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BACKGROUND: A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed. METHODS: This secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale-CF (MSAS-CF), the CF Questionnaire-Revised (CFQ-R), the Patient Health Questionnaire (PHQ-8), the Generalized Anxiety Disorder (GAD-7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality-of-life domains. RESULTS: The sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two-component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS-CF and CFQ-R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ-R Physical Functioning and Respiratory Symptoms domain scores. CONCLUSIONS: In adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.
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Importance: Nursing home (NH) transfers to hospitals are common and have been associated with cognitive decline; approximately 45% of NH hospital transfers are potentially avoidable hospitalizations (PAHs). Objective: To determine PAH incidence for historically marginalized NH residents with severe cognitive impairment compared with non-Hispanic White residents. Design, Setting, and Participants: This cross-sectional study merged 2018 Centers for Medicaid & Medicare Services datasets and LTCFocus, a public dataset on US NH care, for US NH residents aged 65 years and older who had a hospitalization. Analyses were performed from January to May 2022. Exposure: Race and ethnicity of NH residents. Main Outcomes and Measures: Racial and ethnic differences in resident-level annual rates of PAHs were estimated for residents with and without severe cognitive impairment (measured using the Cognitive Function Scale), controlling for resident characteristics, comorbidities, dual eligibility, and time at risk. PAHs were defined as NH hospital transfers that resulted from neglectful NH care or for which NH treatment would have been appropriate. Results: Of 2â¯098â¯385 NH residents nationwide included in the study, 7151 (0.3%) were American Indian or Alaska Native, 39â¯873 (1.9%) were Asian, 229â¯112 (10.9%) were Black or African American, 99â¯304 (4.7%) were Hispanic, 2785 (0.1%) were Native Hawaiian or Pacific Islander, 1â¯713â¯670 (81.7%) were White, and 6490 (0.3%) were multiracial; 1â¯355â¯143 (64.6%) were female; 128â¯997 (6.2%) were severely cognitively impaired; and the mean (SD) age was 81.8 (8.7) years. PAH incidence rate ratios (IRRs) were significantly greater for residents with severe cognitive impairment compared with those without. In unadjusted analyses comparing historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment, American Indian or Alaska Native residents had a 49% higher PAH incidence (IRR, 1.49 [95% CI, 1.10-2.01]), Black or African American residents had a 64% higher incidence (IRR, 1.64 [95% CI, 1.48-1.81]), and Hispanic residents had a 45% higher incidence (IRR, 1.45 [95% CI, 1.29-1.62]). Higher incidences persisted for historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment in adjusted analyses. Asian residents had a 24% higher PAH incidence (IRR, 1.24 [95% CI, 1.06-1.45]), Black or African American residents had a 48% higher incidence (IRR, 1.48 [95% CI, 1.36-1.60]), and Hispanic residents had a 27% higher incidence (IRR, 1.27 [95% CI, 1.16-1.39]). Conclusions and Relevance: In this cross-sectional study of PAHs, compared with non-Hispanic White NH residents, historically marginalized residents had increased PAH incidence. In the presence of severe cognitive impairment, incidence rates increased significantly compared with rates for residents without severe cognitive impairment. These results suggest that identification of residents with severe cognitive impairment and proper NH care may help prevent further cognitive decline by avoiding PAHs.
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Hospitalización , Casas de Salud , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Disfunción Cognitiva/epidemiología , Disfunción Cognitiva/etnología , Estudios Transversales , Hospitalización/estadística & datos numéricos , Casas de Salud/estadística & datos numéricos , Transferencia de Pacientes/estadística & datos numéricos , Estados Unidos/epidemiología , Población Blanca/estadística & datos numéricos , Blanco , Hispánicos o Latinos , Indio Americano o Nativo de Alaska , Asiático , Negro o Afroamericano , Nativos de Hawái y Otras Islas del Pacífico , Grupos RacialesRESUMEN
OBJECTIVES: Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Adult populations in NH settings. METHODS: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale. RESULTS: Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs. CONCLUSIONS AND IMPLICATIONS: The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population.
