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From the National Initiative for Children’s Healthcare Quality, Boston, MA.
This month JCOM launches a series calling attention to 5 teams working to improve care for individuals with sickle cell disease and sickle cell trait in the Hemoglobinopathy Learning Collaborative (—Ed.)
Sickle cell disease affects close to 100,000 people in United States [1]. This condition is characterized by chronic anemia and unpredictable pain episodes beginning in early childhood and leading to changes in functioning, diminished health-related quality of life, end-organ damage, increased health care use, and in some cases early mortality [2–5]. Sickle cell disease is identified through universal newborn screening [6] and is found in one in 2474 newborn Americans [7], with Americans of African ancestry most frequently affected. It is estimated that over 2 million Americans are genetic carriers of the sickle cell gene.
Although there have been major advancements in sickle cell care within the past several decades, there still exist significant variations in care and mortality [8–14]. Ongoing strategies to improve patient access to efficacious treatments are essential to improve outcomes for individuals with sickle cell disease.
Recognizing the compelling need for a focused national effort to improve care for this population and the relative lack of private resources committed to it [15], Congress established 2 federal programs to enhance newborn screening and improve follow-up and care and outcomes for this population: the Sickle Cell Disease Newborn Screening Program in 2002 [16] and the Sickle Cell Disease Treatment Demonstration Program in 2004 [17]. The programs are funded by the Health Resources and Services Administration and administered by the National Initiative for Children’s Healthcare Quality (NICHQ)’s Working to Improve Sickle Cell Healthcare (WISCH) program [2]. NICHQ became the coordinating center for the programs in 2011 and 2010, respectively. Diverse grantees are now working together in a Hemoglobinopathy Learning Collaborative, coordinated and facilitated by NICHQ and its partners Boston Medical Center and the Sickle Cell Disease Association of America. The current rounds of funding continue through 2014 for the Sickle Cell Disease Treatment Demonstration Program and 2015 for the Sickle Cell Disease Newborn Screening Program.
The Hemoglobinopathy Learning Collaborative grantees are developing strategies that will result in more coordinated and appropriate care in order that individuals with sickle cell disease experience fewer complications, acute care visits, and hospitalizations; enhanced quality of life; and more compassionate and respectful treatment from the health care system. Processes are also being developed to ensure that individuals screened for sickle cell disease and sickle cell trait receive genetic counseling, education and appropriate follow-up care for their condition. The aims of the collaborative are aligned with the national quality strategy of the Triple Aim—better care, better health, and lower overall health care costs [18]. The strategies and approaches developed and tested by the teams will be disseminated to the broader sickle cell community for use in the treatment and management of individuals with sickle cell disease.
The Hemoglobinopathy Learning Collaborative’s approach is based on the structure of the Breakthrough Series Learning Collaborative [19–21], a model championed by the Institute for Healthcare Improvement that brings together health care organizations that share a commitment to making major, rapid changes in order to produce breakthrough improvements in quality. Using a process known as the Model for Improvement [22], the teams develop ideas for changes, test small-scale changes using Plan-Do-Study-Act (PDSA) cycles, and measure to determine if the changes are leading to improvement. This method can quickly identify promising ideas and adapt and develop them to into robust, reliable standard processes [2].
There are 15 improvement teams working on quality improvement projects focused on improving acute care management, provision of recommended care, transition, self-management, provider education, and screening, counseling, and education for individuals with SCD and SCT. The 5 articles in this special series span these major content areas, from improving outcomes in the emergency department using standardized order sets to assessing the readiness of adolescents to transition to adult care, to using health information technology to improve care coordination, to developing a home pain management plan, and to using patient navigators to help coordinate care and resources. The series begins with the article by Treadwell et al in this issue and will continue for the next several months. The WISCH teams will serve as leaders for sustainable and positive change for treatment of individuals with sickle cell disease and sickle cell trait in the United States. Their work is an important step towards transforming care for people with sickle cell disease, so that each person with sickle cell disease will receive the highest quality of care throughout their lifespan.
