Current State of Hospice Care for Children in North Carolina (754)

Current State of Hospice Care for Children in North Carolina (754)

Vol. 41 No. 1 January 2011 Schedule with Abstracts (Zarit Burden Inventory) and satisfaction (FAMCARE) surveys during the same timeframe. Results fr...

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Vol. 41 No. 1 January 2011

Schedule with Abstracts

(Zarit Burden Inventory) and satisfaction (FAMCARE) surveys during the same timeframe. Results from the first 4 months of follow-up were analyzed with paired t-tests. Results. Among 24 eligible patients, 18 patients (75%) and 12 family caregivers completed the baseline assessment. Three patients (17%) died and 2 (11%) dropped-out prior to the 2-month survey. Thirteen (72%) await completion of scheduled assessments. To date, 11 patients have completed the 2-month assessment and 8 the 4-month. Most patients were male (83%), married (67%), Christian (72%), and with a history of smoking (50%). Baseline pain and fatigue were mild and there was no significant change over 4 months. Two patients (11%) developed borderline depression by 4 months. However, overall, there were no statistically significant changes in mood over time. Spiritual well-being, quality of life, and patient satisfaction at 4 months showed no change. There was no change in caregiver burden or satisfaction at 4 months compared to baseline. Conclusion. These preliminary data demonstrate that patients undergoing cystectomy for bladder cancer generally have mild symptoms that do not remit with usual care over the first 4 months post-operatively. Family caregiver burden remains stable. Persistence of these findings at 6 months will be assessed. Implications for research, policy, or practice. Research is needed to investigate the potential benefits of outpatient palliative care offered concurrently with usual surgical/oncologic care for bladder cancer.

Current State of Hospice Care for Children in North Carolina (754) Ana Milena Sanchez Varela, MD MPH, University of North Carolina, Chapel Hill, NC. Allison Deal, MS, University of North Carolina Lineberger Comprehensive Cancer Center, Chapel Hill, NC. Elisabeth Dellon, MD MPH, University of North Carolina, Chapel Hill, NC. Laura Hanson, MD MPH, University of North Carolina, Chapel Hill, NC. Stuart Gold, MD, University of North Carolina, Chapel Hill, NC. Julie Blatt, MD, University of North Carolina, Chapel Hill, NC. (All speakers have disclosed no relevant financial relationships.)

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Objectives 1. Describe the current state of hospice care for children in North Carolina. 2. Describe perceived barriers to hospice care for children among hospice care providers. Background. Despite improving organization of hospice services for children with life-limiting illnesses, few dying children receive these services. Research objectives. We examined the current capacity of pediatric hospice across North Carolina and identified barriers to provision of hospice services. Methods. Representatives of all 76 existing North Carolina hospice agencies were asked to complete an online survey about their offered pediatric services. Results. Representatives of 61 agencies responded (80%). Hospices were a mix of freestanding (60%), hospital (18%), home health (20%), and nursing home (2%) based. Most are not-for-profit (82%), serve rural (54%) or a mix of rural and urban locations (42%), have been in existence for more than 20 years (77%), provide care at home (92%), offer inpatient care (69%), pastoral care (92%), respite (84%), interpreter (69%), and bereavement services (93%). Twenty six (43%) currently serve children. Hospices serving versus those not serving children differed in their reports of several barriers to care: 1) lack of trained staff to provide pediatric care (8% versus 42%, p ¼ 0.01); 2) lack of availability of pediatric physician consultation (23% versus 50%, p ¼ 0.03); 3) lack of pediatric pharmacy consultation (4% versus 32%, p ¼ 0.006), and inconsistent plan of care between pediatrician and hospice (12% versus 47%, p ¼ 0.01). Respondents from both types of agencies felt that lack of pediatric referrals (78%) and families wanting to continue curative therapies while receiving hospice care (77%) were important or very important barriers. Conclusion. Representatives of NC hospices perceive curative intent and lack of referral as major barriers to pediatric care. Education for pediatric providers about hospice is important to ensure that children with life-limiting illnesses have adequate access to available services. Implications for research, policy, or practice. A new model that blends disease-specific treatment with hospice may fit expectations of families of children with life-limiting illnesses and may allow for better access to hospice services.