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Casas de Salud , Cuidado Terminal , Humanos , Directivas Anticipadas , Hospitalización , Planificación de Atención al PacienteRESUMEN
BACKGROUND: Little is known about the burden of illness experienced by people with cystic fibrosis (pwCF) since the advent of CF transmembrane conductance regulator (CFTR) modulator therapies. Studies that characterize the nature of illness burden are needed to inform the development and implementation of palliative care programs that can serve this population and address quality of life concerns. METHODS: Adults with CF treated at five U.S. CF centers were surveyed to obtain baseline data for the Improving Life with CF primary palliative care implementation trial. Consenting patients completed the Integrated Palliative Care Outcome Scale (IPOS), a multidimensional measure of unmet needs for palliative care. Sociodemographic and clinical information was also obtained. The associations among these variables were examined through bivariate and multivariable analyses. RESULTS: Among 256 adults, the most distressing symptoms included not feeling "at peace", communication difficulties with family/friends, anxiety over illness or its treatment, and a lack of energy. In the multivariable analyses, CFTR modulator use was associated with lower IPOS total and physical symptoms scores; female sex and increased hospitalizations were associated with higher scores. Increased age and history of distal intestinal obstructive syndrome were associated with higher IPOS physical symptoms scores. CONCLUSIONS: These findings illuminate the nature of illness burden for pwCF in the era of CFTR modulator therapies. Although illness burden is positively affected by modulator therapy, there is a continuing need for palliative care to address physical, emotional, and spiritual distress, and the communication and practical needs experienced by adults with CF.
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Among people with cystic fibrosis (CF), illness burden is multifaceted, and symptoms may fluctuate in intensity across a lifespan. Caregivers of people with CF may also experience distressing symptoms. Recent developments in CF care, including the availability of highly effective modulator therapies (HEMTs) and new palliative care guidelines promoting palliative care screening may help alleviate symptoms. The objective of this review was to present a narrative view of the recent literature on symptom burden in CF, new screening approaches informed by the Cystic Fibrosis Foundation (CFF) palliative care guidelines, and early data from studies examining the impact of HEMTs on CF symptom burden. A review of the relevant literature was conducted using Google Scholar and PubMed. Included articles covered approaches to burden assessment in CF and other chronic illnesses, epidemiology of CF symptom burden, the impact of HEMTs on symptom burden, and the CFF palliative care guidelines. A primary palliative care model implementing the CFF guidelines was also described. Results of this review show that while recent developments in CF care have led to a reduction in physical symptoms, mental health symptoms remain prevalent. Ongoing screening and triage can ensure that physical symptoms, psychological symptoms, social needs, practical problems, and communication concerns are addressed by care teams.
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To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("Improving Life with CF") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.
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Background: The hospice benefit can improve end-of-life outcomes, but is underutilized, particularly in low enrollment states such as New York. Little is known about this underutilization. Objective: The first part of a mixed-methods study aimed to compile and rank barriers to hospice utilization and identify differences between New York and the rest of the United States. Setting/Subjects and Design: Clinicians, administrators, and hospice employees participated in six sessions (6-12 per session) across New York State, USA. During each session, a methodology known as nominal group technique was used to elicit barriers to hospice, identify those specific to New York, and suggest interventions to improve access. The analysis involved first categorizing and ranking barriers, and then conducting a thematic analysis of session transcripts to examine barriers specific to New York and proposed interventions to improve utilization. Results: Fifty-seven participants ranked 54 barriers, which were grouped into nine categories. These reflected concerns about clinician knowledge and attitudes or beliefs; patient and family knowledge, attitudes or beliefs, and resources; and both structural elements and practices of hospices, nursing homes, palliative care services, and other entities in the health care system. Thirteen barriers from eight categories were ranked among the top five by ≥10% of participants; only 10 of the 54 were judged to be specific to New York. Thematic analysis highlighted 14 barriers important in New York and suggested 11 interventions to improve hospice access. Conclusions: A categorization and ranking of barriers may guide future interventions to improve low hospice utilization. Novel studies with heterogeneous stakeholders are needed.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , New York , Casas de Salud , Estados UnidosRESUMEN
Background: Approximately one-quarter of all deaths in the United States occur in nursing homes (NHs). Palliative care has the potential to improve NH end-of-life care, but more information is needed on the provision of palliative care in NHs serving Black and Hispanic residents. Objective: To determine whether palliative care services in United States NHs are associated with differences in the concentrations of Black and Hispanic residents, respectively, and the impact by region. Design: We conducted a cross-sectional analysis. The outcome was NH palliative care services (measured by an earlier national survey); total scores ranged from 0 to 100 (higher scores indicated more services). Other data included the Minimum Data Set and administrative data. The independent variables were concentration of Black and Hispanic residents (i.e., <3%, 3-10%, >10%), respectively, and models were stratified by region (i.e., Northeast, Midwest, South and West). We compared unadjusted, weighted mean palliative care services by the concentration of Black and Hispanic residents and computed NH-level multivariable linear regressions. Setting/Subjects: Eight hundred sixty-nine (weighted n = 15,020) NHs across the United States. Results: Multivariable analyses showed fewer palliative care services provided in NHs with greater concentrations of Black and Hispanic residents. Fewer palliative care services were reported in NHs in the Northeast, for which >10% of the resident population was Black, and NHs in the West for which >10% was Hispanic versus NHs with <3% of the population being Black and Hispanic (-13.7; p < 0.001 and -9.3; p < 0.05, respectively). Conclusion: We observed differences in NH palliative care by region and with greater concentration of Black and Hispanic residents. Our findings suggest that greater investment in NH palliative care services may be an important strategy to advance health equity in end-of-life care for Black and Hispanic residents.
