Exploring the diagnostic journey and life impact of patients with cholangiocarcinoma (CCA): Results from a large patient survey in the United States.

2021 ◽  
Vol 39 (3_suppl) ◽  
pp. 277-277
Author(s):  
Kristen Bibeau ◽  
Melinda Bachini ◽  
Anouk Lindley ◽  
Natalie Marie Barkey ◽  
Stacie Lindsey

277 Background: Patients (pts) with CCA typically present with advanced disease and face a poor prognosis and impaired quality of life (QoL). Despite improvements in therapies, the impact of CCA on pts’ daily lives has been rarely studied. This pt-focused survey explored the diagnostic journey, life impact including work status, QoL and psychosocial impacts of CCA. Methods: Pts with CCA were recruited in partnership with the Cholangiocarcinoma Foundation from Aug 23 through Sept 20, 2019, and were categorized by AJCC stage. Pts participated in a 30-min online survey to assess disease staging, symptoms, demographics, diagnosis journey, daily life impact, mental health, and sexual function. The survey included the validated disease specific European Organization for Research and Treatment of Cancer (EORTC) QLQ-BIL21, the Patient Health Questionnaire-9 (PHQ-9), and the Work Productivity and Activity Impairment (WPAI) questionnaire. Results: Of 1,286 pts invited, 707 (55%) completed the survey (male, 77%; age ≥55 y, 13%; currently employed, 78%; perihilar CCA, 47%; intrahepatic CCA, 41%; distal CCA, 12%; stage 1–2, 22%, stage 3a, 51%, stage 3b–4, 20%, in remission, 4%, unknown stage, 2%). Median duration from symptom onset to CCA diagnosis was 19 months (range, 1–241), and median duration from diagnosis to completing survey was 24 months (0–744). Initial misdiagnosis occurred in 35% of pts (n=247); among whom the most common misdiagnosis was gall bladder cancer (52% [n=129]); misdiagnosis of cancer of unknown origin occurred in 9% of pts (n=21). CCA was most frequently first suspected and diagnosed by oncologists (38% [n=269] and 70% [n=492]); among non-specialty physicians, more first suspected than diagnosed CCA (eg, primary care physicians, 22% [n=156] vs 3% [n=22]). Pts’ primary considerations in treatment decisions were physician judgment (38% [n=272]), QoL (16% [n=111]), time spent in hospital (11% [n=75]), laboratory results (11% [n=79]), other pt experiences (6% [n=42]). On the EORTC QLQ-BIL21, pts reported negative life impact from anxiety (mean [SD], 52.9 [19.2]), tiredness (52.3 [19.3]), and treatment (51.3 [28.8]). On the WPAI, 61% of pts (n=429) reported some, and 28% (n=200) reported considerable impact on work status. On the PHQ-9, 58% (n=408) of pts reported significant impact of depression on daily life, with 72% (n=506) and 25% (n=177) reporting that depression makes daily life somewhat, or very difficult, respectively. Pts also reported considerable or some impact on sexual desire (51% [n=362]; 36% [n=255]) and intimacy (47% [n=332]; 39% [n=273]). Conclusions: Pts with CCA who participated in this survey were mostly <55 y of age and had experienced CCA symptoms for an extended time (2 y) before diagnosis, at which time CCA was often initially misdiagnosed. The burden of CCA symptoms on daily lives, work productivity, and mental health is immense.

2021 ◽  
Author(s):  
Karolin R Krause ◽  
Sophie Chung ◽  
Terri Rodak ◽  
Kristin Cleverley ◽  
Nancy J Butcher ◽  
...  

Introduction: An important consideration for determining the severity of mental health symptoms is their impact on youth's daily lives. Those wishing to assess life impact face several challenges: First, various measurement instruments are available, including of global functioning, health-related quality of life (HRQoL), and well-being. Existing reviews have tended to focus on one of these domains; consequently, a comprehensive overview is lacking. Second, the extent to which such instruments truly capture distinct concepts is unclear. Third, many available scales conflate symptoms and their impact, thus undermining much needed analyses of associations between the two. Methods and analysis: A scoping umbrella review will examine existing reviews of life impact measures for use with 6-24-year-olds in the context of mental health and well-being research. We will systematically search five bibliographic databases (MEDLINE, Embase, APA PsycINFO, CINAHL, Web of Science), and conduct systematic record screening, data extraction and charting based on methodological guidance by the Joanna Briggs Institute (JBI). Data synthesis will involve the tabulation of scale characteristics, feasibility, and measurement properties, and the use of summary statistics to synthesize how these instruments operationalize life impact. Ethics and dissemination: This study will provide a comprehensive road map for researchers and clinicians seeking to assess life impact in youth mental health, providing guidance in navigating available measurement options. We will seek to publish the findings in a leading peer-reviewed journal in the field. Formal research ethics approval will not be required. Registration details: This protocol was registered prospectively with the Open Science Framework (osf.io/jfqdv).