Corresponding author: Suzette Oyeku, MD, MPH, Children’s Hospital at Montefiore/Albert Einstein College of Medicine, 3444 Kossuth Ave, 1st Fl, Bronx, NY 10467, [email protected].
1. Brousseau DC, Panepinto JA, Nimmer M, et al. The number of people with sickle cell disease in the United States: national and state estimates. Am J Hematol 2010;85:77–8.
2. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34-48.
3. Davis H, Moore RM Jr, Gergen PJ. Cost of hospitalizations associated with sickle cell disease in the United States. Public Health Rep 1997;112:40–3.
4. Panepinto JA. Health-related quality of life in sickle cell disease. Pediatr Blood Cancer 2008;51:5–9.
5. Steiner CA, Miller JL. Sickle cell disease patients in U.S. hospitals, 2004. In: Healthcare cost and utilization project statistical briefs. Rockville, MD: Agency for Healthcare Research and Quality; 2006.
6. National Newborn Screening & Global Resource Center. National newborn screening status report, 6 Jan 2013. Available at http://genes-r-us.uthscsa.edu/sites/genes-r-us/files/nbsdisorders.pdf.
7. Therrell BL, Hannon WH. National evaluation of US newborn screening system components. Mental Retard Dev Disabil Res Rev 2006;12:236–45.
8. Davis H, Schoendorf KC, Gergen PJ, et al. National trends in the mortality of children with sickle cell disease, 1968 through 1992. Am J Public Health 1997;87:1317–22.
9. Davis H, Gergen PJ, Moore RM Jr. Geographic differences in mortality of young children with sickle cell disease in the United States. Public Health Rep 1997;112:52–8.
10. Hamideh D, Alvarez O. Sickle cell disease related mortality in the United States (1999-2009). Pediatr Blood Cancer 2013;60:1482–6.
11. Brawley OW, Cornelius LJ, Edwards LR, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med 2008;148:932–8.
12. Raphael JL, Rattler TL, Kowalkowski MA, et al. The medical home experience among children with sickle cell disease. Pediatr Blood Cancer 2013;60:275–80.
13. Todd KH, Green C, Bonham VL, et al. Sickle cell disease related pain: crisis conflict. J Pain 2006;7:453–8.
14. Glassberg JA, Tanabe P, Chow A, et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med 2013;62:293–302.
15. Smith LA, Oyeku SO, Homer C, Zuckerman B. Sickle cell disease: a question of equity and quality. Pediatrics 2006;117:1763–70.
16. 107th Congress of the United States. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Act, 2002 (H.R. 3061.RH). Available at www.gpo.gov/fdsys/pkg/BILLS-107hr3061rh/pdf/BILLS-107hr3061rh.pdf.
17. 108th Congress of the United States. American Jobs Creation Act of 2004 (H.R. 4520). Available at http://thomas.loc.gov/cgi-bin/bdquery/z?d108:H.R.4520.
18. U.S. Department of Health and Human Services. Report to Congress: national strategy for quality improvement in health care. Washington, DC: U.S. Department of Health and Human Services; 2011. Available at www.healthcare.gov/law/resources /reports/quality03212011a.html.
19. Kilo CM. Improving care through collaboration. Pediatrics 1999;103(1 Suppl E):384–93.
20. Institute for Healthcare Improvement. The breakthrough series: IHI’s collaborative model for achieving breakthrough improvement. Boston: Institute for Healthcare Improvement; 2003.
21. Wagner EH, Glasgow RE, Davis C, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Improv 2001;27:63–80.
22. Langley GJ, Nolan KM, Norman CL, et al. The improvement guide: a practical approach to enhancing organizational performance. San Francisco: Jossey-Bass; 1996.
From the National Initiative for Children’s Healthcare Quality, Boston, MA.
