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BACKGROUND: Individuals with substance use disorders (SUDs) are hospitalized in growing numbers. Stigma is pervasive among their hospital providers, and SUD management during medical admissions is often inadequate. However, little is known about how these patients perceive their care quality. In particular, few studies have explored their positive care perceptions or recommendations for improvement. OBJECTIVE: To explore perspectives on positive aspects, negative aspects, and consequences of care, as well as recommendations for improvement among hospitalized patients with SUDs. DESIGN AND PARTICIPANTS: We conducted semi-structured, in-depth bedside interviews (n = 15) with patients who have been diagnosed with a SUD and were admitted to medical or surgical floors of an urban academic medical center. APPROACH: Interviews explored patients' hospital experiences and recommendations for improvement. The interviews were audio-recorded, transcribed verbatim, and imported into NVivo software. Two reviewers independently coded the transcripts using interpretative phenomenological analysis and inductive thematic analysis according to grounded theory, and recurring themes were identified from the data. Patients' demographic and clinical data were analyzed with descriptive statistics. KEY RESULTS: Perceived clinical and emotional proficiency were the most important components of positive experiences, whereas perceived bias and stigmatized attitudes, clinical improficiency, and inhumane treatment were characteristic of negative experiences. Such care components were most consequential for patients' emotional well-being, trust, and care quality. Recommendations for improving care included specific suggestions for initiating and promoting continued recovery, educating, and partnering in compassionate care. CONCLUSIONS: Hospitalized patients with SUDs often experience lower quality and less compassionate care linked to pervasive stigma and poor outcomes. Our study highlights under-recognized perspectives from this patient population, including socioemotional consequences of care and recommendations grounded in lived experiences. By striving to advance our care in accordance with patients' viewpoints, we can turn hospitalizations into opportunities for engagement and promoting recovery.
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Hospitalización , Investigación Cualitativa , Trastornos Relacionados con Sustancias , Humanos , Masculino , Femenino , Trastornos Relacionados con Sustancias/terapia , Trastornos Relacionados con Sustancias/psicología , Persona de Mediana Edad , Adulto , Estigma Social , Anciano , Pacientes Internos/psicologíaRESUMEN
Objective: To produce a qualitative description of the impact of moral injury on medical providers during the COVID-19 pandemic.Methods: A convergent mixed-methods study design was used to explore experiences of health care workers during the first 12 months of the COVID-19 pandemic. Participants completed the Moral Injury Symptom Scale-HP (MISS-HP) and a 60-minute interview, in which they described their work experiences from March 2020 through January 2021. The study was conducted between May 2021 and August 2021.Results: Eight physicians and 6 nurses were interviewed. Most participants (71%) worked in the emergency department, while 29% worked in the medical intensive care unit (MICU). MISS-HP scores were 49 on average and ranged from 29 to 73. Among the demographic groups, MICU participants scored the highest (56) and men scored the lowest (40). There were no significant differences in scores between any demographic group. The analysis of interview data showed how omissions and commissions in one's professional duties created internal conflicts, which were inextricably linked to a deeper sense of feelings of guilt and blame around experiences of betraying or being betrayed and an inability to uphold one's moral values.Conclusions: The pandemic upended a previously reliable and imperceptible experience of a background of safety, in which the provision of both material resources and human presence was expected without question. Future directions generated from this study might examine the role of dependency on leadership structures and relationships with self and others that create the conditions for moral injury.Prim Care Companion CNS Disord 2024;26(1):23m03651. Author affiliations are listed at the end of this article.
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COVID-19 , Médicos , Masculino , Humanos , Pandemias , Personal de Salud , CogniciónRESUMEN
BACKGROUND: Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients' decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy. METHODS: Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis. RESULTS: The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants' decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints. CONCLUSIONS: Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.
