Journal of Pediatric Nursing (2015) xx, xxx–xxx
Measuring Acuity and Patient Progress for Youth With Special Health Care Needs in Transition Care Utilizing Nursing Outcomes Carol Anne Celona DNP, FNP-C Doctor of Nursing Practice, New York University, College of Nursing Received 2 December 2014; revised 12 May 2015; accepted 17 May 2015
Key words: Transition; Nursing outcomes classification; NOC; Youth with special health care needs; YSHCN
Implementation of a nursing outcomes classification system (NOC) for youth with special health care needs (YSHCN) to support a transition care program may help describe the acuity and measure effectiveness of outcomes. Legislation mandates that care for YSHCN demonstrates effective coordination of care that is patient centered and age appropriate. Transition programs are recommended by leading authorities. In order to provide fair and equable care a universal rating process needs to be implemented to describe the patients' functional status and progress. NOC has the potential to measure patient acuity and outcomes for YSHCN that potentially may guide care needs. © 2015 Elsevier Inc. All rights reserved.
Nursing outcomes classification (NOC) for youth with special health care needs (YSHCN) would provide a system of measurement for level of function, acuity and patient progress in transition care. To date, no one functional assessment is proven to give enough comprehensive information for all YSHCN. The NOC will provide a system of measure for acuity for a specific youth population and provide a universal rating process. YSHCN requires special guidance from health care providers in transition planning. Children and youth with special needs (YSHCN) are defined as adolescents (ages 10–21 years) or young adults (ages 21–24) who were born with physical cognitive, or emotional impairments, or developed at least one such impairment early in life (U.S. Department of Health and Human Services [DHHS], 2013). The population of YSHCN in the United States is significant. Fifteen percent of children in the United States have special health care needs and are categorized as YSHCN (U.S. Department of Health and Human Services [DHHS], 2013). Compounding this number, approximately 22 million children who lacked access to health care will gain health care coverage by 2015 (Affordable Care Act, 2010). The proportion of these YSHCN who will need
E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.05.005 0882-5963/© 2015 Elsevier Inc. All rights reserved.
transition planning ages 12–17 is 18% (4,581,950), yet only 40% of these youths are receiving the necessary support to effectively transition from pediatric to adult health care (NS-CSHCN, 2009/10). The U.S. Department of Health and Human Services views transition of YSHCN as a priority and thus set a goal of 90% for 2017 of effective communication and care coordination for these youths (Work for Quality, 2013, para 10).
Nursing Outcomes Classification Nursing outcomes classification (NOC) offers a way to measure outcomes that is applicable to all patient populations (Moorhead, Johnson, Maas, & Swanson, 2012). NOC builds off a list of indicators that describe client behavior, status of individual, family, or community state, behavior, or perceptions measured along a Likert type scale found in nurses' outcomes (Moorhead et al., pp 2). The authors recommend that the indicators address six domains: (1) health problems requiring referral to other health care providers, (2) medical diagnoses with relative factors such as diabetes, blood glucose control, or congestive heart failure signs and symptoms of fluid overload severity, (3) patient characteristics, such as mobility, anxiety and depression and age specific outcomes, (4) available resources, family financial social living conditions, (5) patient preferences, and preferences are influenced by the patient's
2
C.A. Celona Table 1
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 13 (1) Extremely compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (Shows up to appointments prepared)
(3) Moderately compromised
(4) Mildly compromised
(5) Not compromised
✓ ✓
✓ ✓ ✓
personal perceptions of health, desired health goals and preferences in relation to treatment, religious and cultural beliefs, and (6) treatment potential or measuring effectiveness of interventions such as education, nutrition and safety (Moorhead et al., pp 32). A 5-point scale Likert type scale is used to rate the patient's status for each of the indicators. In each 5-point scale “1” is severe, and “5” is no condition compromise. In other words (1) extremely compromised, (2) substantially compromised, (3) moderately compromised, (4) mildly compromised, and (5) not compromised (Moorhead et al., pp 34). Overall scores will give the practitioner justification as to how much time and resources are needed to accomplish goals. For example, a 13 year old male with diabetes scores 1 and 2 in the following indicators: practices good health habits; uses effective coping strategies; displays increasing levels of autonomy; performs in school to level of ability; and observes rules (Table 1). This describes a child who is at risk if he tries to manage his medical care without strict supervision. These scores will give the practitioner justification to set up more education type visits and also give a baseline measure for progress over time. Using the same example this child now age 15 score 3 to 4 on the same indicators demonstrating an increase of knowledge and skills and by age 18 the youth scores all 5 s indicating a prediction of safe transition to adult care (Tables 2 & 3).