This month JCOM launches a series calling attention to 5 teams working to improve care for individuals with sickle cell disease and sickle cell trait in the Hemoglobinopathy Learning Collaborative (—Ed.)
Sickle cell disease affects close to 100,000 people in United States [1]. This condition is characterized by chronic anemia and unpredictable pain episodes beginning in early childhood and leading to changes in functioning, diminished health-related quality of life, end-organ damage, increased health care use, and in some cases early mortality [2–5]. Sickle cell disease is identified through universal newborn screening [6] and is found in one in 2474 newborn Americans [7], with Americans of African ancestry most frequently affected. It is estimated that over 2 million Americans are genetic carriers of the sickle cell gene.
Although there have been major advancements in sickle cell care within the past several decades, there still exist significant variations in care and mortality [8–14]. Ongoing strategies to improve patient access to efficacious treatments are essential to improve outcomes for individuals with sickle cell disease.
Recognizing the compelling need for a focused national effort to improve care for this population and the relative lack of private resources committed to it [15], Congress established 2 federal programs to enhance newborn screening and improve follow-up and care and outcomes for this population: the Sickle Cell Disease Newborn Screening Program in 2002 [16] and the Sickle Cell Disease Treatment Demonstration Program in 2004 [17]. The programs are funded by the Health Resources and Services Administration and administered by the National Initiative for Children’s Healthcare Quality (NICHQ)’s Working to Improve Sickle Cell Healthcare (WISCH) program [2]. NICHQ became the coordinating center for the programs in 2011 and 2010, respectively. Diverse grantees are now working together in a Hemoglobinopathy Learning Collaborative, coordinated and facilitated by NICHQ and its partners Boston Medical Center and the Sickle Cell Disease Association of America. The current rounds of funding continue through 2014 for the Sickle Cell Disease Treatment Demonstration Program and 2015 for the Sickle Cell Disease Newborn Screening Program.
The Hemoglobinopathy Learning Collaborative grantees are developing strategies that will result in more coordinated and appropriate care in order that individuals with sickle cell disease experience fewer complications, acute care visits, and hospitalizations; enhanced quality of life; and more compassionate and respectful treatment from the health care system. Processes are also being developed to ensure that individuals screened for sickle cell disease and sickle cell trait receive genetic counseling, education and appropriate follow-up care for their condition. The aims of the collaborative are aligned with the national quality strategy of the Triple Aim—better care, better health, and lower overall health care costs [18]. The strategies and approaches developed and tested by the teams will be disseminated to the broader sickle cell community for use in the treatment and management of individuals with sickle cell disease.
The Hemoglobinopathy Learning Collaborative’s approach is based on the structure of the Breakthrough Series Learning Collaborative [19–21], a model championed by the Institute for Healthcare Improvement that brings together health care organizations that share a commitment to making major, rapid changes in order to produce breakthrough improvements in quality. Using a process known as the Model for Improvement [22], the teams develop ideas for changes, test small-scale changes using Plan-Do-Study-Act (PDSA) cycles, and measure to determine if the changes are leading to improvement. This method can quickly identify promising ideas and adapt and develop them to into robust, reliable standard processes [2].
There are 15 improvement teams working on quality improvement projects focused on improving acute care management, provision of recommended care, transition, self-management, provider education, and screening, counseling, and education for individuals with SCD and SCT. The 5 articles in this special series span these major content areas, from improving outcomes in the emergency department using standardized order sets to assessing the readiness of adolescents to transition to adult care, to using health information technology to improve care coordination, to developing a home pain management plan, and to using patient navigators to help coordinate care and resources. The series begins with the article by Treadwell et al in this issue and will continue for the next several months. The WISCH teams will serve as leaders for sustainable and positive change for treatment of individuals with sickle cell disease and sickle cell trait in the United States. Their work is an important step towards transforming care for people with sickle cell disease, so that each person with sickle cell disease will receive the highest quality of care throughout their lifespan.