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Cuidados Paliativos , Cuidado Terminal , Estudios Transversales , Hispánicos o Latinos , Humanos , Casas de Salud , Estados UnidosRESUMEN
CONTEXT: Hospice utilization in New York State (NYS) is low compared to the rest of the U.S. OBJECTIVES: The first part of a mixed-methods study elicited information from New York State stakeholders and identified 54 hospice-related barriers in nine categories, some specific to NYS. This second part used national data to examine the differences between NYS and the rest of the country by evaluating the variables associated with low NYS hospice utilization. METHODS: Ten Medicare or publicly available datasets provided data from the year prior to death for all traditional Medicare-insured patients dying in 2018. Multivariate analyses identified variables independently associated with differences in hospice enrollment or length of stay between NYS and the rest of the country. RESULTS: The NYS population was relatively older, included more women and minorities, had higher socioeconomic status (SES), and saw more physicians during the last two years of life. NYS had more physicians, more skilled nursing facility (SNF) beds, and fewer for-profit hospitals, SNFs, home care agencies, and hospice agencies. In multivariate analyses, lower NYS hospice utilization was associated with higher SES; more physicians seen during the last two years of life; more SNF beds and fewer for-profit SNF facilities; and fewer hospice agencies. CONCLUSION: NYS's low hospice utilization is independently associated with diverse factors, including those related to the health care system. Combined with information from stakeholders, these findings may help target, and inform initiatives to improve hospice utilization.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Anciano , Femenino , Humanos , Medicare , New York , Estudios Retrospectivos , Instituciones de Cuidados Especializados de Enfermería , Estados UnidosRESUMEN
BACKGROUND: Primary care providers manage most patients with chronic pain. Pain is a complex problem, particularly in underserved populations. A technology-enabled, point-of-care decision support tool may improve pain management outcomes. METHODS: We created an electronic health record (EHR)-based decision support tool, the Pain Management Support System-Primary Care (PMSS-PC), and studied the tool-plus-education in 6 Federally Qualified Health Center practices using a randomized, wait-list controlled design. The PMSS-PC generated "best practice alerts," gave clinicians access to a pain assessment template, psychological distress and substance use measures, guidelines for drug and non-drug therapies, and facilitated referrals. Practices were randomly assigned to early vs delayed (after 6 months) implementation of the intervention, including technical support and 6 webinars. The primary outcome was change in worst pain intensity scores after 6 months, assessed on the Brief Pain Inventory-Short Form. Changes in outcomes were compared between the practices using linear multilevel modeling. The EHR provided clinician data on PMSS-PC utilization. RESULTS: The 256 patients in the early implementation practices had significantly improved worst pain (standardized effect size [ES] = -.32) compared with the 272 patients in the delayed implementation practices (ES = -.11). There was very low clinician uptake of the intervention in both conditions. CONCLUSIONS: Early implementation of the PMSS-PC improved worst pain, but this effect cannot be attributed to clinician use of the tool. Further PMSS-PC development is not indicated, but practice-level interventions can improve pain, and studies are needed to identify the determinants of change.