Table 2
(2) Substantially compromised
Implementation of Nursing Outcomes Classification NOC measures attain significantly more information about a patient's condition than generally captured in routine medical exams. Researchers implemented 36 NOC in an adult cardiac care setting and found interrater reliability of 16 NOC was greater than 75% (Behrenbeck, Timm, Griebenow, & Demmer, 2005). Ten primary care adult outpatient nurse practitioner lead sites measured interrater reliability, criterion-related validity, and sensitivity for 26 NOC items and found consistently scoring NOC (Keenan, Barkauskas, et al., 2003; Keenan, Stocker, et al., 2003). Researchers demonstrated interrater reliability for 36 NOC frequency used in home care (Keenan, Barkauskas, et al., 2003; Keenan, Stocker, et al., 2003). A systematic review of 41 studies looking at the effectiveness of nursing documentation found that the quality of documentation had more positive effects to measuring patient outcomes (Saranto & Kinnunen, 2009). Furthermore, researchers deduced that NOC established for patients with traumatic brain injury gave staff information helpful in identifying patients' rehabilitation progress (Lunney, McGuire, Endozo, & McIntosh-Waddy, 2010). Cook (2012) used NOC as a standardized nursing language which increased clarity of application with CMS rules especially in areas of activities for daily living and functional status. These studies
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 15 (1) (2) (3) (4) (5) Extremely Substantially Moderately Mildly Not compromised compromised compromised compromised compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (shows up to appointments prepared)
✓ ✓ ✓ ✓
✓
Measuring Acuity and Patient Progress Table 3
3
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 18 (5) (4) (3) (2) (1) Not Mildly Moderately Substantially Extremely compromised compromised compromised compromised compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (shows up to appointments prepared)
have evaluated nursing outcomes and found them reliable in describing patients' level of function.
Gaps in the Literature There is a lack of standardized functional measurement across all disciplines that care for YSHCN, yet they are labeled in one category. The rational for classifying all YSHCN in the same category was to prevent gaps and duplication of services, which became apparent in the second half of the century until a unified definition was developed which would help in the allocation of resources (McPherson et al., 1998). Furthermore, YSHCN face similar barriers that can prevent successful transition to adult care (Betz, 2007; Reiss, Gibson, & Walker, 2005; Young et al., 2009). Although YSHCN have many different diagnoses, they all would need to be offered the same services for transition (AAP, AAFP & ACP, 2011). Within some specialties', YSHCN functioning levels are described utilizing scales for specific patient populations such as the Gross Motor Function Classification System (GMFCS) describes gross motor function for children with cerebral palsy (Palisano, Rosenbaum, Bartlett, & Livingston, 2008) and Children's Global Assessment Scale (CGAS) (Shaffer et al., 1983) recommended for youths diagnosed with psychiatric illnesses. Popular assessment scales have not been proven applicable to all YSHCN. A systematic review of seven popular universal instruments including the Test of Gross Motor Development (TGMD) and the Functional Independence Measure for Children (WeeFIM) found these instruments do not provide enough assessment information as required for children with developmental co-ordination disorder (Van der Linde et al., 2015). A systematic review of transition-readiness tools for adolescents with chronic medical conditions found that the Transition Readiness Assessment Questionnaire (TRAQ) demonstrating adequate content validity but no correlation to transition outcomes could be established (Zang, Ho, & Kennedy, 2014).
