- Email: [email protected]
Improving cardiac care quality and safety through partnerships with patients and their families
Progress in Pediatric Cardiology 33 (2012) 73–79
Contents lists available at SciVerse ScienceDirect
Progress in Pediatric Cardiology journal homepage: www.elsevier.com/locate/ppedcard
Improving cardiac care quality and safety through partnerships with patients and their families Cherissa C. Hanson a,⁎, Paul R. Barach b, c a b c
Department of Anesthesia and Pediatrics, Division of Pediatric Critical Care Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, USA Department of Anesthesia and Emergency Medicine, University of Utrecht, Netherlands University of Stavanger, Norway
a r t i c l e
i n f o
Keywords: Pediatrics Patient safety Cardiac care Congenital heart disease Family centered care
a b s t r a c t The role of patients, families, and medical providers to improve outcomes for children with cardiac disease continues to evolve over time. Healthcare organizations are struggling to involve patients in meaningful ways and learn from their experience. Participation by parents and families is critical to achieving optimal medical care for pediatric cardiac patients. Confusion about the roles of patients, clinicians, and information transparency, can lead to a loss of continuity and a lack of adherence to medical therapies. This can result in poor outcomes for children with chronic illnesses such as congenital cardiac disease. This article aims to overview and clarify the roles and responsibilities of the patient and their family in helping to improve outcomes for children with congenital cardiac disease. We discuss general principles of family centered care, adherence, and transition of care for young adults with chronic illness. We propose goals and delineate key elements for optimal outcomes for congenital cardiac patients and lifelong wellness. There are steps that hospitals can take to optimize the contribution of the parent and family. Organizations can go beyond mainstream frameworks for quality improvement by fostering patient-centered care and create higher quality and value for their patients and their communities. © 2011 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Although patient-centered care and patient satisfaction are becoming a major focus in healthcare, doctors and nurses around the world are struggling with the concept. Poor coordination of care across settings results in discontinuity of care, confusion, and child harm leading to re-hospitalizations that are costly, potentially harmful, and often avoidable. This is bolstered by evidence of benefits in clinical outcomes, patient experiences and the business case that supports moving towards ‘patient-centered care’. Health care organizations have devoted considerable effort to applying established strategies of quality improvement [1]. These programs have focused, with mixed degrees of success, on systems for risk management, incident reporting and quality assurance [2]. Despite such industry-based approaches, research suggests that current quality improvement strategies, such as clinical audit and feedback, are insufficient to ensure the widespread implementation of patient-centeredness throughout an organization [3]. Historically children born with childhood cardiac disease were not expected to survive into adulthood. Childhood heart disease comprises congenital heart disease (CHD) and heart disease, such as arrhythmia, myocarditis, cardiomyopathy, Kawasaki disease and rheumatic heart disease, acquired at a young age. Congenital heart disease is not a single
disease but a general name for malformations of the heart, heart valves or major blood vessels which are present at birth. Prior to 1981 the death rate for children with congenital heart disease was 92 deaths per 100,000 live births in the first year of life and 4.6 deaths per 100,000 children between the age of one and five years [4]. Although there is no indication that the incidence of CHD is increasing the prevalence is predicted to increase. In particular, there are an increasing number of adults with congenital heart disease who are not well served by the existing health care system [5]. Enhanced medical interventions have significantly improved the survival rates for infants and children. There has been an increased focus on the quality of life of these individuals and their families. Recent studies have identified the neuro-developmental, psychosocial and behavioral outcomes that may have a negative impact on the schooling and activities of individuals with childhood heart disease [6]. By 2006 the mortality resulting from any type of congenital heart disease had decreased to 41 per 100,000 live births (infants less than one year), to 1.4 deaths per 100,000 population of that age (children 1 to 4 years), and to 0.41 deaths per 100,000 population of that age (children 5 to 17 years) [7]. Currently, for those surviving infancy the predicted survival to 16 years of life is 96% [8]. 2. Family centered care
⁎ Corresponding author at: Pediatric Critical Care Medicine, 214 MacNider Building, Chapel Hill, NC 27599-7221, USA. Tel.: + 1 919 966 7495; fax: + 1 919 966 6164. E-mail address: [email protected] (C.C. Hanson). 1058-9813/$ – see front matter © 2011 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ppedcard.2011.12.012
Managing sick children in a reliable and safe manner requires patients and providers to partner together to achieve optimal outcomes.
