is data-driven health care tailored to individual patients based on their unique attributes, including biologic profiles, disease expressions, local environments, and socioeconomic conditions. Emergency medicine (EM) has been peripheral to the precision medicine discourse, lacking both a unified definition of precision medicine and a clear research agenda. We convened a national consensus conference to build a shared mental model and develop a research agenda for precision EM. METHODS: We held a conference to (1) define precision EM, (2) develop an evidence-based research agenda, and (3) identify educational gaps for current and future EM clinicians. Nine preconference workgroups (biomedical ethics, data science, health professions education, health care delivery and access, informatics, omics, population health, sex and gender, and technology and digital tools), comprising 84 individuals, garnered expert opinion, reviewed relevant literature, engaged with patients, and developed key research questions. During the conference, each workgroup shared how they defined precision EM within their domain, presented relevant conceptual frameworks, and engaged a broad set of stakeholders to refine precision EM research questions using a multistage consensus-building process. RESULTS: A total of 217 individuals participated in this initiative, of whom 115 were conference-day attendees. Consensus-building activities yielded a definition of precision EM and key research questions that comprised a new 10-year precision EM research agenda. The consensus process revealed three themes: (1) preeminence of data, (2) interconnectedness of research questions across domains, and (3) promises and pitfalls of advances in health technology and data science/artificial intelligence. The Health Professions Education Workgroup identified educational gaps in precision EM and discussed a training roadmap for the specialty. CONCLUSIONS: A research agenda for precision EM, developed with extensive stakeholder input, recognizes the potential and challenges of precision EM. Comprehensive clinician training in this field is essential to advance EM in this domain.

6.
PLoS One ; 18(11): e0294599, 2023.
Article in English | MEDLINE | ID: mdl-37983229

ABSTRACT

INTRODUCTION: Interdisciplinary teams are often leveraged to improve quality of cancer care in the perioperative period. We aimed to identify the team structures and processes in interdisciplinary interventions that improve perioperative patient-reported outcomes for patients with cancer. METHODS: We searched PubMed, EMBASE, and CINAHL for randomized control trials published at any time and screened 7,195 articles. To be included in our review, studies needed to report patient-reported outcomes, have interventions that occur in the perioperative period, include surgical cancer treatment, and include at least one non physician intervention clinical team member: advanced practice providers, including nurse practitioners and physician assistants, clinical nurse specialists, and registered nurses. We narratively synthesized intervention components, specifically roles assumed by intervention clinical team members and interdisciplinary team processes, to compare interventions that improved patient-reported outcomes, based on minimal clinically important difference and statistical significance. RESULTS: We included 34 studies with a total of 4,722 participants, of which 31 reported a clinically meaningful improvement in at least one patient-reported outcome. No included studies had an overall high risk of bias. The common clinical team member roles featured patient education regarding diagnosis, treatment, coping, and pain/symptom management as well as postoperative follow up regarding problems after surgery, resource dissemination, and care planning. Other intervention components included six or more months of continuous clinical team member contact with the patient and involvement of the patient's caregiver. CONCLUSIONS: Future interventions might prioritize supporting clinical team members roles to include patient education, caregiver engagement, and clinical follow-up.


Subject(s)
Neoplasms , Humans , Adaptation, Psychological , Caregivers , Neoplasms/surgery , Pain Management , Perioperative Care , Postoperative Complications , Randomized Controlled Trials as Topic
7.
J Palliat Med ; 25(3): 488-505, 2022 03.
Article in English | MEDLINE | ID: mdl-34847736

ABSTRACT

Context: Huntington's disease (HD) is a neurodegenerative disorder characterized by mid-life onset, cognitive decline, and behavioral disturbance. Objective: We conducted a review of the end-of-life (EOL) experience of HD patients and their families. Methods: We searched 5 electronic databases. Eligible studies were published in English and contained outcomes related to PC, end-of-life (EOL), advance directives (ADs), symptom management, or hospice use for HD adults. Results: We screened 1566 studies, assessed 244 studies, and included 27 studies. Symptom Prevalence: Decedent data showed greater likelihood of pneumonia, choking, nutritional deficiencies, and skin ulcers. HD patients in hospice experienced pain, anxiety, nausea, and dyspnea. Psychiatric symptoms included dysphoria, agitation, irritability, apathy, and anxiety. Psychosis is associated with worse cognition, function, and behavioral disturbance. Symptom Management: Electroconvulsive therapy (ECT) and venlafaxine improved depression. Suicidal ideation improved with talking, self-management, medication, and discussing EOL wishes. Tetrabenazine improved chorea. Experience as Illness Progressed: HD patients require home care within two years of diagnosis. Only one study reported use of palliative care services (4%). HD patients are admitted to the hospital late in disease course and are often discharged to long-term care facilities (LTCF). Advance Care Planning: Two studies created tools to navigate EOL decisions. Most HD patients had EOL wishes; only familiarity with HD predicted having EOL wishes. Few had ADs or discussed EOL wishes with their families. Clinicians drive EOL discussions. Views on physician-assisted death (PAD) and euthanasia varied widely. Conclusions: Research is needed to further assess the PC needs of HD patients and to provide care recommendations.