Transition of YSHCN At-risk populations are challenging in maintaining continuity of care thus transition of YSHCN from pediatric to adult care has
✓ ✓ ✓ ✓ ✓
become a priority of state and federal agencies as well as leading medical authorities. Together all are requiring that health care providers improve transition care coordination for this special population. The U.S. Department of Health and Human Services developed a National Quality Strategy focused on six global health care initiatives or priorities of which priority three “promoting effective communication and coordination of care” speaks directly to the need for a responsible transition of care (Work for Quality, 2013, para 5). Furthermore, legislation mandates that care provided for YSHCN demonstrates effective coordination of care that is patient centered and age appropriate (NYS Justice Center, 2013; U.S. Department of Health and Human Services & Office of Disease Prevention and Health Promotion [DHHS], 2014). Healthy People 2020 outlines two goals addressing transition of YSHCN to adult care 1) DH-4, reduce delays in receiving primary and periodic preventive care for YSHCN due to specific barriers and 2) DH-5, increase discussions of transition planning between YSHCN and providers (NS-CSHCN, 2009/10). Transitions Clinical Report Authoring Group whose members included representatives from the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP) and the American College of Physicians (ACP) also recommend a structured transition program to meet the needs of YSCHN (AAP, AAFP & ACP, 2011). Transition programs are currently being implemented at major medical centers (Orthopaedic Surgery, n.d.; Our Cerebral Palsy Services, 2014; Youth Transitions Program, 2013), but effectiveness of these programs have yet to be shared.
Conclusion YSHCN transitioning to adult care has become a public health priority due to the large number of these youths not achieving successful transition. Having an effective transition programs may be the key to their success. Measuring level of function and progress of YSHCN is an important cornerstone in assessing and comparing the effectiveness of any transition program. Some medical specialties have systems to place to measure patient acuity but these scales are specific to that specialty and not applicable to all YSHCN. Therefore, it is difficult to match acuity and patient progress across YSHCN
4 with different diagnoses. Nursing outcomes classification provides a method of assessment that is both dynamic and applicable across all disciplines and patient types and a useful tool to determine patient acuity and progress. Education in the use of nursing outcomes leads to more accurate documentation and clear descriptions of patients' functional status. In order for program implementation to be successful, education on nomenclature and process and having staff agree to selected significant items is crucial in putting these tools into practice (Behrenbeck et al., 2005; Müller-Staub, 2009). Utilization of an NOC classification system for YSHCN in a transition care programs will help measure patients' level of function, acuity and may quantify effectiveness of outcomes for transition needs of this vulnerable population.
References Affordable Care Act of 2010 (ACA) (2010). Pub. L. 111–148, § 6407. Retrieved July 30, 2013 from http://www.gpo.gov/fdsys/pkg/ PLAW111publ148/pdf/PLAW-111publ148.pdf American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200, http://dx.doi.org/10.1542/peds.2011- 0969; 10.1542/peds. 2011-0969. Behrenbeck, J. G., Timm, J. A., Griebenow, L. K., & Demmer, K. A. (2005). Nursing-sensitive outcome reliability testing in a tertiary care setting. International Journal of Nursing Terminologies and Classifications, 16, 14–20, http://dx.doi.org/10.1111/j.1744-618X.2005.00002.x. Betz, C. L. (2007). Facilitating the transition of adolescents with developmental disabilities: Nursing practice issues and care. Journal of Pediatric Nursing, 22, 103–113, http://dx.doi.org/10.1016/j.pedn.2006.07.006. Cook, E. (2012). Nursing outcomes classification: A cross-link to assign nursing home recertification survey severity scores. (Doctor of Philosophy) Thesis University of Iowa (http://ir.uiowa.edu/etd/2465). Keenan, G., Barkauskas, V., Stocker, J., Johnson, M., Maas, M., Moorhead, S., et al. (2003a). Establishing the validity, reliability, and sensitivity of NOC in an adult care nurse practitioner setting. Outcomes Management, 7, 74–83. Keenan, G. I., Stocker, J., Barkauskas, V., Johnson, M., Maas, M., Moorhead, S., et al. (2003b). Assessing the reliability, validity, and sensitivity of nursing outcomes classification in home care settings. Journal of Nursing Measurement, 11, 135–155. Lunney, M., McGuire, M., Endozo, N., & McIntosh-Waddy, D. (2010). Consensus-validation study identifies relevant nursing diagnoses, nursing interventions, and health outcomes for people with traumatic brain injuries. Rehabilitation Nursing, 35, 161–166. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102, 137–140. Moorhead, S., Johnson, M., Maas, M. L., & Swanson, E. (2012). Nursing outcomes classification (NOC) (5th ed.). St. Louis, MO: Mosby Elsevier. Müller-Staub, M. (2009). Evaluation of the implementation of nursing diagnoses, interventions, and outcomes. International Journal Of Nursing Terminologies & Classifications, 20, 9–15, http://dx.doi.org/ 10.1111/j.1744-618X.2008.01108.