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C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79
Table 1 Microsystem dimensions and operations definitions [11]. Dimensions
Operational definition
1. Leadership
The role of leadership is to balance setting and reaching collective goals, empower individual autonomy as well as accountability through building knowledge, respectful action, and reviewing and reflecting 2. Organizational support The larger organization looks for ways to connect to and facilitate the work of the microsystem and coordinate the hand-offs between microsystems 3. Staff focus There is selective hiring of the right kind of people; the orientation process is designed to fully integrate new staff into culture and work roles; expectations of staff are high regarding performance, continuing education, professional growth, and networking 4. Education and training All clinical microsystems, regardless of whether they are part of an academic medical center, have responsibility for the ongoing education and training of staff and for aligning daily work roles with training competencies; academic clinical microsystems have the additional responsibility of training students 5. Interdependence The interaction of staff is characterized by trust, collaboration, willingness to help each other, appreciation of complementary roles, respect and recognition that all contribute individually to a shared purpose 6. Patient focus The primary concern is to meet all patient needs — caring, listening, educating, and responding to special requests, innovating against needs, and ensuring smooth service flow 7. Community and market focus The microsystem is a resource for the community and the community is a resource to the microsystem; there is a focus on establishing the relationship with the community 8. Performance results Performance focuses on patient outcomes, avoidable costs, streamlining delivery, using data feedback, promoting positive competition, and frank discussions about performance 9. Process improvement An atmosphere for learning and redesign is supported by the continuous monitoring of care, use of benchmarking, frequent tests of change, and a staff that has been empowered to innovate 10. Information and information Information is THE connector — staff to patients, staff to staff, needs with actions to meet needs; technology can facilitate effective technology communication and multiple formal and informal channels are used to keep everyone informed all the time, listen to everyone's ideas, and ensure that everyone is connected on important topics
The Institute for Healthcare Improvement has defined family centered care as “health care that establishes a partnership among practitioners, patients and their families (when appropriate) to ensure that decisions respect patients' wants, needs and preferences and solicit patients' input on the education and support they need to make decisions and participate in their own care.” [9] Clarity around role responsibility and the role of patient advocacy cannot be underestimated. In the past, providers served primarily to advise patients of what should be done. As health care has begun to partner with patients and their families, a new role for the health care provider and the patient has emerged. Adopting the concept and implementing the practice of meaningful partnering with patients and families require defining clear roles and responsibilities for all parties involved. The patient is expected to be an active participant of the team. A clear delineation of patient rules and responsibilities at the first encounter with providers may reduce misunderstandings, errors, and miscommunications. Core concepts shared by patients and their providers such as dignity and respect, information sharing, participation, and collaborative shared decision making are the hallmarks of family centered care. The translation of these concepts into commonly accepted patient responsibilities will clarify and establish the patient's role unambiguously as the center of the clinical microsystem [10]. The clinical microsystem is a group of clinicians and staff working together to provide care for the patient. Clinical microsystems provide a conceptual and practical framework for thinking about the organization and delivery of care. The microsystem dimensions and operational definitions can be seen in Table 1 [11]. Table 2 Examples of patient and family advisory roles in health care systemsa. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. a
Patient safety Quality improvement Facility architecture and design Use of information technology Pain management Patient/family education Discharge/transition planning Palliative/end of life care Staff orientation and education Service excellence Ethics Diversity/cultural competency
Ref [13] page 23.
Patients traditionally are expected to provide complete and accurate information to medical providers, to keep appointments and notify providers if this is not possible, to participate in discussions regarding treatment, and comply with treatments or discuss alternatives with providers. However, as patients learn more about the occurrence of errors in the medical system, the role of the patient has continued to expand. For example, many centers now empower patients to question providers about anything that does not seem right to them knowing that medical providers and medical systems are fallible. There are many ways in which patients and their primary caregivers can contribute to the optimization of care. For example, they can be advocates of hand hygiene practices proven to prevent hospital acquired infections by making clinicians aware when they don’t wash their hands [12]. In addition, patients and their families can assist with the coordination of care and advocate for improvements to the health care system. Patients collaborate with healthcare systems to improve healthcare processes by serving on hospital committees and giving feedback on hospital policies [13]. Their role on advisory and governance committees includes but is not limited to helping plan or remodel patient care areas, providing feedback to hospital leadership about patients' needs and concerns, or how to educate patients on safety and quality matters [14]. Table 2 lists areas in healthcare where patients or families can serve as advisors to health care organizations. As children, this responsibility falls primarily on the parents or the primary caregivers of the patient. However, as children move into adolescence and adulthood this role and the responsibilities therein can transition from the parent and be shared with the child. Patient- and family-centered care relies on communication between patients, families, and the medical team for planning, delivery, and evaluation of care. Information sharing between medical providers and their patients is essential in pediatrics where patients are reliant on family members for decision making. Allowing patients Table 3 Risk factors for non-adherence to medical therapies [19]. 1. 2. 3. 4. 5. 6.