Subject(s)
Advance Care Planning , Hospice Care , Huntington Disease , Terminal Care , Adult , Humans , Huntington Disease/psychology , Huntington Disease/therapy , Palliative Care
8.
J Cancer Surviv ; 2022 May 23.
Article in English | MEDLINE | ID: mdl-35599269

ABSTRACT

PURPOSE: Patient-reported outcome measurements (PROMs) are increasingly used for cancer patients receiving active treatment, but little is known about the implementation and usefulness of PROMs in cancer survivorship care. This systematic review evaluates how cancer survivors and healthcare providers (HCPs) perceive PROM implementation in survivorship care, and how PROM implementation impacts cancer survivors' health outcomes. METHODS: We systematically searched PubMed/MEDLINE, Embase, CINAHL, Web of Science, and Cochrane Database of Systematic Reviews from database inception to February 2022 to identify randomized and nonrandomized studies of PROM implementation in cancer survivors. RESULTS: Based on prespecified eligibility criteria, we included 29 studies that reported on 26 unique PROMs. The studies were heterogeneous in study design, PROM instrument, patient demographics, and outcomes. Several studies found that cancer survivors and HCPs had favorable impressions of the utility of PROMs, and a few studies demonstrated that PROM implementation led to improvements in patient quality of life (QoL), with small to moderate effect sizes. CONCLUSIONS: We found implementation of PROMs in cancer survivorship care improved health outcomes for select patient populations. Future research is needed to assess the real-world utility of PROM integration into clinical workflows and the impact of PROMs on measurable health outcomes. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors accepted PROMs. When successfully implemented, PROMs can improve health outcomes after completion of active treatment. We identify multiple avenues to strengthen PROM implementation to support cancer survivors.

9.
J Orthop Trauma ; 36(1): 1-6, 2022 Jan 01.
Article in English | MEDLINE | ID: mdl-34001801

ABSTRACT

OBJECTIVE: To compare complications and functional outcomes of treatment with primary distal femoral replacement (DFR) versus open reduction and internal fixation (ORIF). DATA SOURCES: PubMed, Embase, and Cochrane databases were searched for English language studies up to May 19, 2020, identifying 913 studies. STUDY SELECTION: Studies that assessed complications of periprosthetic distal femur fractures with primary DFR or ORIF were included. Studies with sample size ≤5, mean age <55, nontraumatic indications for DFR, ORIF with nonlocking plates, native distal femoral fractures, or revision surgeries were excluded. Selection adhered to the PRISMA criteria. DATA EXTRACTION: Study quality was assessed using previously reported criteria. There were 40 Level IV studies, 17 Level III studies, and 1 Level II study. DATA SYNTHESIS: Fifty-eight studies with 1484 patients were included in the meta-analysis. Complications assessed {incidence rate ratio [IRR] [95% confidence interval (CI)]: 0.78 [0.59-1.03]} and reoperation or revision [IRR (95% CI): 0.71 (0.49-1.04)] were similar between the DFR and ORIF cohorts. The mean knee range of motion was greater in the ORIF cohort (DFR: 90.47 vs. ORIF: 100.36, P < 0.05). The mean Knee Society Score (KSS) (DFR: 79.41 vs. ORIF: 82.07, P = 0.35) and return to preoperative ambulatory status were similar [IRR (95% CI): 0.82 (0.48-1.41)]. CONCLUSIONS: In comparing complications among patients treated for periprosthetic distal femur fracture with DFR or ORIF, there was no difference between the groups. There were also no differences in functional outcomes, although knee range of motion was greater in the ORIF group. This systematic review and meta-analysis highlights the need for future prospective trials evaluating the outcomes of these divergent treatment strategies. LEVEL OF EVIDENCE: Therapeutic Level III. See Instructions for Authors for a complete description of levels of evidence.