C.A. Celona National Survey of Children with Special Health Care Needs. (NS-CSHCN) (2009/10). Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. (Retrieved January 7th, 2014, from www.childhealthdata.org). NYS Justice Center (2013). Code of conduct for custodians of people with special needs: New York State Justice Center for the Protection of People with Special Needs. (http://www.justicecenter.ny.gov/investigationsprosecution/code-conduct/form). Orthopaedic Surgery (d). Weinberg Family Cerebral Palsy Center at NewYorkPresbyterian/Morgan Stanley Children's Hospital. Retrieved March 25th, 2014, from http://childrensnyp.org/mschony/columbia-cerebral-palsycenter.html Our Cerebral Palsy Services (2014). Gillette Children’s Hospital. retrieved March 3rd, 2014, from http://www.gillettechildrens.org/conditions-andcare/cerebral-palsy/#ourservices Palisano, R., Rosenbaum, P., Bartlett, D., & Livingston, M. (2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine And Child Neurology, 50, 744–750, http://dx.doi.org/10.1111/j.1469-8749.2008.03089. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115, 112–120, http://dx.doi.org/10.1542/peds.2004-1321. Saranto, K., & Kinnunen, U. (2009). Evaluating nursing documentation – research designs and methods: systematic review. Journal of Advanced Nursing, 65, 464–476, http://dx.doi.org/10.1111/j.1365-2648.2008.04914. Shaffer, D., Gould, M. S., Brasic, J., Ambrosini, P., Fisher, P., Bird, H., et al. (1983). A Children’s Global Assessment Scale (CGAS). Archives of General Psychiatry, 40, 1228–1231. U.S. Department of Health and Human Services (2013). Youth with special health care needs. Health Resources and Services Administration, Maternal and Child Health Bureau. (Washington, DC. Retrieved March 30th, 2014, from http://mchb.hrsa.gov/index.html). U.S. Department of Health and Human Services, & Office of Disease Prevention and Health Promotion (2014). Barrier to health care, Healthy People 2020. (Washington, DC. Retrieved August 7, 2014, from http://www.healthypeople.gov/2020/topicsobjectives2020/ objectiveslist.aspx?topicId=2). Van der Linde, B. W., Van Netten, J. J., Otten, E., Postema, K., Geuze, R. H., & Schoemaker, M. M. (2015). A systematic review of instruments for assessment of capacity in activities of daily living in children with developmental co-ordination disorder. Child: Care, Health and Development, 41, 23–34, http://dx.doi.org/10.1111/cch.12124. Work for Quality (2013). Annual progress report to congress: National strategy for quality improvement in health care. Submitted by the U.S. Department of Health and Human Services. (Retrieved September 9th, 2013, from http://www.ahrq.gov/workingforquality/reports/ annualreports/nqs2013annlrpt.htm#tab3). Young, N. L., Barden, W. S., Mills, W. A., Burke, T. A., Law, M., & Boydell, K. (2009). Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities. Physical & Occupational Therapy in Pediatrics, 29, 345–361, http://dx.doi.org/10. 3109/01942630903245994. Youth Transitions Program (2013). Cerebral Palsy Association of Alberta Canada. (Retrieved March 15th, 2014, from http://www.cpalberta.com/ programs/youth-transitionsprogram). Zang, L. F., Ho, J. S. W., & Kennedy, S. E. (2014). A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BioMed Central Pediatrics, 14, 1–10, http://dx.doi.org/10.1186/1471-2431-14-4.
Measuring Acuity and Patient Progress for Youth With Special Health Care Needs in Transition Care Utilizing Nursing Outcomes Carol Anne Celona DNP, FNP-C Doctor of Nursing Practice, New York University, College of Nursing Received 2 December 2014; revised 12 May 2015; accepted 17 May 2015
Key words: Transition; Nursing outcomes classification; NOC; Youth with special health care needs; YSHCN
Implementation of a nursing outcomes classification system (NOC) for youth with special health care needs (YSHCN) to support a transition care program may help describe the acuity and measure effectiveness of outcomes. Legislation mandates that care for YSHCN demonstrates effective coordination of care that is patient centered and age appropriate. Transition programs are recommended by leading authorities. In order to provide fair and equable care a universal rating process needs to be implemented to describe the patients' functional status and progress. NOC has the potential to measure patient acuity and outcomes for YSHCN that potentially may guide care needs. © 2015 Elsevier Inc. All rights reserved.