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Analgésicos no Narcóticos/uso terapéutico , Analgésicos Opioides/uso terapéutico , Terapias Complementarias , Sistemas de Apoyo a Decisiones Clínicas , Terapia por Ejercicio , Manejo del Dolor/métodos , Dolor/tratamiento farmacológico , Atención Primaria de Salud/métodos , Adulto , Anciano , Registros Electrónicos de Salud , Femenino , Humanos , Modelos Lineales , Masculino , Persona de Mediana Edad , Análisis Multinivel , Dimensión del Dolor , Guías de Práctica Clínica como Asunto , Distrés Psicológico , Calidad de VidaRESUMEN
BACKGROUND: First-generation Chinese American patients have low engagement in advance care planning (ACP). Among the causes may be clinician uncertainty about traditional cultural values. AIM: Based on a survey identifying barriers to ACP among older ethnic Chinese American patients, we created a toolkit to support clinicians in culturally relevant ACP practices and conducted a pilot test to evaluate usability, acceptability, and preliminary outcomes. DESIGN/SETTING/PARTICIPANTS: The toolkit includes culturally relevant information and an ACP guideline with a prompt list of questions. Six clinicians (three physicians, two nurse practitioners, and one physician assistant) in two New York City-based practices piloted the toolkit through discussions with 66 patients. RESULTS: Patients' age averaged 70.2 years (SD=12.4); 56.1% were women. Almost two-thirds had not finished high school and 53.0% spoke only Cantonese. More than three-quarters (78.8%) did not understand the purpose of ACP before the discussion. During the discussion, 58 patients (87.9%) completed a new proxy naming a health care agent, 21 (31.8%) requested a nonhospital DNR order, and two (3%) completed a living will. Topics discussed included treatment preferences (discussed with 80.3% of patients); health care values (77.3%); treatment decisions (72.7%); goals of care (68.2%), and hospice (1.5%). Five of the six clinicians expressed satisfaction ("very" or "somewhat") with the toolkit, four were "very" comfortable using it, and three stated that it helped them "a lot" with effective discussions. CONCLUSIONS: An ACP toolkit may facilitate culturally relevant ACP discussions by increasing clinician competency and patient engagement. Further studies of this approach are needed.
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Planificación Anticipada de Atención , Asiático , Directivas Anticipadas , Anciano , Femenino , Humanos , Satisfacción Personal , ApoderadoRESUMEN
Cancer is common among older Chinese American immigrants. Psychological distress may be associated with cancer pain, yet prior studies have not examined this relationship. We conducted a secondary analysis of 514 Chinese Americans with cancer-related pain. Patients completed validated questionnaires, including the Chinese Health Questionnaire-12 (CHQ-12). Analyses evaluated associations among sociodemographics, acculturation, psychological distress, and pain variables. Most patients had low acculturation and socioeconomic levels. Overall, 51.9% of patients reported moderate-severe psychological distress, 35.8% reported worst pain intensity ≥7/10 over the previous week and 41.2% had high pain-related distress. Higher CHQ-12 scores were associated with younger age (ß = -0.13); lower educational level (ß = -0.12); birthplace in China (ß = -0.18); lack of a caregiver (ß = -0.10); higher worst pain intensity (ß = 0.15); and higher pain-related distress (ß = 0.28; all p < 0.05; R2 = 0.23). Chinese American cancer patients with chronic pain experience high psychological distress, which is associated with pain characteristics and other social factors.
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Dolor en Cáncer , Dolor Crónico , Neoplasias , Asiático , Dolor en Cáncer/epidemiología , Dolor Crónico/epidemiología , Humanos , Vida Independiente , Prevalencia , Estrés Psicológico/epidemiologíaRESUMEN
Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.