Older age Single parent household Smoking Use of illicit street drugs Tattoos or multiple body piercings Sedentary lifestyle
C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79
and their caregivers to be present at bedside rounds when the plan of care is created and during bedside clinical handoffs (handovers) promotes education, accountability and a culture of safety [15]. Educating families about potential complications that may occur to their loved ones and providing them with a way to call for help quickly is another way that providers can facilitate patient advocacy. Parents
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often recognize subtle differences in their child's condition and are distressed when providers ignore these pleas for help which lead to lost opportunities to engage the child, catch system failings and prevent patient harm [16]. This has led to the implementation of family activation of pediatric rapid response systems in medical centers across the United States [17]. Despite the concerns of medical
Fig. 1. Individual health plan [25].
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Fig. 1 (continued).
providers about allowing families to activate emergency response systems within the hospital there has been little abuse of the system. In a recent review of 25 United States hospitals, 18 hospitals now allow direct patient and family activation of their rapid response teams with great success [18].
3. Adherence Adherence is defined as the ability to follow the recommendations of healthcare professional's treatment regimens [19]. Children with congenital heart disease often have residual hemodynamic and
C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79
electrophysiological consequences that may require long-term treatment with complex regimens. A patient's wellbeing may be greatly impacted by their and their family's ability to manage multiple medication regimens and to adhere to lifestyle changes such as diet and exercise restrictions. Failure to comply with the recommended treatment may even be life threatening and for many children and adults this pressure creates ongoing anxiety and can be overwhelming. A recent review about adherence of children or adolescents with cardiac disease or cardiac failure found six risk factors for non-adherence to medical therapies [6]. These are summarized in Table 3. The clinical outcomes associated with non adherence in children who underwent cardiac transplantation included increased episodes of rejection and increased mortality [6]. These articles barely scratch the surface of the consequences of non adherence. Additional research from biological, cognitive, and psychological perspectives into what motivates patient adherence among congenital cardiac patients is needed to further our understanding on how best to manage these children. 4. Child maturation and transition of care The concept of a “medical home” is an approach to comprehensive primary care that includes the following key components: familycentered partnership, community-based system, transitions, and value [20]. The primary care clinician through partnership with the family can support the family as they navigate through transitions of care to assure that the medical and non-medical needs of the child are met to optimize the potential growth and development of the child. The transition of care for pediatric patients from pediatric providers to adult providers is defined as “a purposeful, planned process that addresses the medical, psychological, and educational/vocational
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needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adultoriented health care systems” [21]. The goal of a formal transition program for patients is to prepare young adults for autonomous self-management of their care in conjunction with adult health care providers. However, in Canada less than half of expected patients with congenital cardiac disease attended at least 1 follow-up appointment with a recommended adult care provider before the age of 22 [22]. In the United States, 63% of adults with American Heart Association Class II or Class III congenital heart disease have a lapse of care of more than two years following the transition from a pediatric to an adult cardiology clinic. The median duration of lapses of care was 10 years [23]. Efforts to develop adolescent friendly patient- and family-centered care have been underway since 1987, when the US Surgeon General called for “family-centered, community-based, coordinated care for children with special health care needs and their families” [24]. Patient and family centered care aims to provide resources for adolescents and providers to aid communication and facilitate selfmanagement skills, and to promote systematic changes that support patient self care. This includes the transition of care from childhood subspecialists to the adult primary and specialty health care providers. The American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine released a joint consensus statement in 2002 regarding the transitions of young adults with special health care needs. In this statement multiple steps are listed as critical to successful transitioning to adult oriented health care. First, a health care provider must be identified that is willing to assume responsibility for current care, care coordination, and future health planning. Next, a portable and accessible medical health summary should be prepared and maintained. Fig. 1 depicts an example of a medical
Fig. 2. Transition plan.