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 3-3
Author(s):  
David Dingli ◽  
Joana E. Matos ◽  
Kerri Lehrhaupt ◽  
Sangeeta Krishnan ◽  
Scott B. Baver ◽  
...  

INTRODUCTION Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, acquired, hematologic disease characterized by chronic complement-mediated hemolysis. Treatment with the C5 inhibitor eculizumab has resulted in a reduction in intravascular hemolysis and improvements in morbidity and mortality. Even with the clinical benefit in PNH, eculizumab entails twice-monthly intravenous infusions in a hospital setting in most countries, adversely impacting patients' work productivity (Mastellos DC, et al.Semin Hematol. 2018;55(3):167-175). Lost productivity associated with eculizumab ranged from $344,000 in Russia to $4.3 million in the United States, without caregivers (Levy AR, et al.Blood. 2019;134(Supplement_1):4803). Furthermore, patients in a real-world study treated with eculizumab for 1 year experienced continued impairment in overall quality-of-life relative-to-normative reference scores for the general adult population (Ueda Y, et al.Int J Hematol. 2018;107(6):656-665). This study aims to understand the clinical, humanistic, and economic outcomes associated with burden of illness in about 150 patients with PNH globally. In these preliminary analyses, productivity loss and quality of life (QoL) in patients with PNH currently being treated with C5 inhibitors (eculizumab and ravulizumab) are assessed in patients in the United States. METHODS This cross-sectional survey administered to adult patients in the United States, ≥18 years of age, with self-reported diagnosis of PNH, was initiated in July 2020 and is ongoing. Patients were recruited through a patient advocacy group. Inclusion criteria to complete the secure online survey include current treatment with either eculizumab or ravulizumab, and agreement to provide informed consent and adverse event reporting. To investigate the impact of PNH on employment and activity, the Work Productivity and Activity Impairment-General Health (WPAI-GH) questionnaire was used. QoL was assessed using Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). For the preliminary WPAI-GH analysis presented here, descriptive statistics are reported for patients who have completed the survey thus far. Analyses examining the impact of PNH on FACIT-Fatigue, EORTC QLQ-C30, and other clinical outcomes assessments among patients on anti-C5 therapy are ongoing. RESULTS A total of 58 adult patients completed the survey as of August 6, 2020. Patients' median age was 52 years (range, 21-88) and 78% of patients were female. Twenty patients (34%) were on eculizumab and 38 (66%) were on ravulizumab. Most patients (93%) had initiated treatment ≥3 months prior to enrollment. In total, 23 (40%) patients reported that they were gainfully employed. Overall, 52% of employed patients reported missing hours of work in the prior 7 days due to their health problems (67% eculizumab and 43% ravulizumab). About 77% of working patients reported that their illness affected their productivity at work (89% eculizumab and 69% ravulizumab) due to the same reason. Employed patients reported an average of 13% (standard deviation, 21%) absenteeism (ie, work time lost due to being absent for illness in the previous week; eculizumab, 22% ± 29%, ravulizumab, 7% ± 12%). Patients reported 26 ± 27% impairment while working over the past 7 days (ie, presenteeism; eculizumab, 39 ± 31%, ravulizumab, 18 ± 22%). Total work productivity impairment was on average 32 ± 31% (eculizumab, 46 ± 35%; ravulizumab, 23 ± 24%). Nearly all patients (n = 54 [93%]) reported at least some impairment in their usual activities regardless of employment (eculizumab, 100%; ravulizumab, 90%). On average, patients reported 38 ± 23% of impaired activity in the previous week (eculizumab, 43 ± 20%; ravulizumab, 36 ± 25%). CONCLUSIONS Preliminary results from this burden of illness survey evaluating humanistic and economic outcomes in patients with PNH demonstrated substantial loss of work-related productivity, greatly diminished ability to work, and limitations in patients' usual activities while being treated with the C5 inhibitors eculizumab and ravulizumab. Disclosures Dingli: Karyopharm Therapeutics:Research Funding;Alexion:Consultancy;Bristol Myers Squibb:Research Funding;Janssen:Consultancy;Rigel:Consultancy;Apellis:Consultancy;Sanofi-Genzyme:Consultancy;Millenium:Consultancy.Matos:Kantar:Current Employment.Lehrhaupt:Kantar:Current Employment.Krishnan:Apellis:Current Employment, Current equity holder in publicly-traded company.Baver:Apellis:Current Employment, Current equity holder in publicly-traded company.Sarda:Apellis:Current Employment, Current equity holder in publicly-traded company.