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Toma de Decisiones , Neoplasias , Adulto , Humanos , Participación del Paciente/psicología , Consentimiento Informado , Neoplasias/terapia , Neoplasias/psicología , Investigación Cualitativa , InmunoterapiaRESUMEN
INTRODUCTION: Prior literature establishes noteworthy relationships between suicidal symptoms and substance use disorders (SUDs), particularly opioid use disorder (OUD). However, engagement with health care services among this vulnerable population remains underinvestigated. This study sought to examine patterns of health care use, identify risk factors in seeking treatment, and assess associations between outpatient service use and emergency department (ED) visits. METHODS: Using electronic health records (EHRs) derived from five health systems across New York City, the study selected 7881 adults with suicidal symptoms (including suicidal ideation, suicide attempt, or self-harm) and SUDs between 2010 and 2019. To examine the association between SUDs (including OUD) and all-cause service use (outpatient, inpatient, and ED), we performed quasi-Poisson regressions adjusted for age, gender, and chronic disease burden, and we estimated the relative risks (RR) of associated factors. Next, the study evaluated cause-specific utilization within each resource category (SUD-related, suicide-related, and other-psychiatric) and compared them using Mann-Whitney U tests. Finally, we used adjusted quasi-Poisson regression models to analyze the association between outpatient and ED utilization among different risk groups. RESULTS: Among patients with suicidal symptoms and SUD diagnoses, relative to other SUDs, a diagnosis of OUD was associated with higher all-cause outpatient visits (RR: 1.22), ED visits (RR: 1.54), and inpatient hospitalizations (RR: 1.67) (ps < 0.001). Men had a lower risk of having outpatient visits (RR: 0.80) and inpatient hospitalizations (RR: 0.90), and older age protected against ED visits (RR range: 0.59-0.69) (ps < 0.001). OUD was associated with increased SUD-related encounters across all settings, and increased suicide-related ED visits and inpatient hospitalizations (p < 0.001). Individuals with more mental health outpatient visits were less likely to have suicide-related ED visits (RR: 0.86, p < 0.01), however this association was not found among younger and male patients with OUD. Although few OUD patients received medications for OUD (MOUD) treatment (9.9 %), methadone composed the majority of MOUD prescriptions (77.7 %), of which over 70 % were prescribed during an ED encounter. CONCLUSIONS: This study reinforces the importance of tailoring SUD and suicide risk interventions to different age groups and types of SUDs, and highlights missed opportunities for deploying screening and prevention resources among the male and OUD populations. Redressing underutilization of MOUD remains a priority to reduce acute health outcomes among younger patients with OUD.
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Analgésicos Opioides , Trastornos Relacionados con Opioides , Adulto , Humanos , Masculino , Analgésicos Opioides/efectos adversos , Ideación Suicida , Intento de Suicidio/prevención & control , Trastornos Relacionados con Opioides/epidemiología , Atención a la SaludRESUMEN
Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.
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Neoplasias , Humanos , Adulto Joven , Adolescente , Adulto , Neoplasias/psicología , Salud Mental , CanadáRESUMEN
Background: Family caregivers of cancer survivors experience equal or greater levels of fear of cancer recurrence (FCR) than survivors themselves. Some interventions have demonstrated their ability to reduce FCR among cancer survivors and dyads (patient and caregivers). However, to date, no validated intervention exists to focus solely on family caregiver's FCR. Objectives: This study aimed to (1) adapt the evidence-based in-person Fear Of Recurrence Therapy (FORT) for family caregivers (referred here in as FC-FORT) and to a virtual delivery format and (2) test its usability when offered virtually. Methods: The adaptation of FC-FORT was overseen by an advisory board and guided by the Information Systems Research Framework. Following this adaptation, female family caregivers and therapists were recruited for the usability study. Participants took part in 7 weekly virtual group therapy sessions, a semi-structured exit interview and completed session feedback questionnaires. Therapists were offered a virtual training and weekly supervision. Fidelity of treatment administration was assessed each session. Quantitative data were analyzed using descriptive statistics. Exit interviews were transcribed verbatim using NVivo Transcription and coded using conventional content analysis. Results were presented back to the advisory board to further refine FC-FORT. Results: The advisory board (n = 16) met virtually on 7 occasions to adapt FC-FORT (i.e., patient manuals, virtual format) and discuss recruitment strategies. Minor (e.g., revised text, adapted materials to virtual format) and major adaptations (e.g., added and rearranged sessions) were made to FC-FORT and subsequently approved by the advisory board. Four family caregivers and three therapists took part in the first round of the usability testing. Six family caregivers and the same three therapists took part in the second round. Overall, participants were very satisfied with FC-FORT's usability. Qualitative analysis identified 4 key themes: usability of FC-FORT, satisfaction and engagement with content, group cohesion, and impact of FC-FORT. All participants indicated that they would recommend FC-FORT to others as is. Conclusions: Using a multidisciplinary advisory board, our team successfully adapted FC-FORT and tested its usability using videoconferencing. Results from this study indicate that the efficacy and acceptability of FC-FORT are now ready to be tested in a larger pilot study.