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C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79
Table 4 Patient education topics important for successful transition of care [29]. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Residual hemodynamic considerations Contraception and pregnancy planning Endocarditis considerations Arrhythmia considerations Non-cardiac surgery considerations Non-cardiac medical considerations Career, vocational, and insurance planning Lifestyle issues End-of-life discussions Skills Training
health summary for health care providers provided online at the Utah Medical Home Portal [25]. A written transition plan should be created with the patient and family and given to the family by the age of 14. Fig. 2 depicts an example of a transition plan for health care providers. The plan should include what services will be needed to care for the patient, who will provide them, and how they will be financed. The patient transition plan should be reviewed and revised at least yearly [26]. Transition of care is a formal part of pediatric training programs. Table 4 reviews common curriculum topics in formal transition programs. The goal is to discuss these topics over a series of patient visits. Nurse practitioners have been pivotal in assisting physicians with the role of education. A review of 69 participating centers in the USA and Europe who care for children with heart disease found that only 29% of the centers have a formal transition program [27]. These centers indicated that they were more likely to transfer patients to adult centers when the patient or family asks to leave (69%), the patient experiences co-morbidities usually seen in adults (59%), or when the patient is considering getting pregnant (67%). While the role of medical providers in transitioning the care of children is more clearly delineated, that of the developing teen who may be emotionally and developmentally delayed, and that of their parents and families is less clear. “It is clear that the transition of care for a child with special health care needs is a continuum of changes, including moves from Hospital to Home, Home to School, School to School, Hospital to School, School to Work or College, and from Pediatric to Adult Health Care” [28]. Health care providers can assist with transitions through discussions with the child and their caregivers that focus on how the child's medical condition may impact their transition of care and overall well-being. There are many barriers to overcome in the transfer of care. Some, such as the lack of experienced providers who are experts in the care of adults with complex congenital cardiac disease are outside the control of the patient–physician relationship. It is accepted that long commutes to unfamiliar areas increase the likelihood that adolescents won't keep follow-up appointments [20]. This poses a difficult, dynamic and still unaddressed challenge when centralization of specialized care requires long commutes [5]. The process of transitioning roles is a challenge for the teen who must accept responsibility, and for the parent who must relinquish control to the teen. This is difficult for healthy teens and their parents but can be overwhelming and traumatic when dealing with life-threatening chronic conditions such as congenital cardiac disease. A successful transition program must address the expected stressors as family dynamics change in order to properly council and assist families who have difficulty letting go of their prior role in their child's healthcare. 5. Conclusions While research into clinical transitions and handovers has addressed different clinical conditions and organizational settings, little research has addressed the role and engagement of the children (patients) and their parents in the transition process and whether
different types of patient groups are differentially at risk for poor quality of care and patient safety risks during these transitions. We propose optimizing several key elements of medical care for children with congenital cardiac disease. The elements include the utilization of patient- and family-centered care in outpatient and inpatient health care facilities. Patients and their families should be included on health care system advisory and governance councils and committees in all areas of healthcare [11]. Information about healthcare associated infections should be provided to patients, families, and medical providers including established methods to prevent these infections. Health care organizations should establish mechanisms to include both patients and medical providers in structured handovers. Patients and their families should be informed about emergency response systems and be empowered to activate these systems. A clear transition of care plan and medical summary for adolescent and young adults with chronic physical and medical conditions should be jointly created by the patient, the family, and the medical provider before the patient moves from a child-centered to an adult-oriented health care system. Additional research is needed to provide medical personnel with greater clarity on the best methods to engage teens in their care, improve adherence to the medical plan, and improve the care of pediatric cardiac patients.
References [1] Bomba PA. Advance care planning along the continuum. Case Manager 2005;16(2): 68–72. [2] Wachter RM. Patient safety at ten: unmistakable progress, troubling gaps. Health Aff 2010;29(1):165–73. [3] Ovretvelt JC, Shekelle PG, Dy SM, et al. How does context affect interventions to improve patient safety? An assessment of evidence from studies of five patient safety practices and proposals for research. BMJ Quality & Safety 2011;20:604–10. [4] Boneva RS, Botto LD, Moore CA, Yang Q, Correa A, Erickson JD. Mortality associated with congenital heart defects in the United States trends and racial disparities, 1979–1997. Circulation 2001;103:2376–81. [5] Ipsos Mori. Safe and sustainable review of children's congenital heart services in England. Report of the public consultation. UK: National Health Service; August 24 2011. [6] Ittenbach RF, Cassedy AE, Marino BS, Spicer RL, Drotar D. Adherence to treatment among children with cardiac disease. Cardiol Young 2009;19:545–51. [7] Gilboa SM, Salemi JL, Nembhard WN, Fixler DE, Correa A. Mortality resulting from congenital heart disease among children and adults in the United States, 1999 to 2006. Circulation 2010;122:2254–63. [8] Wren C, O'Sullivan J. Survival with congenital heart disease and need for follow up in adult life. Heart 2001;85:438–43. [9] Committee on Quality of Health Care in America, Institute of