Original Article
Comparison between Rural and Urban Appalachian Children in Hospice Care
Abstract
Objective: The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia.Methods: Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means.
Results: Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice.
Conclusions: Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.
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References
1. Keim-Malpass J, Cozad MJ, Svynarenko R, et al. Medical complexity and concurrent hospice care: a national study of Medicaid children from 2011 to 2013. J Spec Pediatr Nurs 2021;26:e12333.
2. Lindley LC, Cohrs AC, Keim-Malpass J, et al. Children enrolled in hospice care under commercial insurance: a comparison of different age groups. Am J Hosp Palliat Med 2019;36:123–129.
3. Murphy SL, Mathews TJ, Martin JA, et al. Annual summary of vital statistics: 2013–2014. Pediatrics 2017;139:e20163239.
4. Lindley LC, Keim-Malpass J. Quality of paediatric hospice care for children with and without multiple complex chronic conditions. Int J Palliat Nurs 2017;23:230–237.
5. Boyden JY, Curley MAQ, Deatrick JA, et al. Factors associated with the use of U.S. community-based palliative care for children with life-limiting or life-threatening illnesses and their families: an integrative review. J Pain Symptom Manage 2018;55:117–131.
6. Feudtner C, Villareale NL, Morray B, et al. Technology-dependency among patients discharged from a children’s hospital: a retrospective cohort study. BMC Pediatr 2005;5:8.
7. Mixer SJ, Fornehed ML, Varney J, et al. Culturally congruent end-of-life care for rural Appalachian people and their families. J Hosp Palliat Nurs 2014; 16:526–535.
8. Lindley LC, Edwards SL. Geographic access to hospice care for children with cancer in Tennessee, 2009 to 2011. Am J Hosp Palliat Med 2015;32: 849–854.
9. Marshall JL, Thomas L, Lane NM, et al. Creating a culture of health in Appalachia. Disparities and bright spots. Health disparities in Appalachia. https://www.arc.gov/wp-content/uploads/2020/06/Health_Disparities_in_ Appalachia_August_2017.pdf. Published 2017. Accessed July 28, 2021.
10. Wang L, Slawson DL, Relyea G, et al. Prevalence of and risk factors for adolescent obesity in southern Appalachia, 2012. Prev Chronic Dis 2014; 11:E222.
11. Lane NM, Lutz AY, Baker K, et al. Health care costs and access disparities in Appalachia. https://www.arc.gov/wp-content/uploads/2020/ 06/HealthCareCostsandAccessDisparitiesinAppalachia.pdf. Published 2012. Accessed July 28, 2021.
12. Campbell CL, Merwin E, Yan G. Factors that influence the presence of a hospice in a rural community. J Nurs Scholarsh 2009;41:420–428.
13. Medicare Payment Advisory Commission (MEDPAC). Report to the Congress: Medicare payment policy. https://www.medpac.gov/document/ http-www-medpac-gov-docs-default-source-reports-mar20_entirereport_ sec-pdf. Published 2020. Accessed February 24, 2021.
14. Robinson CA, Pesut B, Bottorff JL, et al. Rural palliative care: a comprehensive review. J Palliat Med 2009;12:253–258.
15. Holmes GM, Kaufman BG, Pink GH. Predicting financial distress and closure in rural hospitals. J Rural Health 2017;33:239–249.
16. Lynch S. Hospice and palliative care access issues in rural areas. Am J Hosp Palliat Med 2013;30:172–177.
17. Fornehed MLC, Mixer SJ, Lindley LC. Families’ decision making at end of life in rural Appalachia. J Hosp Palliat Nurs 2020;22:188–195.
18. Battista V, Santucci G. Pediatric Palliative Care across the Continuum. Vol 1. New York: Oxford University Press; 2017.
19. Appalachian Regional Commission. Appalachian counties served by ARC. https://www.arc.gov/appalachian-counties-served-by-arc. Published 2020. Accessed July 28, 2021.
20. Ruttner L, Borck R, Nysenbaum J, et al. Medicaid policy brief: guide to MAX data. Math Policy Res Brief 2015;21:1–10.
21. Health Resources & Services Administration. Defining rural population. https://www.hrsa.gov/rural-health/about-us/definition/index.html. Updated January 2021. Accessed February 11, 2021.
22. Svynarenko R, Lindley L. Defining rurality in hospice research: evaluation of common measures. J Health Care Poor Underserved 2021;32:2167–2180.
23. Feudtner C, Feinstein JA, Zhong W, et al. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr 2014;14:199.
24. Lindley LC, Mack JW, Bruce DJ. Clusters of multiple complex chronic conditions: a latent class analysis of children at end of life. J Pain Symptom Manage 2016;51:868–874.
25. Garfield LD, Brown DS, Allaire BT, et al. Psychotropic drug use among preschool children in the Medicaid program from 36 states. Am J Public Health 2015;105:524–529.
26. Miller EG, LaRagione G, Kang TI, et al. Concurrent care for the medically complex child: lessons of implementation. J Palliat Med 2012;15:1281–1283.
27. Lindley LC, Richar CS, Hoit T, et al. Cost of pediatric concurrent hospice care: an economic analysis of relevant cost components, review of the literature, and case illustration. J Palliat Med 2021;24:1291–1298.
28. Lindley LC, Cozad MJ, Mack JW, et al. Effectiveness of pediatric concurrent hospice care to improve continuity of care. Qual Manag Health Care 2021; DOI: 10.1177.10499091211056039.
29. Amirnovin R, Aghamohammadi S, Riley C, et al. Analysis of a pediatric home mechanical ventilator population. Respir Care 2018;63:558–564.
30. Appalachian Regional Commission. Appalachia then and now: examining changes to the Appalachian region since 1965. https://www.arc.gov/wp-content/uploads/2020/06/AppalachiaThenAndNowCompiledReports.pdf. Published February 2015. Accessed July 28, 2021.
31. Health Resources & Services Administration. MUA find. https://data.hrsa. gov/tools/shortage-area/mua-find. Published 2020. Accessed July 28, 2021.
32. Hill SK, Cantrell P, Edwards J, et al. Factors influencing mental health screening and treatment among women in a rural South Central Appalachian primary care clinic. J Rural Health 2016;32:82–91.
33. Mixer SJ, Fornehed MLC. People of Appalachian heritage. In: Purnell LD, Fenkl EA, eds. Textbook for Transcultural Health Care: A Population Approach. New York: Springer; 2021:217–250.