Corresponding author: Suzette Oyeku, MD, MPH, Children’s Hospital at Montefiore/Albert Einstein College of Medicine, 3444 Kossuth Ave, 1st Fl, Bronx, NY 10467, [email protected].
From the National Initiative for Children’s Healthcare Quality, Boston, MA.
This month JCOM launches a series calling attention to 5 teams working to improve care for individuals with sickle cell disease and sickle cell trait in the Hemoglobinopathy Learning Collaborative (—Ed.)
Sickle cell disease affects close to 100,000 people in United States [1]. This condition is characterized by chronic anemia and unpredictable pain episodes beginning in early childhood and leading to changes in functioning, diminished health-related quality of life, end-organ damage, increased health care use, and in some cases early mortality [2–5]. Sickle cell disease is identified through universal newborn screening [6] and is found in one in 2474 newborn Americans [7], with Americans of African ancestry most frequently affected. It is estimated that over 2 million Americans are genetic carriers of the sickle cell gene.
Although there have been major advancements in sickle cell care within the past several decades, there still exist significant variations in care and mortality [8–14]. Ongoing strategies to improve patient access to efficacious treatments are essential to improve outcomes for individuals with sickle cell disease.
Recognizing the compelling need for a focused national effort to improve care for this population and the relative lack of private resources committed to it [15], Congress established 2 federal programs to enhance newborn screening and improve follow-up and care and outcomes for this population: the Sickle Cell Disease Newborn Screening Program in 2002 [16] and the Sickle Cell Disease Treatment Demonstration Program in 2004 [17]. The programs are funded by the Health Resources and Services Administration and administered by the National Initiative for Children’s Healthcare Quality (NICHQ)’s Working to Improve Sickle Cell Healthcare (WISCH) program [2]. NICHQ became the coordinating center for the programs in 2011 and 2010, respectively. Diverse grantees are now working together in a Hemoglobinopathy Learning Collaborative, coordinated and facilitated by NICHQ and its partners Boston Medical Center and the Sickle Cell Disease Association of America. The current rounds of funding continue through 2014 for the Sickle Cell Disease Treatment Demonstration Program and 2015 for the Sickle Cell Disease Newborn Screening Program.
The Hemoglobinopathy Learning Collaborative grantees are developing strategies that will result in more coordinated and appropriate care in order that individuals with sickle cell disease experience fewer complications, acute care visits, and hospitalizations; enhanced quality of life; and more compassionate and respectful treatment from the health care system. Processes are also being developed to ensure that individuals screened for sickle cell disease and sickle cell trait receive genetic counseling, education and appropriate follow-up care for their condition. The aims of the collaborative are aligned with the national quality strategy of the Triple Aim—better care, better health, and lower overall health care costs [18]. The strategies and approaches developed and tested by the teams will be disseminated to the broader sickle cell community for use in the treatment and management of individuals with sickle cell disease.
The Hemoglobinopathy Learning Collaborative’s approach is based on the structure of the Breakthrough Series Learning Collaborative [19–21], a model championed by the Institute for Healthcare Improvement that brings together health care organizations that share a commitment to making major, rapid changes in order to produce breakthrough improvements in quality. Using a process known as the Model for Improvement [22], the teams develop ideas for changes, test small-scale changes using Plan-Do-Study-Act (PDSA) cycles, and measure to determine if the changes are leading to improvement. This method can quickly identify promising ideas and adapt and develop them to into robust, reliable standard processes [2].