Medicine. In: Kohn LT, Corrigan JM, Donaldson MS, editors. To err is human: building a safer health system. Washington, DC: National Academies Press; 1999. p. 11. [10] Mohr JJ, Barach P, Cravero JP, et al. Microsystems in health care: part 6. Designing patient safety into the microsystem. Jt Comm J Qual Saf 2003;29(8):401–8. [11] Johnson JK, Barach P. Clinical microsystems in health care: the role of human factors in shaping the microsystem. In: Carayon P, editor. Handbook of human factors and ergonomics in health care and patient safety. Hillsdale, NJ: Lawrence Erlbaum Associates; 2007. p. 95–106. [12] Harris BD, Hanson C, Christy C, et al. Strict hand hygiene and other practices shortened stays and cut costs and mortality in a pediatric intensive care unit. Health Aff 2011;30(9):1751–61. [13] Hobbs SE, Sodomka PF. Developing partnerships among patients, families, and staff at the Medical College of Georgia Hospital and Clinics. Jt Comm J Qual Improv 2000;25(5):268–76. [14] Australian Commission on Safety and Quality in Health Care. Patient centered care: improving quality and safety through partnership with patients and consumers. Sydney: ACSQHC; 2011. [15] Uhlig PN, Brown J, Nason AK, Camelio A, Kendall E, John M. Wisenberg patient safety awards. System innovation: Concord hospital. Jt Comm J Qual Improv 2002;28(12):666–72. [16] Johnson JK, Haskell H, Barach P. Case 16 the Lewis Blackman hospital patient safety act: it's hard to kill a healthy 15-year-old. In: McLaughlin CP, Johnson JK, Sollecito WA, editors. Implementing continuous quality improvement in health care: a global casebook. Sudbury, MA: Jones & Bartlett Learning; 2012. p. 303–12. [17] Ray EM, Smith R, Massie S, et al. Family alert: implementing direct family activation of a pediatric rapid response team. Jt Comm J Qual Patient Saf 2009;35(11): 575–80. [18] LaVelle BE. Patient and family activation of rapid response teams. Crit Connections 2011;10(2):18–9. [19] Evangelista LS, Shinnick MA. What do we know about adherence and self-care? J Cardiovasc Nurs 2008;23(3):250–7. [20] http://www.medicalhomeportal.org/medical-home.
C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79 [21] Hudsmith LE, Thorne SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007;92(10):927–30. [22] Reid GJ, Irvine MJ, McCrindle BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004;113(3):e197–205. [23] Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT. Lapse of care as a predictor for mortality in adults with congenital heart disease. Int J Cardiol 2008;125:62–5. [24] Kuhlthau KA, Bloom S, Van Cleave J, et al. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr MarApr 2011;11(2):136–43. [25] http://www.medicalhomeportal.org/living-with-child/transition-issues/ transition-to-adulthood.
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[26] American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110(6):1304–6. [27] Hilderson D, Saidi AS, VanDeyk K, et al. Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol 2009;30:786–93. [28] http://www.medicalhomeprotal.org/living-with-child/transition-issues. [29] Meadows AK, Bosco V, Tong E, Fernandes S, Saidi A. Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Curr Cardiol Rep 2009;11:291–7.
Contents lists available at SciVerse ScienceDirect
Progress in Pediatric Cardiology journal homepage: www.elsevier.com/locate/ppedcard
Improving cardiac care quality and safety through partnerships with patients and their families Cherissa C. Hanson a,⁎, Paul R. Barach b, c a b c
Department of Anesthesia and Pediatrics, Division of Pediatric Critical Care Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, USA Department of Anesthesia and Emergency Medicine, University of Utrecht, Netherlands University of Stavanger, Norway
a r t i c l e
i n f o
Keywords: Pediatrics Patient safety Cardiac care Congenital heart disease Family centered care
a b s t r a c t The role of patients, families, and medical providers to improve outcomes for children with cardiac disease continues to evolve over time. Healthcare organizations are struggling to involve patients in meaningful ways and learn from their experience. Participation by parents and families is critical to achieving optimal medical care for pediatric cardiac patients. Confusion about the roles of patients, clinicians, and information transparency, can lead to a loss of continuity and a lack of adherence to medical therapies. This can result in poor outcomes for children with chronic illnesses such as congenital cardiac disease. This article aims to overview and clarify the roles and responsibilities of the patient and their family in helping to improve outcomes for children with congenital cardiac disease. We discuss general principles of family centered care, adherence, and transition of care for young adults with chronic illness. We propose goals and delineate key elements for optimal outcomes for congenital cardiac patients and lifelong wellness. There are steps that hospitals can take to optimize the contribution of the parent and family. Organizations can go beyond mainstream frameworks for quality improvement by fostering patient-centered care and create higher quality and value for their patients and their communities. © 2011 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Although patient-centered care and patient satisfaction are becoming a major focus in healthcare, doctors and nurses around the world are struggling with the concept. Poor coordination of care across settings results in discontinuity of care, confusion, and child harm leading to re-hospitalizations that are costly, potentially harmful, and often avoidable. This is bolstered by evidence of benefits in clinical outcomes, patient experiences and the business case that supports moving towards ‘patient-centered care’. Health care organizations have devoted considerable effort to applying established strategies of quality improvement [1]. These programs have focused, with mixed degrees of success, on systems for risk management, incident reporting and quality assurance [2]. Despite such industry-based approaches, research suggests that current quality improvement strategies, such as clinical audit and feedback, are insufficient to ensure the widespread implementation of patient-centeredness throughout an organization [3]. Historically children born with childhood cardiac disease were not expected to survive into adulthood. Childhood heart disease comprises congenital heart disease (CHD) and heart disease, such as arrhythmia, myocarditis, cardiomyopathy, Kawasaki disease and rheumatic heart disease, acquired at a young age. Congenital heart disease is not a single
