RESUMO
People living with cystic fibrosis (PLwCF) experience high symptom burden. 146 clinicians completed online surveys regarding barriers and solutions to symptom management between September and October 2020. The surveys contained both closed-ended and free-text entries. The symptom management specialists that CF clinicians most wished to consult included mental health (88, 65%), palliative care (59, 41%), and pain specialists (48, 33%). Barriers to symptom management included concerns about controlled substances prescribed for symptom control causing addiction and precluding transplantation, a lack of trust and collaboration among clinical specialties, a lack of symptom management specialists with CF expertise, and a worry about the affordability of specialist-level symptom management care. Potential solutions included non-pharmacological approaches, expanding access to affordable specialist symptom management care, the creation of clinical care guidelines for symptom management in CF, and having CF clinicians and symptom management specialists work alongside each other in CF clinic to build interdisciplinary trust and education.
Assuntos
Fibrose Cística , Cuidados Paliativos , Humanos , Fibrose Cística/diagnóstico , Fibrose Cística/terapia , Saúde Mental , Inquéritos e Questionários , Custos e Análise de CustoRESUMO
BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.
Assuntos
Fibrose Cística , Insuficiência Cardíaca , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Custos de Cuidados de Saúde , Insuficiência Cardíaca/terapiaRESUMO
This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state. Adults aging solo were significantly more likely to identify non-child/spouse family, friends, neighbors and paid aides as part of their social networks. Their sources of unpaid help included siblings (33%), friends (32%), and non-family (e.g., neighbors (23%)). Adults aging solo were more likely to use paid caregivers, despite having lower incomes than married peers. Interventions to support adults aging solo should incorporate diverse social/help networks.
Assuntos
Atividades Cotidianas , Vida Independente , Humanos , Idoso , Estados Unidos , Medicare , Envelhecimento , CuidadoresRESUMO
BACKGROUND: Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms. METHODS: PLwCF completed online questionnaires assessing symptom prevalence and distress and were also asked about experiences accessing pain and symptom treatment, using both closed-ended and free-text entries. RESULTS: Pain was the most prevalent symptom experienced among the 55 participants (76%) and the symptom that most commonly caused distress (64%). PLwCF not on CFTR modulator therapy were likelier to endorse pain as distressing (p = 0.007). Respondents expressed that their pain was commonly underrecognized and undermanaged, they desired a multi-modal approach to treatment, and noted concerns about disease progression affecting their symptom management options. CONCLUSIONS: Our study suggests that PLwCF often have unmet symptom management needs that may impair quality of life.