Nursing outcomes classification (NOC) for youth with special health care needs (YSHCN) would provide a system of measurement for level of function, acuity and patient progress in transition care. To date, no one functional assessment is proven to give enough comprehensive information for all YSHCN. The NOC will provide a system of measure for acuity for a specific youth population and provide a universal rating process. YSHCN requires special guidance from health care providers in transition planning. Children and youth with special needs (YSHCN) are defined as adolescents (ages 10–21 years) or young adults (ages 21–24) who were born with physical cognitive, or emotional impairments, or developed at least one such impairment early in life (U.S. Department of Health and Human Services [DHHS], 2013). The population of YSHCN in the United States is significant. Fifteen percent of children in the United States have special health care needs and are categorized as YSHCN (U.S. Department of Health and Human Services [DHHS], 2013). Compounding this number, approximately 22 million children who lacked access to health care will gain health care coverage by 2015 (Affordable Care Act, 2010). The proportion of these YSHCN who will need
E-mail address: [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.05.005 0882-5963/© 2015 Elsevier Inc. All rights reserved.
transition planning ages 12–17 is 18% (4,581,950), yet only 40% of these youths are receiving the necessary support to effectively transition from pediatric to adult health care (NS-CSHCN, 2009/10). The U.S. Department of Health and Human Services views transition of YSHCN as a priority and thus set a goal of 90% for 2017 of effective communication and care coordination for these youths (Work for Quality, 2013, para 10).
Nursing Outcomes Classification Nursing outcomes classification (NOC) offers a way to measure outcomes that is applicable to all patient populations (Moorhead, Johnson, Maas, & Swanson, 2012). NOC builds off a list of indicators that describe client behavior, status of individual, family, or community state, behavior, or perceptions measured along a Likert type scale found in nurses' outcomes (Moorhead et al., pp 2). The authors recommend that the indicators address six domains: (1) health problems requiring referral to other health care providers, (2) medical diagnoses with relative factors such as diabetes, blood glucose control, or congestive heart failure signs and symptoms of fluid overload severity, (3) patient characteristics, such as mobility, anxiety and depression and age specific outcomes, (4) available resources, family financial social living conditions, (5) patient preferences, and preferences are influenced by the patient's
2
C.A. Celona Table 1
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 13 (1) Extremely compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (Shows up to appointments prepared)
(3) Moderately compromised
(4) Mildly compromised
(5) Not compromised
✓ ✓
✓ ✓ ✓
personal perceptions of health, desired health goals and preferences in relation to treatment, religious and cultural beliefs, and (6) treatment potential or measuring effectiveness of interventions such as education, nutrition and safety (Moorhead et al., pp 32). A 5-point scale Likert type scale is used to rate the patient's status for each of the indicators. In each 5-point scale “1” is severe, and “5” is no condition compromise. In other words (1) extremely compromised, (2) substantially compromised, (3) moderately compromised, (4) mildly compromised, and (5) not compromised (Moorhead et al., pp 34). Overall scores will give the practitioner justification as to how much time and resources are needed to accomplish goals. For example, a 13 year old male with diabetes scores 1 and 2 in the following indicators: practices good health habits; uses effective coping strategies; displays increasing levels of autonomy; performs in school to level of ability; and observes rules (Table 1). This describes a child who is at risk if he tries to manage his medical care without strict supervision. These scores will give the practitioner justification to set up more education type visits and also give a baseline measure for progress over time. Using the same example this child now age 15 score 3 to 4 on the same indicators demonstrating an increase of knowledge and skills and by age 18 the youth scores all 5 s indicating a prediction of safe transition to adult care (Tables 2 & 3).