disease but a general name for malformations of the heart, heart valves or major blood vessels which are present at birth. Prior to 1981 the death rate for children with congenital heart disease was 92 deaths per 100,000 live births in the first year of life and 4.6 deaths per 100,000 children between the age of one and five years [4]. Although there is no indication that the incidence of CHD is increasing the prevalence is predicted to increase. In particular, there are an increasing number of adults with congenital heart disease who are not well served by the existing health care system [5]. Enhanced medical interventions have significantly improved the survival rates for infants and children. There has been an increased focus on the quality of life of these individuals and their families. Recent studies have identified the neuro-developmental, psychosocial and behavioral outcomes that may have a negative impact on the schooling and activities of individuals with childhood heart disease [6]. By 2006 the mortality resulting from any type of congenital heart disease had decreased to 41 per 100,000 live births (infants less than one year), to 1.4 deaths per 100,000 population of that age (children 1 to 4 years), and to 0.41 deaths per 100,000 population of that age (children 5 to 17 years) [7]. Currently, for those surviving infancy the predicted survival to 16 years of life is 96% [8]. 2. Family centered care
⁎ Corresponding author at: Pediatric Critical Care Medicine, 214 MacNider Building, Chapel Hill, NC 27599-7221, USA. Tel.: + 1 919 966 7495; fax: + 1 919 966 6164. E-mail address: [email protected] (C.C. Hanson). 1058-9813/$ – see front matter © 2011 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ppedcard.2011.12.012
Managing sick children in a reliable and safe manner requires patients and providers to partner together to achieve optimal outcomes.
74
C.C. Hanson, P.R. Barach / Progress in Pediatric Cardiology 33 (2012) 73–79
Table 1 Microsystem dimensions and operations definitions [11]. Dimensions
Operational definition
1. Leadership
The role of leadership is to balance setting and reaching collective goals, empower individual autonomy as well as accountability through building knowledge, respectful action, and reviewing and reflecting 2. Organizational support The larger organization looks for ways to connect to and facilitate the work of the microsystem and coordinate the hand-offs between microsystems 3. Staff focus There is selective hiring of the right kind of people; the orientation process is designed to fully integrate new staff into culture and work roles; expectations of staff are high regarding performance, continuing education, professional growth, and networking 4. Education and training All clinical microsystems, regardless of whether they are part of an academic medical center, have responsibility for the ongoing education and training of staff and for aligning daily work roles with training competencies; academic clinical microsystems have the additional responsibility of training students 5. Interdependence The interaction of staff is characterized by trust, collaboration, willingness to help each other, appreciation of complementary roles, respect and recognition that all contribute individually to a shared purpose 6. Patient focus The primary concern is to meet all patient needs — caring, listening, educating, and responding to special requests, innovating against needs, and ensuring smooth service flow 7. Community and market focus The microsystem is a resource for the community and the community is a resource to the microsystem; there is a focus on establishing the relationship with the community 8. Performance results Performance focuses on patient outcomes, avoidable costs, streamlining delivery, using data feedback, promoting positive competition, and frank discussions about performance 9. Process improvement An atmosphere for learning and redesign is supported by the continuous monitoring of care, use of benchmarking, frequent tests of change, and a staff that has been empowered to innovate 10. Information and information Information is THE connector — staff to patients, staff to staff, needs with actions to meet needs; technology can facilitate effective technology communication and multiple formal and informal channels are used to keep everyone informed all the time, listen to everyone's ideas, and ensure that everyone is connected on important topics
The Institute for Healthcare Improvement has defined family centered care as “health care that establishes a partnership among practitioners, patients and their families (when appropriate) to ensure that decisions respect patients' wants, needs and preferences and solicit patients' input on the education and support they need to make decisions and participate in their own care.” [9] Clarity around role responsibility and the role of patient advocacy cannot be underestimated. In the past, providers served primarily to advise patients of what should be done. As health care has begun to partner with patients and their families, a new role for the health care provider and the patient has emerged. Adopting the concept and implementing the practice of meaningful partnering with patients and families require defining clear roles and responsibilities for all parties involved. The patient is expected to be an active participant of the team. A clear delineation of patient rules and responsibilities at the first encounter with providers may reduce misunderstandings, errors, and miscommunications. Core concepts shared by patients and their providers such as dignity and respect, information sharing, participation, and collaborative shared decision making are the hallmarks of family centered care. The translation of these concepts into commonly accepted patient responsibilities will clarify and establish the patient's role unambiguously as the center of the clinical microsystem [10]. The clinical microsystem is a group of clinicians and staff working together to provide care for the patient. Clinical microsystems provide a conceptual and practical framework for thinking about the organization and delivery of care. The microsystem dimensions and operational definitions can be seen in Table 1 [11]. Table 2 Examples of patient and family advisory roles in health care systemsa. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. a
Patient safety Quality improvement Facility architecture and design Use of information technology Pain management Patient/family education Discharge/transition planning Palliative/end of life care Staff orientation and education Service excellence Ethics Diversity/cultural competency
Ref [13] page 23.