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Fibrosis Quística , Cuidadores , Consenso , Fibrosis Quística/terapia , Humanos , Cuidados Paliativos , Calidad de Vida , Revisiones Sistemáticas como AsuntoRESUMEN
CONTEXT: Many in the rapidly growing Chinese-American population are non-English-speaking and medically underserved, and few engage in advance care planning (ACP). Evaluating culturally-determined factors that may inhibit ACP can inform programs designed to increase ACP engagement. OBJECTIVES: To describe attitudes and beliefs concerning ACP in older, non-English-speaking Chinese Americans in a medically-underserved urban region. METHODS: Patients were consecutively recruited from a primary care practice in New York City to participate in a cross-sectional survey. Attitudes and beliefs were measured using an ACP Survey Tool and the validated Traditional Chinese Death Beliefs measure. Exploratory analyses evaluated associations between these two measures and between each measure and sociodemographics, primary dialect, acculturation (using the Suinn-Lew Asian Self Identity Acculturation Scale), and health status (using the Short Form-8 Health Survey). RESULTS: Patients (n = 179) were 68.2 years on average; 55.9% were women, and 81.0% were non-English speaking (42.8% Cantonese, 15.2% Mandarin, 19.3% Toisanese, and 19.3% Fuzhounese). Most had low acculturation (mean 1.7/5.0) and highly-rated physical and mental health (mean 70.1/100 and 81.5/100, respectively). Few patients (15.1%) had an advance directive and 56.8% were unfamiliar with any type; 74.4% were willing to complete one in the future. Thirty-two percent "agreed" that "talking about death in the presence of a dying person would accelerate death". The analyses revealed no significant associations. CONCLUSION: These Chinese-American older adults had low acculturation and very limited knowledge of, or engagement in, ACP. Factors that may predict culturally-determined attitudes and beliefs about ACP were not identified. Further research can inform efforts to improve ACP engagement in this population.
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Planificación Anticipada de Atención , Emigrantes e Inmigrantes , Anciano , Asiático , Actitud , China , Estudios Transversales , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Ciudad de Nueva York , Estados UnidosRESUMEN
BACKGROUND: The harms associated with prescription opioid abuse have become a public health crisis. There is a need for evidence-based objective markers of the risk of opioid use disorder (OUD) in patients with pain receiving opioid treatment. The objective of this study was to evaluate the independent association of tobacco use and OUD in patients with chronic non-cancer pain. METHODS: This cross-sectional naturalistic study evaluated 798 adults ≥ 18 years with chronic non-cancer pain treated with long-term opioid therapy (≥ 6 months) who either developed an OUD (cases, n = 216) or displayed no evidence of an OUD (controls, n = 582). The primary outcome was presence of OUD. In addition to current self-reported tobacco use (primary predictor), covariates included demographics, pain severity, and psychiatric history. Data were collected between November 2012 and September 2018. RESULTS: Current tobacco use independently was strongly associated with OUD [odds ratio (OR) 14.0, 95 % confidence interval (CI) 9.5-20.6, p < 0.001], and this association remained significant after adjusting for other risk factors [adjusted odds ratio (aOR) 7.6, 95 % CI 4.8-12.2, p < 0.001]. Other factors associated independently with development of OUD included age, marital status, financial status, education and pain severity. CONCLUSIONS AND RELEVANCE: Current tobacco use is significantly associated with OUD in patients with chronic pain receiving long-term opioid therapy.
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Analgésicos Opioides/efectos adversos , Dolor Crónico/epidemiología , Trastornos Relacionados con Opioides/epidemiología , Manejo del Dolor/métodos , Uso de Tabaco/epidemiología , Población Blanca , Adulto , Anciano , Analgésicos Opioides/uso terapéutico , Dolor Crónico/tratamiento farmacológico , Dolor Crónico/psicología , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Trastornos Relacionados con Opioides/psicología , Manejo del Dolor/psicología , Factores de Riesgo , Uso de Tabaco/psicología , Uso de Tabaco/tendencias , Población Blanca/psicologíaRESUMEN
BACKGROUND: Novel models that improve generalist-level palliative care for cystic fibrosis (CF) are needed to address the burden of this illness. A screening-and-triage model has the potential to identify clinical problems requiring immediate follow-up by CF professionals. This study describes such a model and its immediate impact on care delivery for CF patients during a two-year period. METHODS: Eligible adults completed monthly online screening for sources of distress. If results revealed one or more "indicators of concern" on two consecutive screenings, this triggered an attempted triage by a social worker. Completed triages led to prompt follow-up by CF professionals for clinical problems, if indicated. Process data were summarized and generalized linear mixed models were used to evaluate baseline patient characteristics (symptom distress, quality of life, and sociodemographics) associated with the need for prompt follow-up. RESULTS: A total of 1,015 monthly surveys were completed by 74 patients; 634 (66 patients) had >1 indicators of concern; and 164 surveys (46 patients) had >1 indicators for two consecutive surveys (e.g., global distress, pain, dyspnea, and psychological symptoms). The 164 attempted triages yielded 84 completed triages (51.2%), of which 39 (46.4%) required prompt follow-up. In multivariable analyses, older patients and those with higher symptom distress at baseline were more likely to require prompt follow-up (p < .05). CONCLUSIONS: Web-based screening that assesses varied domains of distress or burden can identify a subset of CF patients whose clinical problems may benefit from immediate medical or psychological attention. Additional investigations should improve screening efficiency.