2021 ◽  
pp. 089198872199681
Author(s):  
Kerry Hanna ◽  
Clarissa Giebel ◽  
Hilary Tetlow ◽  
Kym Ward ◽  
Justine Shenton ◽  
...  

Background: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. Method: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. Results: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. Conclusions: The findings from this research shed light on the longer-term psychological impacts of the UK Government’s public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.


2019 ◽  
Author(s):  
Teal Bohrer ◽  
Cass Dykeman

Rates of death by suicide continue to increase across the United States. Mental health clinicians often have contact with individuals expressing suicidal ideation, but research suggests clinicians may not be appropriately prepared to assess a client’s suicide risk. Numerous models and theories explain and assess suicidal ideation. In 2009, Thomas Joiner and his colleagues proposed the interpersonal-psychological theory of suicide (IPT), which focused on three main factors strongly supported by research over the preceding decade. The present study utilized a nonconcurrent, multiple-baseline, multiple-probe design as well as a one-group pretest–posttest design to examine the impact of an IPT-based training model. Participants were preservice mental health clinicians currently enrolled in Master’s degree programs. Participants completed assessments on IPT knowledge and suicide-assessment self-efficacy, and results from this study indicated a significant increase in knowledge after completion of the training, as well as a slight decrease in self-efficacy. This study suggests that suicide-assessment training, even when done remotely, can increase suicide-assessment knowledge. Future research should explore preservice mental health clinicians’ self-efficacy as well as those factors influencing the confidence these professionals feel in their assessments of risk.


Author(s):  
Marcielli Scremin ◽  
Pâmela Rodrigues Almeida ◽  
Kayla Araújo Ximenes Aguiar Palma ◽  
Priscilla De Oliveira Reis Alencastro

Nos últimos tempos, vem acontecendo mudanças significativas no estilo de vida dos indivíduos, que refletem no processo de envelhecimento, trabalho, cotidiano e na aposentadoria. O processo de envelhecimento é multifatorial e acontece com todos os indivíduos e variam de acordo com os hábitos de vida de cada ser humano. O objetivo principal da pesquisa foi analisar os impactos da aposentadoria no cotidiano do servidor público federal. Desse modo, utilizou-se a abordagem qualitativa, sendo utilizado o questionário BOAS e uma entrevista semiestruturada. A partir desses instrumentos, realizou-se a análise e identificação de questões da aposentadoria que podem influenciar na ruptura do cotidiano. Sendo assim, foram identificadas três categorias pertinentes à pesquisa, são elas: planejamento da aposentadoria, impacto no cotidiano e ressignificação do cotidiano. A velhice vem cercada de mudanças e uma delas é a aposentadoria. Para podermos falar de aposentadoria é preciso que entendamos qual o significado do trabalho na vida dos indivíduos, que pode ser uma forma de pertencimento social e/ou fazer parte da construção da identidade social. O impacto no cotidiano em decorrência da ausência do trabalho acarretou em mudanças positivas e negativas, sendo importante salientar que o primeiro impacto percebido com a aposentadoria foi a ausência de uma rotina que antes era proporcionada pelo trabalho, cada indivíduo buscou alternativas a fim de se reestabelecer e se reconhecer em sua nova realidade que é a aposentadoria. Abstract  In recent times, there have been significant changes in the lifestyle of individuals, which reflect in the process of aging, work, daily life and retirement. The aging process is multifactorial and happens to all individuals, and they vary according to the life habits of each human being. The main objective of the research was to analyze the impacts of retirement on the daily routine of the federal public servant. Thus, the qualitative approach was used, using the BOAS questionnaire and a semi-structured interview. From these instruments, the analysis and identification of retirement issues was carried out, which can influence the rupture of daily life. Thus, three categories relevant to research were identified: retirement planning, impact on daily life and re-signification of daily life. Old age is surrounded by change and one of them is retirement. In order to talk about retirement, we need to understand the meaning of work in individuals' lives, which can be a form of social belonging and / or part of the construction of social identity. The impact on daily life due to absence of work led to positive and negative changes, and it is important to note that the first impact perceived with retirement was the absence of a routine that was previously provided by work, each individual sought alternatives in order to reestablish and to recognize in its new reality that it is retirement.  Keywords: Retirement; Aging; Work.