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The genomic basis of cutaneous T-cell lymphoma has been characterized by gene copy number alterations and genomic sequencing, but there are few clinical tests that are being widely used to inform the diagnosis and prognosis of leukemic cutaneous T-cell lymphoma that may arise as a progression from mycosis fungoides or de novo as Sézary syndrome. An 11-gene FISH panel of TP53, RB1, DNMT3A, FAS, ZEB1, ARID1A, ATM, and CDKN2A deletions and MYC, signal transducer and activator of transcription gene (STAT)3/5B, and CARD11 amplifications was previously found to encapsulate >95% of gene copy number variations in leukemic cutaneous T-cell lymphoma. Through a retrospective analysis of patients with leukemic cutaneous T-cell lymphoma seen at the Yale Cancer Center from 2014 to 2020, we gathered the relevant genes as they became available and correlated them to factors with prognostic relevance as a proof of concept to show the potential utility in further developing a limited gene panel for prognosis. In this study, we show that the abnormal FISH results show an association with clinically relevant factors (blood stage, CD4:8 ratio, and percentage blood involvement) and have a nonsignificant statistical trend (>90%) toward correlation with overall survival. In addition, the previous cost-effective panels were signal transducer and activator of transcription (STAT)3/5B, MYC, TP53, and ARID1A. We now suggest adding RB1 and ZEB1 on the basis of our findings.
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BACKGROUND: Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users. OBJECTIVE: We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2). METHODS: We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ). RESULTS: In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed "chapters"), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage. CONCLUSIONS: The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial.
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INTRODUCTION: Patients undergoing allogenic hematopoietic stem cell transplantation (allo-HSCT) require indwelling central venous catheters. The comparative incidence, risk, and outcome of isolated catheter-related deep venous thrombosis (CR-DVT) versus pulmonary embolism/lower-extremity DVT (PE/LE-DVT) remains unclear. MATERIALS AND METHODS: We conducted a retrospective cohort study for patients undergoing allo-HSCT from 2006 to 2019. CR-DVT and PE/LE-DVT outcomes were screened using ICD codes and radiology reports and confirmed by medical record reviews. Cox regression models were used to assess the association between thrombotic outcomes and pertinent baseline and time-varying covariates. The impact of thrombotic events within 1-year post-transplant (time-varying) on overall mortality was also assessed. RESULTS: Among 2879 patients, the cumulative incidence of isolated CR-DVT and PE/LE-DVT at 12 months was 4.2 % and 4.8 %, respectively. The strongest time-varying predictor for onset of CR-DVT and PE/LE-DVT was hospitalization inpatient status (HR 3.71 [95 % CI 2.16-6.37] and 3.99 [95 % CI 2.00-7.99], respectively). Other overlapping variables included lymphoma diagnosis and BMI > 35 kg/m2, whereas acute GVHD grades 2-4 were found to be significantly associated with risk of PE/LE-DVT but not CR-DVT. After adjusting for baseline variables and acute GVHD, the occurrences of CR-DVT and PE/LE-DVT were both independently associated with increased overall mortality (HR 1.58 [95 % CI 1.23-2.02] and HR 1.53 [95 % CI 1.19-1.97], respectively). CONCLUSIONS: We observed a high incidence of both CR-DVT and PE/LE-DVT with overlapping and unique risk factors. CR-DVT was also associated with increased mortality similar to PE/LE-DVT. Standardized strategies targeting high-risk hospitalization periods may help mitigate the development of thrombotic outcomes post-transplant.