There are 15 improvement teams working on quality improvement projects focused on improving acute care management, provision of recommended care, transition, self-management, provider education, and screening, counseling, and education for individuals with SCD and SCT. The 5 articles in this special series span these major content areas, from improving outcomes in the emergency department using standardized order sets to assessing the readiness of adolescents to transition to adult care, to using health information technology to improve care coordination, to developing a home pain management plan, and to using patient navigators to help coordinate care and resources. The series begins with the article by Treadwell et al in this issue and will continue for the next several months. The WISCH teams will serve as leaders for sustainable and positive change for treatment of individuals with sickle cell disease and sickle cell trait in the United States. Their work is an important step towards transforming care for people with sickle cell disease, so that each person with sickle cell disease will receive the highest quality of care throughout their lifespan.
Corresponding author: Suzette Oyeku, MD, MPH, Children’s Hospital at Montefiore/Albert Einstein College of Medicine, 3444 Kossuth Ave, 1st Fl, Bronx, NY 10467, [email protected].
1. Brousseau DC, Panepinto JA, Nimmer M, et al. The number of people with sickle cell disease in the United States: national and state estimates. Am J Hematol 2010;85:77–8.
2. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34-48.
3. Davis H, Moore RM Jr, Gergen PJ. Cost of hospitalizations associated with sickle cell disease in the United States. Public Health Rep 1997;112:40–3.
4. Panepinto JA. Health-related quality of life in sickle cell disease. Pediatr Blood Cancer 2008;51:5–9.
5. Steiner CA, Miller JL. Sickle cell disease patients in U.S. hospitals, 2004. In: Healthcare cost and utilization project statistical briefs. Rockville, MD: Agency for Healthcare Research and Quality; 2006.
6. National Newborn Screening & Global Resource Center. National newborn screening status report, 6 Jan 2013. Available at http://genes-r-us.uthscsa.edu/sites/genes-r-us/files/nbsdisorders.pdf.
7. Therrell BL, Hannon WH. National evaluation of US newborn screening system components. Mental Retard Dev Disabil Res Rev 2006;12:236–45.
8. Davis H, Schoendorf KC, Gergen PJ, et al. National trends in the mortality of children with sickle cell disease, 1968 through 1992. Am J Public Health 1997;87:1317–22.
9. Davis H, Gergen PJ, Moore RM Jr. Geographic differences in mortality of young children with sickle cell disease in the United States. Public Health Rep 1997;112:52–8.
10. Hamideh D, Alvarez O. Sickle cell disease related mortality in the United States (1999-2009). Pediatr Blood Cancer 2013;60:1482–6.
11. Brawley OW, Cornelius LJ, Edwards LR, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med 2008;148:932–8.
12. Raphael JL, Rattler TL, Kowalkowski MA, et al. The medical home experience among children with sickle cell disease. Pediatr Blood Cancer 2013;60:275–80.
13. Todd KH, Green C, Bonham VL, et al. Sickle cell disease related pain: crisis conflict. J Pain 2006;7:453–8.
14. Glassberg JA, Tanabe P, Chow A, et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med 2013;62:293–302.
15. Smith LA, Oyeku SO, Homer C, Zuckerman B. Sickle cell disease: a question of equity and quality. Pediatrics 2006;117:1763–70.
16. 107th Congress of the United States. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Act, 2002 (H.R. 3061.RH). Available at www.gpo.gov/fdsys/pkg/BILLS-107hr3061rh/pdf/BILLS-107hr3061rh.pdf.
17. 108th Congress of the United States. American Jobs Creation Act of 2004 (H.R. 4520). Available at http://thomas.loc.gov/cgi-bin/bdquery/z?d108:H.R.4520.
18. U.S. Department of Health and Human Services. Report to Congress: national strategy for quality improvement in health care. Washington, DC: U.S. Department of Health and Human Services; 2011. Available at www.healthcare.gov/law/resources /reports/quality03212011a.html.
19. Kilo CM. Improving care through collaboration. Pediatrics 1999;103(1 Suppl E):384–93.
20. Institute for Healthcare Improvement. The breakthrough series: IHI’s collaborative model for achieving breakthrough improvement. Boston: Institute for Healthcare Improvement; 2003.