2017 ◽  
Vol 9 (1) ◽  
Author(s):  
Reka Sundaram-Stukel ◽  
Ousmane Diallo ◽  
Benjamin Wiseman ◽  
Richard E. Miller

ObjectiveIn this paper we used hospital charges to assess costs incurred dueto prescription drug/opioid hospitalizationsIntroductionThere is a resurgence in the need to evaluate the economic burdenof prescription drug hospitalizations in the United States. We used theWisconsin 2014 Hospital Discharge data to examine opioid relatedhospitalization incidence and costs. Fentanyl, a powerful syntheticopioid, is frequently being used for as an intraoperative agent inanesthesia, and post-operative recovery in hospitals. According to a2013 study, synthetic Fentanyl is 40 times more potent than heroinand other prescription opioids; the strength of Fentanyl leads tosubstantial hospitalizations risks. Since, 1990 it has been availablewith a prescription in various forms such as transdermal patches orlollipops for treatment of serious chronic pain, most often prescribedfor late stage cancer patients. There have been reported fatal overdosesassociated with misuse of prescription fentanyl. In Wisconsin numberof total opioid related deaths increased by 51% from 2010 to 2014with the number of deaths involving prescription opioids specificallyincreased by 23% and number of deaths involving heroin increasedby 192%. We hypothesized that opioids prescription drugs, as a proxyof Fentanyl use, result in excessive health care costs.MethodsOpioid hospitalizations was defined as any mention of the ICD9codes (304,305) in any diagnostic field or the mention of (:E935.09) onthe first listed E-code. Our analysis used the Heckman 2-stage model,a method often used by Economists in absence of randomized controltrials. In presence of unobserved choice, for example opioid relatedhospitalizations, there usually is a correlation between error in anunderlying function (fentanyl prescription) and an estimated function(hospital charges) that introduces a selection bias. Heckman treats thiscorrelation between errors as an omitted variable bias. Therefore, weestimate a Heckman two step model using hospitalization: where theselection function is the probability of being hospitalized for syntheticopioid via logistic regression. Finally, we estimate the hospitalcharges realized if the patient was given opioids.ResultsMale patients are significantly more likely to be hospitalized foropioids than are female patients; while white patients are significantlymore likely to be admitted for opioid usage than other racialgroups. We also find that comorbid factors, such as mental health,significantly impact hospital charges associated with opioid use. Wefind that persons with private health insurance are associated withhigher rates of opioid use.ConclusionsUsing a Heckman two step approach we show that comorbidconditions such as mental health, Hepatitis C, injuries, etc significantlyaffect hospital charges associated with hospitalization. We usethese findings to explore the impact of the 2013 rule mandatingdoctors share opioid prescription information on the incidence ofopioid related death and hospital charges associated with opioidprescriptions. This work is policy relevant because alternatives toopioid prescription such as meditation, pain management therapiesmay be relevant.