Subject(s)
Femoral Fractures , Periprosthetic Fractures , Femoral Fractures/surgery , Femur , Fracture Fixation, Internal/adverse effects , Humans , Open Fracture Reduction/adverse effects , Periprosthetic Fractures/surgery , Reoperation , Retrospective Studies , Treatment Outcome
10.
Patient Educ Couns ; 104(12): 2900-2911, 2021 12.
Article in English | MEDLINE | ID: mdl-34030929

ABSTRACT

OBJECTIVES: A systematic review to analyze communication rates of complementary and integrative health (CIH) and analyze how communication terms, such as "disclosure," are measured and operationalized. METHODS: We searched seven databases for studies published between 2010 and 2018 with quantitative measurements of patients' communication of CIH to a biomedical clinician. We analyzed communication terms used to describe patients reporting CIH usage. We also examined the conceptual and operational definitions of CIH provided and whether those terms were explicitly operationalized. We aggregated the percentage, rate, or ratio of CIH users that communicated about CIH with their clinicians by disease type and geographical region. RESULTS: 7882 studies were screened and 89 included in the review. Studies used a wide range of conceptual and operational definitions for CIH, as well as 23 different terms to report communication related to reporting CIH usage. Usage varied by disease type and geographical region. CONCLUSIONS: Studies of CIH and CIH communication may measure different kinds of social and communicative phenomena, which makes comparison across international studies challenging. PRACTICE IMPLICATIONS: Future studies should employ standardized, replicable measures for defining CIH and for reporting CIH communication. Clinicians can incorporate questions about prior, current, and future CIH use during the medical visit.


Subject(s)
Complementary Therapies , Integrative Medicine , Communication , Delivery of Health Care , Humans
11.
J Pain Symptom Manage ; 61(5): 1060-1079.e2, 2021 05.
Article in English | MEDLINE | ID: mdl-33348034

ABSTRACT

CONTEXT: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. OBJECTIVE: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. METHODS: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. RESULTS: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. CONCLUSION: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.


Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Terminal Care , Child , Humans , Neoplasms/therapy , Palliative Care , Quality of Life
12.
J Pain Symptom Manage ; 59(4): 916-931.e1, 2020 04.
Article in English | MEDLINE | ID: mdl-31775021

ABSTRACT

CONTEXT: Patients with significant burn injuries likely have palliative care needs. OBJECTIVES: We performed a systematic review of existing evidence concerning the palliative care needs of burn patients. METHODS: Through November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains. RESULTS: Our searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains-processes of care, psychologic symptoms, social aspects, and end of life-were addressed by studies but three domains-spiritual, cultural, or ethics-were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments. CONCLUSION: Most existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.


Subject(s)
Burns , Hospice and Palliative Care Nursing , Burns/therapy , Humans , Palliative Care , Quality of Health Care , Quality of Life
13.
J Pain Symptom Manage ; 59(2): 372-383.e1, 2020 02.
Article in English | MEDLINE | ID: mdl-31586580

ABSTRACT

CONTEXT: There is growing interest in providing palliative care (PC) in the emergency department (ED), but relatively little is known about the efficacy of ED-based PC interventions. A 2016 systematic review on this topic found no evidence that ED-based PC interventions affect patient outcomes or health care utilization, but new research has emerged since the publication of that review. OBJECTIVES: This systematic review provides a concise summary of current literature addressing the impact of ED-based PC interventions on patient-reported or family reported outcomes, health care utilization, and survival. METHODS: We searched PubMed, Embase, Web of Science, Scopus, and the Cumulative Index to Nursing and Allied Health Literature from inception until September 1, 2018 and reviewed references. Eligible articles evaluated the effects of PC interventions in the ED on patient-reported or family reported outcomes, health care utilization, or survival. RESULTS: We screened 3091 abstracts and 98 full-text articles with 13 articles selected for final inclusion. Two articles reported the results of a single randomized controlled trial, whereas the remaining 11 studies were descriptive or quasi-experimental cohort studies. More than half of the included articles were published after the previous systematic review on this topic. Populations studied included older adults, patients with advanced malignancy, and ED patients screening positive for unmet PC needs. Most interventions involved referral to hospice or PC or PC provided directly in the ED. Compared with usual care, ED-PC interventions improved quality of life, although this improvement was not observed when comparing ED-PC to inpatient PC. ED-PC interventions expedited PC consultation; most studies reported a concomitant reduction in hospital length of stay and increase in hospice utilization, but some data were conflicting. Short-term mortality rates were high across all studies, but ED-PC interventions did not decrease survival time compared with usual care. CONCLUSION: Existing data support that PC in the ED is feasible, may improve quality of life, and does not appear to affect survival.