21. Wagner EH, Glasgow RE, Davis C, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Improv 2001;27:63–80.
22. Langley GJ, Nolan KM, Norman CL, et al. The improvement guide: a practical approach to enhancing organizational performance. San Francisco: Jossey-Bass; 1996.
1. Brousseau DC, Panepinto JA, Nimmer M, et al. The number of people with sickle cell disease in the United States: national and state estimates. Am J Hematol 2010;85:77–8.
2. Oyeku SO, Wang CJ, Scoville R, et al. Hemoglobinopathy Learning Collaborative: using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease. J Health Care Poor Underserved 2012;23(3 Suppl):34-48.
3. Davis H, Moore RM Jr, Gergen PJ. Cost of hospitalizations associated with sickle cell disease in the United States. Public Health Rep 1997;112:40–3.
4. Panepinto JA. Health-related quality of life in sickle cell disease. Pediatr Blood Cancer 2008;51:5–9.
5. Steiner CA, Miller JL. Sickle cell disease patients in U.S. hospitals, 2004. In: Healthcare cost and utilization project statistical briefs. Rockville, MD: Agency for Healthcare Research and Quality; 2006.
6. National Newborn Screening & Global Resource Center. National newborn screening status report, 6 Jan 2013. Available at http://genes-r-us.uthscsa.edu/sites/genes-r-us/files/nbsdisorders.pdf.
7. Therrell BL, Hannon WH. National evaluation of US newborn screening system components. Mental Retard Dev Disabil Res Rev 2006;12:236–45.
8. Davis H, Schoendorf KC, Gergen PJ, et al. National trends in the mortality of children with sickle cell disease, 1968 through 1992. Am J Public Health 1997;87:1317–22.
9. Davis H, Gergen PJ, Moore RM Jr. Geographic differences in mortality of young children with sickle cell disease in the United States. Public Health Rep 1997;112:52–8.
10. Hamideh D, Alvarez O. Sickle cell disease related mortality in the United States (1999-2009). Pediatr Blood Cancer 2013;60:1482–6.
11. Brawley OW, Cornelius LJ, Edwards LR, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med 2008;148:932–8.
12. Raphael JL, Rattler TL, Kowalkowski MA, et al. The medical home experience among children with sickle cell disease. Pediatr Blood Cancer 2013;60:275–80.
13. Todd KH, Green C, Bonham VL, et al. Sickle cell disease related pain: crisis conflict. J Pain 2006;7:453–8.
14. Glassberg JA, Tanabe P, Chow A, et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med 2013;62:293–302.
15. Smith LA, Oyeku SO, Homer C, Zuckerman B. Sickle cell disease: a question of equity and quality. Pediatrics 2006;117:1763–70.
16. 107th Congress of the United States. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Act, 2002 (H.R. 3061.RH). Available at www.gpo.gov/fdsys/pkg/BILLS-107hr3061rh/pdf/BILLS-107hr3061rh.pdf.
17. 108th Congress of the United States. American Jobs Creation Act of 2004 (H.R. 4520). Available at http://thomas.loc.gov/cgi-bin/bdquery/z?d108:H.R.4520.
18. U.S. Department of Health and Human Services. Report to Congress: national strategy for quality improvement in health care. Washington, DC: U.S. Department of Health and Human Services; 2011. Available at www.healthcare.gov/law/resources /reports/quality03212011a.html.
19. Kilo CM. Improving care through collaboration. Pediatrics 1999;103(1 Suppl E):384–93.
20. Institute for Healthcare Improvement. The breakthrough series: IHI’s collaborative model for achieving breakthrough improvement. Boston: Institute for Healthcare Improvement; 2003.
21. Wagner EH, Glasgow RE, Davis C, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Improv 2001;27:63–80.
22. Langley GJ, Nolan KM, Norman CL, et al. The improvement guide: a practical approach to enhancing organizational performance. San Francisco: Jossey-Bass; 1996.