RESUMO
Background: Patients with high-grade glioma have high palliative care needs, yet few receive palliative care consultation. This study aims to explore themes on (1) benefits of primary (delivered by neuro-oncologists) and specialty palliative care (SPC) and (2) barriers to SPC referral, according to a diverse sample of clinicians. Methods: From September 2021 to May 2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semistructured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by 2 investigators. A qualitative, phenomenological approach to thematic analysis was used. Results: Regarding primary palliative care, (1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management and (2) the neuro-oncology clinic is glioma patients' medical home. Regarding SPC, (1) palliative specialists' approach is beneficial even without disease-specific expertise; (2) palliative specialists have time to comprehensively address palliative needs; and (3) earlier SPC enhances its benefits. For referral barriers, (1) appointment burden can be mitigated with telehealth, home-based, and embedded palliative care; (2) heightened stigma associating SPC with hospice in a population with high death anxiety can be mitigated with earlier referral to promote rapport-building; and (3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing nonneurologic symptoms, coping support, and anticipatory guidance. Conclusions: These themes emphasize the central role of neuro-oncologists in addressing palliative care needs in glioma, without obviating the need for or benefits of SPC. Tailored models may be needed to optimize the balance of primary and specialty palliative care in glioma.
RESUMO
CONTEXT: Early palliative care referral is recommended broadly in oncology. Yet, few patients with high-grade gliomas (HGG) - highly aggressive brain tumors - receive specialty palliative care consultation. OBJECTIVES: To delineate unique needs of HGG patients relative to other oncology patients according to perceptions of a diverse sample of US palliative medicine physicians and neuro-oncologists in each of the eight domains of palliative care; and to describe contrasts between physician specialties on indications for and timing of specialty palliative care referrals in HGG. METHODS: Between September 2021 and May 2023, we conducted semi-structured, 40-minute interviews with ten palliative medicine physicians and ten neuro-oncologists. Participants were recruited via purposive sampling for diversity in geographic setting, years in practice, and practice structure. Interviews were audio-recorded, professionally transcribed, and coded by two investigators. Data were analyzed thematically using a qualitative, phenomenological approach. RESULTS: The palliative care needs of HGG relative to other cancers across palliative care domains are distinguished by poor prognosis, physical and cognitive deficits, and neuropsychiatric symptoms. Themes on indications for palliative care referral differed between neuro-oncologists and palliative physicians. Neuro-oncologists favored selective referral for clinical indications such as high non-neurologic symptom burden requiring time-intensive management. Palliative physicians favored early referral of most HGG patients, to allow for maximal benefit across HGG trajectory. CONCLUSION: Patients with HGG have unique palliative care needs that affect palliative care delivery across care domains. Bidirectional education, enhanced collaboration, and consensus guidelines may help overcome barriers to specialty palliative care referral.
RESUMO
Purpose: To test the feasibility of a novel self-management support intervention for people with chronic obstructive pulmonary disease (COPD). Methods: We conducted a feasibility randomized controlled trial involving patients ≥40 years with severe or very severe COPD in New York, New York (n=59). Community health workers screened patients and addressed barriers to COPD self-management. Patients were also offered home-based pulmonary rehabilitation (HBPR) and an antibiotic and steroid rescue pack. Control patients received general COPD education. Clinical outcomes for intervention and control were compared by difference-in-differences (DiD) at baseline and 6 months. The study was not powered for statistically significant differences for any measure. Feasibility measures were collected at 6 months. Results: There were high rates of completion of intervention activities, including 75% of patients undergoing evaluation for and participating in HBPR. Most (92%) intervention patients said the program was very or extremely helpful and 96% said they would participate again. Clinical outcomes generally favored the intervention: COPD assessment test, DiD -1.1 (95% confidence interval [CI] -5.9 to 3.6); 6-minute walk test distance, DiD 7.4 meters (95% CI -45.1 to 59.8); self-reported hospitalizations, DiD -9.8% (95% CI -42.3% to 22.8%); medication adherence, DiD 7.7% (-29.6%, 45.0%), and Physical Activity Adult Questionnaire, DiD 86 (95% CI -283 to 455). Intervention patients reported more emergency department visits, DiD 10.6% (95% CI 17.7% to 38.8%). Conclusions: A highly patient-centered, self-management support intervention for people with COPD was well received by patients and associated with potential improvements in clinical and self-management outcomes. A fully powered study of the intervention is warranted.