Patients traditionally are expected to provide complete and accurate information to medical providers, to keep appointments and notify providers if this is not possible, to participate in discussions regarding treatment, and comply with treatments or discuss alternatives with providers. However, as patients learn more about the occurrence of errors in the medical system, the role of the patient has continued to expand. For example, many centers now empower patients to question providers about anything that does not seem right to them knowing that medical providers and medical systems are fallible. There are many ways in which patients and their primary caregivers can contribute to the optimization of care. For example, they can be advocates of hand hygiene practices proven to prevent hospital acquired infections by making clinicians aware when they don’t wash their hands [12]. In addition, patients and their families can assist with the coordination of care and advocate for improvements to the health care system. Patients collaborate with healthcare systems to improve healthcare processes by serving on hospital committees and giving feedback on hospital policies [13]. Their role on advisory and governance committees includes but is not limited to helping plan or remodel patient care areas, providing feedback to hospital leadership about patients' needs and concerns, or how to educate patients on safety and quality matters [14]. Table 2 lists areas in healthcare where patients or families can serve as advisors to health care organizations. As children, this responsibility falls primarily on the parents or the primary caregivers of the patient. However, as children move into adolescence and adulthood this role and the responsibilities therein can transition from the parent and be shared with the child. Patient- and family-centered care relies on communication between patients, families, and the medical team for planning, delivery, and evaluation of care. Information sharing between medical providers and their patients is essential in pediatrics where patients are reliant on family members for decision making. Allowing patients Table 3 Risk factors for non-adherence to medical therapies [19]. 1. 2. 3. 4. 5. 6.
Older age Single parent household Smoking Use of illicit street drugs Tattoos or multiple body piercings Sedentary lifestyle
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and their caregivers to be present at bedside rounds when the plan of care is created and during bedside clinical handoffs (handovers) promotes education, accountability and a culture of safety [15]. Educating families about potential complications that may occur to their loved ones and providing them with a way to call for help quickly is another way that providers can facilitate patient advocacy. Parents
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often recognize subtle differences in their child's condition and are distressed when providers ignore these pleas for help which lead to lost opportunities to engage the child, catch system failings and prevent patient harm [16]. This has led to the implementation of family activation of pediatric rapid response systems in medical centers across the United States [17]. Despite the concerns of medical
Fig. 1. Individual health plan [25].
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Fig. 1 (continued).
providers about allowing families to activate emergency response systems within the hospital there has been little abuse of the system. In a recent review of 25 United States hospitals, 18 hospitals now allow direct patient and family activation of their rapid response teams with great success [18].
3. Adherence Adherence is defined as the ability to follow the recommendations of healthcare professional's treatment regimens [19]. Children with congenital heart disease often have residual hemodynamic and
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electrophysiological consequences that may require long-term treatment with complex regimens. A patient's wellbeing may be greatly impacted by their and their family's ability to manage multiple medication regimens and to adhere to lifestyle changes such as diet and exercise restrictions. Failure to comply with the recommended treatment may even be life threatening and for many children and adults this pressure creates ongoing anxiety and can be overwhelming. A recent review about adherence of children or adolescents with cardiac disease or cardiac failure found six risk factors for non-adherence to medical therapies [6]. These are summarized in Table 3. The clinical outcomes associated with non adherence in children who underwent cardiac transplantation included increased episodes of rejection and increased mortality [6]. These articles barely scratch the surface of the consequences of non adherence. Additional research from biological, cognitive, and psychological perspectives into what motivates patient adherence among congenital cardiac patients is needed to further our understanding on how best to manage these children. 4. Child maturation and transition of care The concept of a “medical home” is an approach to comprehensive primary care that includes the following key components: familycentered partnership, community-based system, transitions, and value [20]. The primary care clinician through partnership with the family can support the family as they navigate through transitions of care to assure that the medical and non-medical needs of the child are met to optimize the potential growth and development of the child. The transition of care for pediatric patients from pediatric providers to adult providers is defined as “a purposeful, planned process that addresses the medical, psychological, and educational/vocational
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needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adultoriented health care systems” [21]. The goal of a formal transition program for patients is to prepare young adults for autonomous self-management of their care in conjunction with adult health care providers. However, in Canada less than half of expected patients with congenital cardiac disease attended at least 1 follow-up appointment with a recommended adult care provider before the age of 22 [22]. In the United States, 63% of adults with American Heart Association Class II or Class III congenital heart disease have a lapse of care of more than two years following the transition from a pediatric to an adult cardiology clinic. The median duration of lapses of care was 10 years [23]. Efforts to develop adolescent friendly patient- and family-centered care have been underway since 1987, when the US Surgeon General called for “family-centered, community-based, coordinated care for children with special health care needs and their families” [24]. Patient and family centered care aims to provide resources for adolescents and providers to aid communication and facilitate selfmanagement skills, and to promote systematic changes that support patient self care. This includes the transition of care from childhood subspecialists to the adult primary and specialty health care providers. The American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine released a joint consensus statement in 2002 regarding the transitions of young adults with special health care needs. In this statement multiple steps are listed as critical to successful transitioning to adult oriented health care. First, a health care provider must be identified that is willing to assume responsibility for current care, care coordination, and future health planning. Next, a portable and accessible medical health summary should be prepared and maintained. Fig. 1 depicts an example of a medical
Fig. 2. Transition plan.
