RESUMO
BACKGROUND: The engagement of family caregivers in oncology is not universal or systematic. OBJECTIVE: We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. METHODS: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. RESULTS: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed "quite a bit" (n=1, 16.7%) or "very much" (n=3, 50%) that the system allowed them to provide better care. CONCLUSIONS: Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.
Assuntos
Neoplasias , Portais do Paciente , Humanos , Cuidadores , Sistema Porta , Oncologia , Neoplasias/terapiaRESUMO
Palliative care (PC) education is a vital and required part of hematology-oncology fellows' education to build PC skills, attitudes, and knowledge. However, previous research has shown that education in PC is inadequate. This narrative review of the literature on primary PC education during hematology-oncology fellowship programs aims at identifying the current state of PC education, existing gaps, and potential future directions for improving PC education. Fourteen articles were identified and reviewed. The types of articles included trainee and program leadership responses, and interventions designed to improve PC education. Results from each study are reported. Overall, trainees and program leadership rate current PC education as varied, often inadequate, and in need of improvement. Educational interventions show that some form of PC education increases perceived knowledge and confidence in PC skills. Future studies are needed to develop the most effective and impactful educational models.
Assuntos
Hematologia , Cuidados Paliativos , Humanos , Educação de Pós-Graduação em Medicina , Bolsas de Estudo , Oncologia/educação , Hematologia/educaçãoRESUMO
Medicaid, the nation's health care safety net, has come under increasing pressure as most state governments face a fiscal crisis. Cutbacks in funding that decrease already inadequate reimbursement, the tightening of eligibility, and a reduction of benefits will lead to an increase in the under- and uninsured, further straining the ability of hospitals to remain solvent and provide care to this vulnerable population. The federal government must increase funding to the Medicaid program and the Medicaid hospital disproportionate share while state governments must continue a level of funding that will not cause a loss of federal matching funds. Both state and federal governments must be held accountable for providing the necessary financial support to providers through the Medicaid program so that they can continue to serve their nearly 51 million poor, disabled, and elderly patients.