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Costo de Enfermedad , Fibrosis Quística , Tamizaje Masivo , Cuidados Paliativos , Calidad de Vida , Triaje/organización & administración , Adulto , Cuidados Posteriores/organización & administración , Cuidados Posteriores/normas , Fibrosis Quística/diagnóstico , Fibrosis Quística/fisiopatología , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Femenino , Médicos Generales , Humanos , Colaboración Intersectorial , Masculino , Tamizaje Masivo/métodos , Tamizaje Masivo/psicología , Modelos Organizacionales , New York , Cuidados Paliativos/métodos , Cuidados Paliativos/organización & administración , Cuidados Paliativos/psicología , Distrés Psicológico , Mejoramiento de la Calidad , Trabajadores Sociales , EspecializaciónRESUMEN
BACKGROUND: Institutional Special Needs Plans (I-SNPs) in nursing homes could impact hospice use by residents with advanced illness. Little is known about their relationship. OBJECTIVE: To determine whether I-SNP availability has been associated with changes in hospice utilization. DESIGN: Federal data from 2011 and 2013 were extracted from the Minimum Data Set (MDS) and other sources. Multilevel models evaluated I-SNP-, resident-, and facility-related variables as predictors of hospice utilization. SETTING: All US nursing homes in 2011 (N = 15 750) and 2013 (N = 15 732). PARTICIPANTS: Nursing home residents enrolled in Medicare or in both Medicare and Medicaid. MEASUREMENTS: Nursing home and resident data were obtained from Centers for Medicare and Medicaid Services sources: the MDS 3.0, Master Summary Beneficiary File, and Special Needs Plan Comprehensive Report. RESULTS: The mean number of residents per nursing home was 210.9 (SD = 167.1) in 2011 and 217.2 (SD = 171.5) in 2013. The prevalence of I-SNP contracts in nursing homes increased between 2011 and 2013, from 55.2% (N = 8691) to 61.1% (N = 9605), respectively (P < .001). In multivariate analyses, greater hospice enrollment in nursing homes was associated with having at least one I-SNP enrollee per month; year (2013 higher than 2011); smaller facility size; urban (vs rural) setting; location in the Northeast (vs Midwest); lower average resident mental status; higher average resident mobility; younger residents, on average; and facilities with higher proportions of residents with specific diagnoses (cancer, cirrhosis, and dementia). After adjusting for resident and nursing home characteristics, the association between monthly I-SNP presence and hospice enrollment was found only in nursing homes with 50 or greater beds and there was a positive relationship with increasing size. CONCLUSIONS: Growth of I-SNPs has been associated with changes in hospice utilization, and the relationship varies by facility size. Studies are needed to clarify the nature of this association and determine whether care may be improved through coordination of these programs. J Am Geriatr Soc 67:2537-2544, 2019.
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Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Medicaid/estadística & datos numéricos , Medicare/estadística & datos numéricos , Casas de Salud/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Femenino , Hospitales para Enfermos Terminales , Humanos , Masculino , Estudios Retrospectivos , Estados UnidosRESUMEN
BACKGROUND: Although smoking is prevalent among populations with opioid use disorder (OUD), few studies have examined electronic cigarette (EC) use in individuals seeking opioid agonist therapy (OAT). The aim of this study was to evaluate the prevalence and correlates of EC use among individuals seeking OAT. METHODS: 782 patients seeking OAT for OUD completed surveys assessing current and past EC use, reasons for use, current and past cigarette smoking, nicotine dependence, psychiatric distress, trauma, and pain. Bivariate and multivariate models evaluated correlates of daily EC use, past-30-day EC use, and current cigarette smoking. RESULTS: 6% of patients reported daily EC use, 18% reported past-30-day use, 62% reported EC use history, and 85% reported current cigarette smoking. 46% reported using ECs to quit or cut down smoking. In multivariate analyses, daily EC use was associated with higher odds of being a former smoker (OR 21; CI 1.7-273) and lower odds of ever smoking more than 100 cigarettes (OR 0.07; CI 0.01-0.32), while EC use in the past 30 days was associated with lower odds of being Caucasian (OR 0.55; CI 0.34-0.89), ever smoking more than 100 cigarettes (OR 0.13; CI 0.02-0.67), and history of chronic pain (OR 0.59; CI 0.38-0.90), and higher odds of reporting psychiatric distress (OR 1.5; CI 1.1-2.2). CONCLUSIONS: EC use is common among people with OUD who smoke cigarettes. Those with daily use had higher odds of being former smokers than current smokers. Interventions using ECs may be effective to help reduce harms and mortality in OUD.