10.2196/14171 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e14171 ◽  
Author(s):  
Sayyed Fawad Ali Shah ◽  
Julia Meredith Hess ◽  
Jessica R Goodkind

BackgroundConflicts around the world have resulted in a record high number of refugees. Family separation is a critical factor that impacts refugee mental health. Thus, it is important to explore refugees’ ability to maintain contact with family members across the globe and the ways in which they attempt to do so. It is increasingly common for refugees to use information and communication technologies (ICTs), which include mobile phones, the internet, and social media sites, such as Facebook, WhatsApp, Skype, and Viber, for these purposes.ObjectiveThe aim of this study was to explore refugees’ perceptions of the impact of communication through ICTs on their mental health, the exercise of agency by refugees within the context of ICT use, especially their communication with their families, and logistical issues that affect their access to ICTs in the United States.MethodsWe used a constructivist grounded theory approach to analyze in-depth interviews of 290 adult refugee participants from different countries, who were enrolled in a randomized controlled trial of a community-based mental health intervention.ResultsAnalyses showed that communication through ICTs had differing impacts on the mental health of refugee participants. ICTs, as channels of communication between separated families, were a major source of emotional and mental well-being for a large number of refugee participants. However, for some participants, the communication process with separated family members through digital technology was mentally and emotionally difficult. The participants also discussed ways in which they hide adversities from their families through selective use of different ICTs. Several participants noted logistical and financial barriers to communicating with their families through ICTs.ConclusionsThese findings are important in elucidating aspects of refugee agency and environmental constraints that need to be further explicated in theories related to ICT use as well as in providing insight for researchers and practitioners involved in efforts related to migration and mental health.


2021 ◽  
Vol 12 ◽  
Author(s):  
Joseph J. Frey ◽  
William J. Hall ◽  
Jeremy T. Goldbach ◽  
Paul Lanier

Lesbian, gay, bisexual, and pansexual (LGB+) individuals have disproportionate rates of mental illness. Minority stress and sexual identity stigma are posited as the primary social determinants of LGB+ mental health disparities. Discussions in the literature have questioned the impact of sexual identity stigma in a world increasingly accepting of sexual minorities. Additionally, the LGB+ population in the United States South is often overlooked in American research. This article details a qualitative study exploring experiences related to sexual identity stigma among adults who identify as LGB+ in the United States South. Semi-structured interviews with 16 individuals were analyzed using content analysis. Six thematic categories of stigma emerged from participants’ experiences: (a) navigating an LGB+ identity, (b) social acceptability of an LGB+ identity, (c) expectation of LGB+ stigma, (d) interpersonal discrimination and harassment, (e) structural stigma, and (f) relationship with the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community. Findings suggest that sexual identity stigma remains a common experience among these Southern United States participants. Further, thematic categories and subcategories primarily aligned with extant theory with one exception: Intracommunity stigma, a form of stigma emanating from the LGBTQ community, emerged as a stigma type not currently accounted for in theoretical foundations underpinning mental health disparities in this population.


2021 ◽  
Author(s):  
Robin Achterhof ◽  
Inez Myin-Germeys ◽  
Eva Bamps ◽  
Noëmi Hagemann ◽  
Karlijn Susanna Francisca Maria Hermans ◽  
...  

Early findings on the impact of the COVID-19 pandemic on adolescents, suggest that – despite being at the lowest physical health risk – both their mental health and day-to-day social lives are strongly affected. In this longitudinal study, we assessed changes in adolescent psychopathology symptoms, the quality and quantity of daily-life social interactions, and the relationship between social interactions and psychopathology symptoms before and during the pandemic.A sample of n=173 Flemish adolescents (mean age=16.0 at latest measurement; 89% girls) from the SIGMA cohort was tested between January 2018 - June 2019; and between April 27th - May 10th 2020. Subclinical psychopathology was assessed using the Brief Symptom Inventory-53; daily social interactions were assessed in six-day experience sampling periods with ten daily questionnaires.Multilevel linear and logistic regression analyses indicated lower general psychopathology and anxiety symptoms, beyond age effects; fewer face-to-face social interactions, more online social interactions; and higher-quality face-to-face interactions during the pandemic than before. Negative associations between psychopathology and the quality of face-to-face peer and family interactions were stronger during the pandemic than pre-pandemic.The observed decrease and stability in psychopathology symptoms is surprising and potentially reflects resilience. Although digital communication may buffer much of the quarantine-induced distress, the current results imply that high-quality face-to-face interactions with family and peers may have been more powerful in keeping adolescents resilient. As restrictions are lifted and adolescents’ daily lives and social worlds change, it is crucial to learn more about the longer-term effects of the experienced social deprivation.


2009 ◽  
Vol 9 (4) ◽  
pp. 263-269 ◽  
Author(s):  
Whitney P. Witt ◽  
Carissa A. Gottlieb ◽  
John Hampton ◽  
Kristin Litzelman

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