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Catéteres Venosos Centrales , Enfermedad Injerto contra Huésped , Trasplante de Células Madre Hematopoyéticas , Embolia Pulmonar , Trombosis de la Vena , Humanos , Trombosis de la Vena/etiología , Trombosis de la Vena/complicaciones , Estudios Retrospectivos , Embolia Pulmonar/etiología , Factores de Riesgo , Catéteres Venosos Centrales/efectos adversos , Enfermedad Injerto contra Huésped/complicaciones , Trasplante de Células Madre Hematopoyéticas/efectos adversosRESUMEN
Patients with co-occurring substance use disorders and borderline personality disorder have high rates of morbidity, mortality, and utilization of medical services. Their acute symptoms present complex challenges to clinical staff in the medical emergency department related to both logistics and management of countertransference. This article examines patterns in countertransference and proposes application of psychodynamically informed principles and strategies to facilitate safety and enhance communication during fraught clinical encounters.
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Trastorno de Personalidad Limítrofe , Trastornos Relacionados con Sustancias , Humanos , Trastorno de Personalidad Limítrofe/complicaciones , Trastorno de Personalidad Limítrofe/diagnóstico , Trastorno de Personalidad Limítrofe/epidemiología , Contratransferencia , Trastornos Relacionados con Sustancias/complicaciones , Trastornos Relacionados con Sustancias/epidemiología , Trastornos Relacionados con Sustancias/terapia , Servicio de Urgencia en Hospital , PersonalidadRESUMEN
In cancer care, gaps in support to help patients manage and live with the side-effects from cancer treatments have increased the emphasis on empowering patients to be more active and involved in managing their own health. However, empowerment in relation to promoting self-management behaviors is not well understood. Using the social constructivist grounded theory approach, our goal was to develop a theoretical understanding of this phenomenon in relation to the self-management behaviors of post-treatment cancer patients. Twenty-two post-treatment cancer patients participated in a semi-structured focused interview to co-construct with us how empowerment is defined, described, and experienced in relation to their capacity to self-manage. Through this co-construction, we defined empowerment as a process of personal growth, a display of fortitude and strength when participants confronted the impact of their illness that emerged in two dynamic and paradoxical ways: 1) establishing control over the impact of the illness as a means to maintain normalcy and to circumvent change over an eroding and changing sense of self and 2) relinquishing control over aspects of the illness deemed irrepressible and acknowledging and accepting change. When successful at establishing and/or relinquishing control, participants no longer viewed cancer as a threat, but re-interpreted their illness as also having a beneficial "empowering" experience and more capable of managing. Findings will guide the development of self-management interventions that use empowerment as a core construct.
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Supervivientes de Cáncer , Neoplasias , Humanos , Neoplasias/terapiaRESUMEN
PURPOSE: Caregivers of patients with cancer cope with socioemotional challenges, which can adversely affect their well-being. We developed an intervention, expressive writing and reading (EWR), to promote emotional processing and social connectedness among caregivers. In a single-arm pilot study, we assessed its feasibility and perceived usefulness. METHODS: Caregivers participated in weekly 1.5-hour EWR workshops offered over 20 weeks. After 4 sessions, they completed semistructured interviews, which were analyzed using qualitative descriptive analysis. FINDINGS: Of 65 caregivers approached, 25 were eligible, 18 consented, and 9 (50%) caregivers completed at least 4 workshops and the interview. Their responses revealed 3 themes: "inner processing," "interpersonal learning," and "enhanced processing and preparedness." Perceived benefits of EWR included emotional and cognitive processing (individual and collaborative), learning from the emotions and experiences of other caregivers, and preparing for upcoming challenges. CONCLUSIONS: Expressive writing and reading can be a safe and cost-effective supportive intervention for caregivers of patients with cancer.
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Cuidadores , Neoplasias , Humanos , Cuidadores/psicología , Proyectos Piloto , Lectura , Emociones , Neoplasias/terapia , Neoplasias/psicología , EscrituraRESUMEN
BACKGROUND: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. AIM: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. DESIGN: Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7). DATA SOURCES: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. RESULTS: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States (n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews (n = 33). Three main topics were identified: Physical symptom burden (n = 26, 51%), Psychological and social needs (n = 33, 65%), and end-of-life care (n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. CONCLUSION: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.