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Sistemas Electrónicos de Liberación de Nicotina/estadística & datos numéricos , Tratamiento de Sustitución de Opiáceos/estadística & datos numéricos , Trastornos Relacionados con Opioides/psicología , Fumar Tabaco/epidemiología , Vapeo/epidemiología , Adulto , Buprenorfina/uso terapéutico , Femenino , Humanos , Masculino , Metadona/uso terapéutico , Persona de Mediana Edad , Oportunidad Relativa , Tratamiento de Sustitución de Opiáceos/psicología , Prevalencia , Encuestas y Cuestionarios , Fumar Tabaco/psicología , Tabaquismo/psicología , Vapeo/psicología , Población BlancaRESUMEN
The Opioid Risk Tool (ORT) is a commonly used measure of risk of aberrant drug-related behaviors in patients with chronic pain prescribed opioid therapy. In this study, the discriminant predictive validity of the ORT was evaluated in a unique cohort of patients with chronic nonmalignant pain (CNMP) on long-term opioid therapy who displayed no evidence of developing an opioid use disorder (OUD) and a sample of patients with CNMP who developed an OUD after commencing opioid therapy. Results revealed that the original ORT was able to discriminate between patients with and without OUDs (odds ratioâ¯=â¯1.624; 95% confidence interval [CI]â¯=â¯1.539-1.715, P < .001). A weighted ORT eliminating the gender-specific history of preadolescent sexual abuse item revealed comparable results (odds ratioâ¯=â¯1.648, 95% CIâ¯=â¯1.539-1.742, P < .001). A revised unweighted ORT removing the history of preadolescent sexual abuse item was notably superior in predicting the development of OUD in patients with CNMP on long-term opioid therapy (odds ratioâ¯=â¯3.085; 95% CIâ¯=â¯2.725-3.493; P < .001) with high specificity (.851; 95% CIâ¯=â¯.811-.885), sensitivity (.854; 95% CIâ¯=â¯.799-.898), positive predictive value (.757; 95% CIâ¯=â¯.709-.799), and negative predictive value (.914; 95% CIâ¯=â¯.885-.937). Perspective: The revised ORT is the first tool developed on a unique cohort to predict the risk of developing an OUD in patients with CNMP receiving opioid therapy, as opposed to aberrant drug-related behaviors that can reflect a number of other issues. The revised ORT has clinical usefulness in providing clinicians a simple, validated method to rapidly screen for the risk of developing OUD in patients on or being considered for opioid therapy.
Asunto(s)
Dolor Crónico/tratamiento farmacológico , Trastornos Relacionados con Opioides , Psicometría/instrumentación , Medición de Riesgo/métodos , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Numerous studies have characterized the pain reported by patients with advanced illness in terms of descriptors such as severity, but few have measured pain-related distress. Distress may be important in the clinical approach to pain. To evaluate pain-related distress among adult patients with advanced illness and pain following enrollment in an urban, specialist-level, community-based palliative care program. METHOD: In a retrospective cross-sectional analysis, data were extracted from the electronic health records of all patients who were able to complete the pain item from the Condensed Memorial Symptom Assessment Scale at the start of care. Bivariate and multivariate analyses evaluated the associations between distress and both sociodemographics and disease-related information. RESULTS: The 506 patients completing the pain item had a mean (SD) age of 70.7 years (13.8); 64.2% were women, 32.1% were Hispanic, 32.6% were white, and 27.7% were black. Of the 503 patients who indicated some level of distress on a 0-4 scale, 221 (43.7%) had high distress, defined as a score ≥3 ("quite a bit" or "very much"). Cancer diagnosis and poor performance status (unable to care for self) were predictors of high pain-related distress (both p < 0.05).Significance of resultsAmong patients with advanced illness who reported pain at the start of care by a specialist palliative care program, high pain-related distress was common, particularly among those with cancer or poor physical function. Further studies are needed to explore the extent to which pain-related distress should inform the assessment and management of pain.