PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
Authors: Meaghann S Weaver; Katherine E Heinze; Cynthia J Bell; Lori Wiener; Amy M Garee; Katherine P Kelly; Robert L Casey; Anne Watson; Pamela S Hinds Journal: Palliat Med Date: 2015-04-28 Impact factor: 4.762
Authors: Ardith Doorenbos; Taryn Lindhorst; Helene Starks; Eugene Aisenberg; J Randall Curtis; Ross Hays Journal: J Soc Work End Life Palliat Care Date: 2012
Authors: Claire A Richards; Helene Starks; M Rebecca O'Connor; Erica Bourget; Taryn Lindhorst; Ross Hays; Ardith Z Doorenbos Journal: Am J Hosp Palliat Care Date: 2017-11-27 Impact factor: 2.500
Authors: Deena R Levine; Erik Liederbach; Liza-Marie Johnson; Erica C Kaye; Holly Spraker-Perlman; Belinda Mandrell; Michele Pritchard; April Sykes; Zhaohua Lu; Dave Wendler; Justin N Baker Journal: Cancer Date: 2019-01-02 Impact factor: 6.860
Authors: I-Chan Huang; Elizabeth A Shenkman; Vanessa L Madden; Susan Vadaparampil; Gwendolyn Quinn; Caprice A Knapp Journal: Palliat Med Date: 2009-12-10 Impact factor: 4.762