Table 2
(2) Substantially compromised
Implementation of Nursing Outcomes Classification NOC measures attain significantly more information about a patient's condition than generally captured in routine medical exams. Researchers implemented 36 NOC in an adult cardiac care setting and found interrater reliability of 16 NOC was greater than 75% (Behrenbeck, Timm, Griebenow, & Demmer, 2005). Ten primary care adult outpatient nurse practitioner lead sites measured interrater reliability, criterion-related validity, and sensitivity for 26 NOC items and found consistently scoring NOC (Keenan, Barkauskas, et al., 2003; Keenan, Stocker, et al., 2003). Researchers demonstrated interrater reliability for 36 NOC frequency used in home care (Keenan, Barkauskas, et al., 2003; Keenan, Stocker, et al., 2003). A systematic review of 41 studies looking at the effectiveness of nursing documentation found that the quality of documentation had more positive effects to measuring patient outcomes (Saranto & Kinnunen, 2009). Furthermore, researchers deduced that NOC established for patients with traumatic brain injury gave staff information helpful in identifying patients' rehabilitation progress (Lunney, McGuire, Endozo, & McIntosh-Waddy, 2010). Cook (2012) used NOC as a standardized nursing language which increased clarity of application with CMS rules especially in areas of activities for daily living and functional status. These studies
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 15 (1) (2) (3) (4) (5) Extremely Substantially Moderately Mildly Not compromised compromised compromised compromised compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (shows up to appointments prepared)
✓ ✓ ✓ ✓
✓
Measuring Acuity and Patient Progress Table 3
3
Example of a patient assessment using NOC over a 4 year time period. Male with diabetes age 18 (5) (4) (3) (2) (1) Not Mildly Moderately Substantially Extremely compromised compromised compromised compromised compromised
NOC Practices good health habits (example follows diet) Uses effective coping strategies (no emotional outbursts) Displays increasing levels of autonomy (example performs FSG independently) Performs in school to level of ability Observes rules (shows up to appointments prepared)
have evaluated nursing outcomes and found them reliable in describing patients' level of function.
Gaps in the Literature There is a lack of standardized functional measurement across all disciplines that care for YSHCN, yet they are labeled in one category. The rational for classifying all YSHCN in the same category was to prevent gaps and duplication of services, which became apparent in the second half of the century until a unified definition was developed which would help in the allocation of resources (McPherson et al., 1998). Furthermore, YSHCN face similar barriers that can prevent successful transition to adult care (Betz, 2007; Reiss, Gibson, & Walker, 2005; Young et al., 2009). Although YSHCN have many different diagnoses, they all would need to be offered the same services for transition (AAP, AAFP & ACP, 2011). Within some specialties', YSHCN functioning levels are described utilizing scales for specific patient populations such as the Gross Motor Function Classification System (GMFCS) describes gross motor function for children with cerebral palsy (Palisano, Rosenbaum, Bartlett, & Livingston, 2008) and Children's Global Assessment Scale (CGAS) (Shaffer et al., 1983) recommended for youths diagnosed with psychiatric illnesses. Popular assessment scales have not been proven applicable to all YSHCN. A systematic review of seven popular universal instruments including the Test of Gross Motor Development (TGMD) and the Functional Independence Measure for Children (WeeFIM) found these instruments do not provide enough assessment information as required for children with developmental co-ordination disorder (Van der Linde et al., 2015). A systematic review of transition-readiness tools for adolescents with chronic medical conditions found that the Transition Readiness Assessment Questionnaire (TRAQ) demonstrating adequate content validity but no correlation to transition outcomes could be established (Zang, Ho, & Kennedy, 2014).
Transition of YSHCN At-risk populations are challenging in maintaining continuity of care thus transition of YSHCN from pediatric to adult care has
✓ ✓ ✓ ✓ ✓
become a priority of state and federal agencies as well as leading medical authorities. Together all are requiring that health care providers improve transition care coordination for this special population. The U.S. Department of Health and Human Services developed a National Quality Strategy focused on six global health care initiatives or priorities of which priority three “promoting effective communication and coordination of care” speaks directly to the need for a responsible transition of care (Work for Quality, 2013, para 5). Furthermore, legislation mandates that care provided for YSHCN demonstrates effective coordination of care that is patient centered and age appropriate (NYS Justice Center, 2013; U.S. Department of Health and Human Services & Office of Disease Prevention and Health Promotion [DHHS], 2014). Healthy People 2020 outlines two goals addressing transition of YSHCN to adult care 1) DH-4, reduce delays in receiving primary and periodic preventive care for YSHCN due to specific barriers and 2) DH-5, increase discussions of transition planning between YSHCN and providers (NS-CSHCN, 2009/10). Transitions Clinical Report Authoring Group whose members included representatives from the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP) and the American College of Physicians (ACP) also recommend a structured transition program to meet the needs of YSCHN (AAP, AAFP & ACP, 2011). Transition programs are currently being implemented at major medical centers (Orthopaedic Surgery, n.d.; Our Cerebral Palsy Services, 2014; Youth Transitions Program, 2013), but effectiveness of these programs have yet to be shared.