Subject(s)
Palliative Care , Terminal Care , Aged , Emergency Service, Hospital , Humans , Quality of Life , Randomized Controlled Trials as Topic , Referral and Consultation
14.
J Pain Symptom Manage ; 58(5): 891-898, 2019 11.
Article in English | MEDLINE | ID: mdl-31404639

ABSTRACT

CONTEXT: Little is known about advance care planning (ACP) and palliative care needs among adults with congenital heart disease (ACHD). OBJECTIVES: The objective of this study was to identify and synthesize studies concerning palliative care among ACHD patients. METHODS: We searched five electronic databases (PubMed, Embase, SCOPUS, Web of Science, and CINAHL) using the keywords palliative care and congenital heart disease. Inclusion criteria were adults (age > 18 years) with congenital heart disease and publications in English through March 3, 2019. RESULTS: Our search yielded 2872 studies, and after removal of duplicates, we screened 2319 abstracts and identified seven for inclusion. Study findings were grouped into three domains: ACP, symptomatology, and end-of-life care. Among the five cross-sectional studies, only 1%-28% of ACHD patients recalled participating in ACP discussions with their doctors but 69%-78% reported a strong interest and desire to participate in ACP. In one study, 46% (n = 67) of patients had elevated anxiety symptoms (Hospital Anxiety and Depression Scale [HADS-A] ≥ 8) and 11% (n = 15) had elevated depressive symptoms (HADS-A ≥ 8). ACHD patients who had a documented goals of care conversation before cardiac decompensation had a lower incidence of resuscitation and aggressive treatments at end of life (12% [n = 3] vs. 100% [n = 12], P < 0.001). CONCLUSION: While few ACHD patients complete advance directives, our findings support that many ACHD patients recognize the value of initiating end-of-life and goals of care conversations early on in the course of illness. Future studies investigating communication and implementation strategies of ACP as well as the symptom experience of patients with ACHD are needed.


Subject(s)
Advance Care Planning , Advance Directives , Heart Defects, Congenital , Palliative Care , Terminal Care , Databases, Factual , Humans
15.
J Pain Symptom Manage ; 58(1): 137-156.e1, 2019 Jul.
Article in English | MEDLINE | ID: mdl-30905677

ABSTRACT

CONTEXT: Immune checkpoint inhibitors (ICIs) are increasingly used to treat a variety of cancers, but comparatively little is known about patient-reported outcomes (PROs) and health-related quality of life (HRQoL) among patients receiving these novel therapies. OBJECTIVES: We performed a systematic review to examine PROs and HRQoL among cancer patients receiving ICIs as compared to other anticancer therapies. METHODS: We systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using search terms representing ICIs, PROs, and HRQoL on August 10, 2018. Eligible articles were required to involve cancer patients treated with ICIs and to report PROs and/or HRQoL data. RESULTS: We screened 1453 references and included 15 publications representing 15 randomized controlled trials in our analysis. Studies included several cancer types (melanoma, lung cancer, genitourinary cancer, and head/neck cancer), used four different ICIs (nivolumab, pembrolizumab, atezolizumab, and ipilimumab), and compared ICIs to a wide range of therapies (chemotherapy, targeted therapies, other immunotherapy strategies, and placebo). Studies used a total of seven different PROs to measure HRQOL, most commonly the European Organisation for the Research and Treatment of Cancer core quality of life questionnaire (EORTC QLQ-C30) (n = 12, 80%). PRO data were reported in a variety of formats and at a variety of time points throughout treatment, which made direct comparison challenging. Some trials (n = 11, 73%) reported PROs on specific symptoms. In general, patients receiving ICIs had similar-to-improved HRQoL and experiences when compared to other therapies. CONCLUSION: Despite the broad clinical trials experience of ICI therapies across cancer types, relatively few randomized studies reported PROs and patient HRQoL data. Available data suggest that ICIs are well tolerated in terms of HRQoL compared to other anticancer therapies although the conclusions are limited by the heterogeneity of trial designs and outcomes. Currently used instruments may fail to capture important symptomatology unique to ICIs, underscoring a need for PROs designed specifically for ICIs.