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Table 4 Patient education topics important for successful transition of care [29]. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Residual hemodynamic considerations Contraception and pregnancy planning Endocarditis considerations Arrhythmia considerations Non-cardiac surgery considerations Non-cardiac medical considerations Career, vocational, and insurance planning Lifestyle issues End-of-life discussions Skills Training
health summary for health care providers provided online at the Utah Medical Home Portal [25]. A written transition plan should be created with the patient and family and given to the family by the age of 14. Fig. 2 depicts an example of a transition plan for health care providers. The plan should include what services will be needed to care for the patient, who will provide them, and how they will be financed. The patient transition plan should be reviewed and revised at least yearly [26]. Transition of care is a formal part of pediatric training programs. Table 4 reviews common curriculum topics in formal transition programs. The goal is to discuss these topics over a series of patient visits. Nurse practitioners have been pivotal in assisting physicians with the role of education. A review of 69 participating centers in the USA and Europe who care for children with heart disease found that only 29% of the centers have a formal transition program [27]. These centers indicated that they were more likely to transfer patients to adult centers when the patient or family asks to leave (69%), the patient experiences co-morbidities usually seen in adults (59%), or when the patient is considering getting pregnant (67%). While the role of medical providers in transitioning the care of children is more clearly delineated, that of the developing teen who may be emotionally and developmentally delayed, and that of their parents and families is less clear. “It is clear that the transition of care for a child with special health care needs is a continuum of changes, including moves from Hospital to Home, Home to School, School to School, Hospital to School, School to Work or College, and from Pediatric to Adult Health Care” [28]. Health care providers can assist with transitions through discussions with the child and their caregivers that focus on how the child's medical condition may impact their transition of care and overall well-being. There are many barriers to overcome in the transfer of care. Some, such as the lack of experienced providers who are experts in the care of adults with complex congenital cardiac disease are outside the control of the patient–physician relationship. It is accepted that long commutes to unfamiliar areas increase the likelihood that adolescents won't keep follow-up appointments [20]. This poses a difficult, dynamic and still unaddressed challenge when centralization of specialized care requires long commutes [5]. The process of transitioning roles is a challenge for the teen who must accept responsibility, and for the parent who must relinquish control to the teen. This is difficult for healthy teens and their parents but can be overwhelming and traumatic when dealing with life-threatening chronic conditions such as congenital cardiac disease. A successful transition program must address the expected stressors as family dynamics change in order to properly council and assist families who have difficulty letting go of their prior role in their child's healthcare. 5. Conclusions While research into clinical transitions and handovers has addressed different clinical conditions and organizational settings, little research has addressed the role and engagement of the children (patients) and their parents in the transition process and whether
different types of patient groups are differentially at risk for poor quality of care and patient safety risks during these transitions. We propose optimizing several key elements of medical care for children with congenital cardiac disease. The elements include the utilization of patient- and family-centered care in outpatient and inpatient health care facilities. Patients and their families should be included on health care system advisory and governance councils and committees in all areas of healthcare [11]. Information about healthcare associated infections should be provided to patients, families, and medical providers including established methods to prevent these infections. Health care organizations should establish mechanisms to include both patients and medical providers in structured handovers. Patients and their families should be informed about emergency response systems and be empowered to activate these systems. A clear transition of care plan and medical summary for adolescent and young adults with chronic physical and medical conditions should be jointly created by the patient, the family, and the medical provider before the patient moves from a child-centered to an adult-oriented health care system. Additional research is needed to provide medical personnel with greater clarity on the best methods to engage teens in their care, improve adherence to the medical plan, and improve the care of pediatric cardiac patients.
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