Conclusion YSHCN transitioning to adult care has become a public health priority due to the large number of these youths not achieving successful transition. Having an effective transition programs may be the key to their success. Measuring level of function and progress of YSHCN is an important cornerstone in assessing and comparing the effectiveness of any transition program. Some medical specialties have systems to place to measure patient acuity but these scales are specific to that specialty and not applicable to all YSHCN. Therefore, it is difficult to match acuity and patient progress across YSHCN
4 with different diagnoses. Nursing outcomes classification provides a method of assessment that is both dynamic and applicable across all disciplines and patient types and a useful tool to determine patient acuity and progress. Education in the use of nursing outcomes leads to more accurate documentation and clear descriptions of patients' functional status. In order for program implementation to be successful, education on nomenclature and process and having staff agree to selected significant items is crucial in putting these tools into practice (Behrenbeck et al., 2005; Müller-Staub, 2009). Utilization of an NOC classification system for YSHCN in a transition care programs will help measure patients' level of function, acuity and may quantify effectiveness of outcomes for transition needs of this vulnerable population.
References Affordable Care Act of 2010 (ACA) (2010). Pub. L. 111–148, § 6407. Retrieved July 30, 2013 from http://www.gpo.gov/fdsys/pkg/ PLAW111publ148/pdf/PLAW-111publ148.pdf American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182–200, http://dx.doi.org/10.1542/peds.2011- 0969; 10.1542/peds. 2011-0969. Behrenbeck, J. G., Timm, J. A., Griebenow, L. K., & Demmer, K. A. (2005). Nursing-sensitive outcome reliability testing in a tertiary care setting. International Journal of Nursing Terminologies and Classifications, 16, 14–20, http://dx.doi.org/10.1111/j.1744-618X.2005.00002.x. Betz, C. L. (2007). Facilitating the transition of adolescents with developmental disabilities: Nursing practice issues and care. Journal of Pediatric Nursing, 22, 103–113, http://dx.doi.org/10.1016/j.pedn.2006.07.006. Cook, E. (2012). Nursing outcomes classification: A cross-link to assign nursing home recertification survey severity scores. (Doctor of Philosophy) Thesis University of Iowa (http://ir.uiowa.edu/etd/2465). Keenan, G., Barkauskas, V., Stocker, J., Johnson, M., Maas, M., Moorhead, S., et al. (2003a). Establishing the validity, reliability, and sensitivity of NOC in an adult care nurse practitioner setting. Outcomes Management, 7, 74–83. Keenan, G. I., Stocker, J., Barkauskas, V., Johnson, M., Maas, M., Moorhead, S., et al. (2003b). Assessing the reliability, validity, and sensitivity of nursing outcomes classification in home care settings. Journal of Nursing Measurement, 11, 135–155. Lunney, M., McGuire, M., Endozo, N., & McIntosh-Waddy, D. (2010). Consensus-validation study identifies relevant nursing diagnoses, nursing interventions, and health outcomes for people with traumatic brain injuries. Rehabilitation Nursing, 35, 161–166. McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102, 137–140. Moorhead, S., Johnson, M., Maas, M. L., & Swanson, E. (2012). Nursing outcomes classification (NOC) (5th ed.). St. Louis, MO: Mosby Elsevier. Müller-Staub, M. (2009). Evaluation of the implementation of nursing diagnoses, interventions, and outcomes. International Journal Of Nursing Terminologies & Classifications, 20, 9–15, http://dx.doi.org/ 10.1111/j.1744-618X.2008.01108.
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