Subject(s)
Antineoplastic Agents, Immunological/therapeutic use , Neoplasms/drug therapy , Palliative Care , Quality of Life , Humans , Patient Reported Outcome Measures
16.
Environ Health Perspect ; 115(2): 267-71, 2007 Feb.
Article in English | MEDLINE | ID: mdl-17384776

ABSTRACT

OBJECTIVES: Chlorination destroys pathogens in swimming pool water, but by-products of chlorination can cause human illness. We investigated outbreaks of ocular and respiratory symptoms associated with chlorinated indoor swimming pools at two hotels. MEASUREMENTS: We interviewed registered guests and companions who stayed at hotels X and Y within 2 days of outbreak onset. We performed bivariate and stratified analyses, calculated relative risks (RR), and conducted environmental investigations of indoor pool areas. RESULTS: Of 77 guests at hotel X, 47 (61%) completed questionnaires. Among persons exposed to the indoor pool area, 22 (71%) of 31 developed ocular symptoms [RR = 24; 95% confidence interval (CI), 1.5-370], and 14 (45%) developed respiratory symptoms (RR = 6.8; 95% CI, 1.0-47) with a median duration of 10 hr (0.25-24 hr). We interviewed 30 (39%) of 77 registered persons and 59 unregistered companions at hotel Y. Among persons exposed to the indoor pool area, 41 (59%) of 69 developed ocular symptoms (RR = 24; 95% CI, 1.5-370), and 28 (41%) developed respiratory symptoms (RR = 17; 95% CI, 1.1-260) with a median duration of 2.5 hr (2 min-14 days). Four persons sought medical care. During the outbreak, the hotel X's ventilation system malfunctioned. Appropriate water and air samples were not available for laboratory analysis. CONCLUSIONS AND RELEVANCE TO PROFESSIONAL PRACTICE: Indoor pool areas were associated with illness in these outbreaks. A large proportion of bathers were affected; symptoms were consistent with chloramine exposure and were sometimes severe. Improved staff training, pool maintenance, and pool area ventilation could prevent future outbreaks.


Subject(s)
Chloramines/toxicity , Disease Outbreaks , Environmental Exposure , Eye Diseases/epidemiology , Respiration Disorders/epidemiology , Swimming Pools , Adolescent , Adult , Child , Child, Preschool , Chloramines/analysis , Cohort Studies , Disease Outbreaks/prevention & control , Environmental Exposure/prevention & control , Eye Diseases/etiology , Eye Diseases/prevention & control , Female , Humans , Male , Middle Aged , Respiration Disorders/etiology , Respiration Disorders/prevention & control , Risk Factors , Water Microbiology , Water Pollutants, Chemical/analysis , Water Pollutants, Chemical/toxicity
17.
Vet Microbiol ; 120(1-2): 1-8, 2007 Feb 25.
Article in English | MEDLINE | ID: mdl-17208394

ABSTRACT

Otarine Herpesvirus-1 (OtHV-1) is a gammaherpesvirus routinely detected in urogenital tumor tissues of adult sea lions dying during rehabilitation, To investigate the epidemiology of this virus and guide the development of a mathematical model of its role in the multifactorial etiology of cancer in California sea lions, polymerase chain reaction (PCR) amplification of an OtHV-1 specific fragment of the DNA polymerase gene was used to look for evidence of OtHV-1 infection in urogenital and pharyngeal swabs and peripheral blood mononuclear cells (PBMC) of sea lions of different ages. Samples were also examined from pregnant females and their late term in utero or aborted fetuses to investigate potential for vertical transmission. Prevalence of infection in 72 adult females was 22%, whereas it was 46% in 52 adult males, and was significantly lower in 120 juvenile animals (6%). OtHV-1 DNA was most often detected in the lower reproductive tract of the adult animals, especially the males, and rarely in the pharynx or urogenital tract of juvenile animals. These data suggest sexual transmission may an important route of transmission. Additional studies are required to confirm this mode of transmission. Additionally, the virus was detected in a single prematurely born pup, suggesting the possibility of perinatal transmission. No indication of a PBMC associated viremia was evident in adults using standard PCR or in juveniles using standard and real time PCR.


