Around the globe, health care costs continue to rise resulting in the emphasis on allocating scarce resources toward interventions that have been found to be cost- and clinically effective. Palliative care is no exception, yet the science of outcomes measurement in palliative care, and especially in pediatric palliative care, lags behind other disciplines. National and international experts and organizations have recognized the importance of outcomes measurement and have included this as a research priority. This article outlines some of the complexities of measuring outcomes in pediatric palliative care. It is recommended that national and international collaborations include representatives of the pediatric palliative care community.
National Institute for Health and Clinical Excellence.Guidance on Cancer Services: Improving Outcomes in Children and Young People With Cancer. Analysis of the Potential Economic Impact and Guidance. Bangor, Wales: National Health Service; 2005.
2.
Campbell DE, Lynn J., Louis TA, Shugarman LRMedicare program expenditures associated with hospice use. Ann Intern Med. 2004;140(4):269-277.
3.
Emanuel EJ, Ash A., Yu W., et al. Managed care, hospice use, site of death, and medical expenditures in the last year of life. Arch Intern Med. 2002;162(15):1722-1728.
4.
Pyenson B., Connor S., Fitch K., Kinzbrunner B.Medicare cost in matched hospice and non-hospice cohorts. J Pain Symptom Manage. 2004;28(3):200-210.
5.
Taylor DH Jr.The effect of hospice on Medicare and informal care costs: the U.S. experience. J Pain Symptom Manage.2009;38(1): 110-114.
6.
Lo JCThe impact of hospices on health care expenditures-the case of Taiwan. Soc Sci Med. 2002;54(6):981-991.
7.
Feudtner C., Hays RM, Haynes G., Geyer JR, Neff JM, Koepsell TDDeaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics . 2001;107(6):E99.
8.
Feudtner C., Hexem KR, Shabbout M., Feinstein JA, Sochalski J., Silber JHPrediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study. J Palliat Med. 2009;12(2):160-169.
9.
Feudtner C., Silveira MJ, Christakis DAWhere do children with complex chronic conditions die? Patterns in Washington State, 1980-1998. Pediatrics. 2002;109(4):656-660.
10.
Feudtner C. , Silveira MJ, Shabbout M., Hoskins REDistance from home when death occurs: a population-based study of Washington State, 1989-2002. Pediatrics. 2006;117(5): e932-e939.
11.
Feudtner C. , DiGiuseppe DL, Neff JMHospital care for children and young adults in the last year of life: a population-based study. BMC Med . 2003;1:3.
12.
Knapp CA, Thompson LA, Vogel WB, Madden VL, Shenkman EADeveloping a pediatric palliative care program: addressing the lack of baseline expenditure information. Am J Hosp Palliat Care. 2009;26(1):40-46.
13.
Knapp CA, Shenkman EA, Marcu MI, Madden VL, Terza JVPediatric palliative care: describing hospice users and identifying factors that affect hospice expenditures. J Palliat Med.2009; 12(3):223-229.
14.
Basu A., Polsky D., Manning W.Use of propensity scores in non-linear models: the case for health care expenditures . NBER Working Paper No. 14086; 2008.
15.
Varni JW, Burwinkle TM, Seid M.The PedsQL as a pediatric patient-reported outcome: reliability and validity of the PedsQL Measurement Model in 25,000 children. Expert Rev Pharmacoecon Outcomes Res.2005;5(6):705-719.
16.
Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N.The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. J Behav Med. 2004;27(3):297-318.
17.
Varni JW, Burwinkle TM, Katz ER, Meeske K., Dickinson P.The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94(7): 2090-2106.
18.
Varni JW, Burwinkle TM, Berrin SJ, et al. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Dev Med Child Neurol. 2006;48(6):442-449.
19.
Varni JW, Burwinkle TM, Szer ISThe PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity. J Rheumatol. 2004;31(12):2494-2500.
20.
Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M., Kaufman F., Jones KLThe PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and type 1 Diabetes Module. Diabetes Care. 2003; 26(3):631-637.
21.
Hays R., Valentine J., Haynes G., et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med. 2006;9(3):716-728.
22.
Huang IC, Shenkman EA, Madden VL, Vadaparampil S., Quinn G., Knapp CAMeasuring quality of life in pediatric palliative care: challenges and potential solutions. Palliat Med. In press.
23.
Jordhoy MS, Inger Ringdal G., Helbostad JL, Oldervoll L., Loge JH, Kaasa S.Assessing physical functioning: a systematic review of quality of life measures developed for use in palliative care. Palliat Med.2007;21(8):673-682.
24.
Mularski RA, Dy SM, Shugarman LR, et al. A systematic review of measures of end-of-life care and its outcomes. Health Serv Res. 2007;42(5):1848-1870.
25.
Hays R., Morales L., Reise S.Item response theory and health outcomes measurement in the 21st century. Med Care.2000;38(9S): 1128-1142.
26.
Patient-Reported Outcomes Measurement Information System (PROMIS). http://www.nihpromis.org/default.aspx. Accessed January 28, 2009.
27.
EuroQol Group.EQ-5D: a standardized instrument for use as a measure of health outcome. http://www.euroqol.org/ . Accessed January 28, 2009.
28.
Feeny D., Furlong W., Barr RDMultiattribute approach to the assessment of health-related quality of life: Health Utilities Index. Med Pediatr Oncol. 1998;(suppl 1):54-59.
29.
Gomes B., Harding R., Foley KM, Higginson IJOptimal approaches to the health economics of palliative care: report of an international think tank. J Pain Symptom Manage.2009;38(1):4-10.
30.
Normand C.Measuring outcomes in palliative care: limitations of QALYs and the road to PalYs. J Pain Symptom Manage.2009; 38(1):27-31.
31.
Powell RA, Downing J., Harding R., Mwangi-Powell F., Connor S.Development of the APCA African Palliative Outcome Scale. J Pain Symptom Manage.2007;33(2):229-232.
32.
National Hospice and Palliative Care Organization.Standards for Pediatric and Hospice Care Advancing Care for America’s Children. Alexandria, VA: National Hospice and Palliative Care Organization;2009.
33.
Higginson IJ , Foley KMPalliative care: no longer a luxury but a necessity?J Pain Symptom Manage.2009;38(1):1-3.