Subject(s)
Herpesviridae Infections/veterinary , Herpesviridae/physiology , Sea Lions/virology , Sexually Transmitted Diseases, Viral/veterinary , Age Distribution , Animals , California/epidemiology , Female , Herpesviridae/genetics , Herpesviridae/isolation & purification , Herpesviridae Infections/epidemiology , Herpesviridae Infections/transmission , Leukocytes, Mononuclear/virology , Male , Pharynx/virology , Prevalence , Sexually Transmitted Diseases, Viral/epidemiology , Sexually Transmitted Diseases, Viral/transmission , Urogenital System/virology
18.
PLoS One ; 7(9): e43994, 2012.
Article in English | MEDLINE | ID: mdl-22970155

ABSTRACT

BACKGROUND: Ethnic variations in breast cancer epidemiology and genetics have necessitated investigation of the spectra of BRCA1 and BRCA2 mutations in different populations. Knowledge of BRCA mutations in Chinese populations is still largely unknown. We conducted a multi-center study to characterize the spectra of BRCA mutations in Chinese breast and ovarian cancer patients from Southern China. METHODOLOGY/PRINCIPAL FINDINGS: A total of 651 clinically high-risk breast and/or ovarian cancer patients were recruited from the Hong Kong Hereditary Breast Cancer Family Registry from 2007 to 2011. Comprehensive BRCA1 and BRCA2 mutation screening was performed using bi-directional sequencing of all coding exons of BRCA1 and BRCA2. Sequencing results were confirmed by in-house developed full high resolution DNA melting (HRM) analysis. Among the 451 probands analyzed, 69 (15.3%) deleterious BRCA mutations were identified, comprising 29 in BRCA1 and 40 in BRCA2. The four recurrent BRCA1 mutations (c.470_471delCT, c.3342_3345delAGAA, c.5406+1_5406+3delGTA and c.981_982delAT) accounted for 34.5% (10/29) of all BRCA1 mutations in this cohort. The four recurrent BRCA2 mutations (c.2808_2811delACAA, c.3109C>T, c.7436_7805del370 and c.9097_9098insA) accounted for 40% (16/40) of all BRCA2 mutations. Haplotype analysis was performed to confirm 1 BRCA1 and 3 BRCA2 mutations are putative founder mutations. Rapid HRM mutation screening for a panel of the founder mutations were developed and validated. CONCLUSION: In this study, our findings suggest that BRCA mutations account for a substantial proportion of hereditary breast/ovarian cancer in Southern Chinese population. Knowing the spectrum and frequency of the founder mutations in this population will assist in the development of a cost-effective rapid screening assay, which in turn facilitates genetic counseling and testing for the purpose of cancer risk assessment.


Subject(s)
Asian People/genetics , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Breast Neoplasms/genetics , Founder Effect , Mutation/genetics , Sequence Analysis, DNA/methods , Adolescent , Adult , Aged , Aged, 80 and over , Breast Neoplasms/diagnosis , Case-Control Studies , China , DNA Mutational Analysis , Female , Genetic Predisposition to Disease , Haplotypes/genetics , Humans , Male , Middle Aged , Nucleic Acid Denaturation/genetics , Reproducibility of Results , Young Adult
19.
Sex Transm Dis ; 35(4): 406-13, 2008 Apr.
Article in English | MEDLINE | ID: mdl-18362864

ABSTRACT

OBJECTIVES: This study investigated the prevalence of bisexual behaviors and marital status among Chinese men who have sex with men (MSM) and the associations between MSM's condom use and their heterosexual behaviors. METHODOLOGY: Eight hundred ninety-six adult males in Yunnan Province, China, who reported to ever have engaged in MSM behaviors were interviewed. Data were acquired through the China-UK HIV/AIDS Prevention and Care Project from 2003 to 2006. RESULTS: Of all respondents, one-third had ever been married, 59% had ever engaged in bisexual behaviors, and 31% had done so in the past 6 months. High prevalence of inconsistent condom use was reported in heterosexual behaviors (71.9%), as well as with those who had engaged in MSM sexual behaviors in the past 6 months (30.8% with commercial sex workers and 54.7% with noncommercial sex partners) in the past 6 months. Those who did not use condoms with MSM partners were also more likely than others to not use condoms with their female sex partners (FSP). Those who had voluntary counseling and testing services were more likely than others to have used a condom in the last episode of sex with their FSP (multivariate odds ratio = 1.66). CONCLUSIONS: The clustering of unprotected sexual behaviors with male and FSP among bisexual MSM is revealed. The bridging effects of the risk for human immunodeficiency virus transmission from the MSM population to the female population are evident.


Subject(s)
Bisexuality/statistics & numerical data , Condoms/statistics & numerical data , Heterosexuality/statistics & numerical data , Homosexuality, Male , Adolescent , Adult , Aged , China , Female , Humans , Interviews as Topic , Male , Marital Status , Middle Aged , Multivariate Analysis , Prevalence , Sexual Behavior , Sexual Partners
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