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2016 National Nursing Research Roundtable Summary

The 2016 National Nursing Research Roundtable: Improving Symptom Outcomes for Persons with Complex Chronic Conditions through Continuity of Care

The 2016 NNRR was co-sponsored by the Emergency Nurses Association (ENA) and the National Institute of Nursing Research (NINR), part of the National Institutes of Health. Representatives from over a dozen professional nursing organizations met to discuss the importance of continuity of care (CoC) within the context of nursing practice, research, and education.

Outlining the Topic of CoC

NINR Director Dr. Patricia Grady provided an update on NINR research, outlined the topic of CoC, and provided evidence for improvements in care processes, outcomes, and costs in association with enhanced CoC. Despite demonstration of benefits from CoC in individual studies (Weir, McAlister, Majumdar, & Eurich, 2016; Bayliss et al., 2015; Chan, You, Huang, & Ting, 2012), Dr. Grady noted that more comprehensive reviews of the topic have shown that the evidence is mixed or of low quality (Aubin et al., 2012; Health Quality Ontario, 2013; Puntis, Rugkåsa, Forrest, Mitchell, & Burns, 2015). Research strategies are hampered by lack of a clear definition of CoC (Uijen, Schers, Schellevis, & van den Bosch, 2012). For example, there are complicated overlaps and differences between CoC with other care concepts, such as integrated care, coordinated care, patient-centered care, and transitional care. In addition, the primary measured outcomes in CoC studies are quantitative, such as the number of emergency department (ED) visits, hospitalizations, and readmissions, and costs. However, little or no attention is given to the role of CoC in improving specific symptom outcomes (Health Quality Ontario, 2013). Dr. Grady added that health disparities may also limit the potential benefits of CoC, due to barriers such as accessibility, health literacy, and affordability.

Challenges in Measuring CoC

Dr. Denise Hynes of the University of Illinois at Chicago and the U.S. Department of Veterans Affairs provided the keynote address and a more extensive discussion on the difficulty of measuring CoC. She noted that reliance on quantitative claims data overlooks the interpersonal nature of the CoC relationship; hence, she recommended interpreting claims-based data in concert with patient reports. Dr. Hynes described the Veterans Administration’s Patient Aligned Care Teams (VA-PACT) initiative, which encompasses the key principles of CoC: it is patient-driven, team-based, efficient, comprehensive, and incorporates good communication and improved coordination. The VA-PACT studies found a lower likelihood of hospitalization and mortality for veterans who had greater continuity with their assigned VA primary care providers (Nelson et al., 2014).

Dr. Hynes raised several questions regarding the design of new care models. She asked whether particular populations would benefit more from CoC programs. These populations include high-risk patients, older adults, and patients with low literacy or cultural barriers—populations that often have frequent ED visits and preventable hospitalizations. For example, end-stage renal disease (ESRD) patients are disproportionately high users of health care. Nevertheless, they are vulnerable to poor outcomes due to care that is often fragmented, costly, and ineffective. Dr. Hynes described an initiative supported by the Patient-Centered Outcomes Research Institute (PCORI) that creates a patient-centered medical home for kidney disease (Porter et al. 2015). This approach could lead to fewer hospitalizations, infections, and ED visits through improvements in care coordination, preventive care, kidney disease knowledge, and medication and nutrition compliance.

Dr. Hynes suggested that health information technology (HIT) may be a key factor in future CoC strategies. HIT can facilitate communication between patients and providers and strengthen the evaluation of health care team effectiveness. HIT is also fundamental to the creation of dashboards for clinical decision-making and enhancement of electronic health records (EHRs) with incorporation of patient reports and other information. For example, PCORI’s National Patient-Centered Clinical Research Network (PCORNet) (Califf, 2014) is developing a data network that enables secure data sharing across its study sites. PCORNet creates the infrastructure to support larger studies in clinical outcomes research involving patients, providers, and health system leaders. PCORNet includes 13 collaborative Clinical Data Research Networks and 20 Patient-Powered Research Networks (formed by patient advocacy organizations) across the United States. By bringing research and patient care together, this innovative health data network will explore the questions that matter most to patients and their families.

Scientific Presentations

Drs. Coretta Jenerette, David Bekelman, and Ann Kolanowski provided scientific presentations concerning care in complex chronic conditions. Topics included the health care needs of sickle cell anemia patients, and improving symptoms and quality of life in chronic heart failure and dementia patients. 

CoC Challenges in Sickle Cell Disease
Dr. Jenerette (University of North Carolina at Chapel Hill) presented data on changes in sickle cell disease (SCD) mortality rates from 1979 to 2005 (Lanzkron, Carroll, & Haywood, 2013). The data showed a steady decrease in deaths among children that could be attributed to universal newborn screening, hydroxyurea treatments, and other factors. However, Dr. Jenerette noted a consistent increase in deaths among adults during this same period. Risk factors for early death in adults with SCD included pulmonary hypertension, renal impairment, and having several SCD crises per year that required hospitalization.

Dr. Jenerette described the challenges that adults with SCD face in pain management. She added that many of these patients delay seeking emergency care and interventions because of health care system barriers, such as inadequate care from health care providers that could be associated with health-related stigma (Jenerette, Brewer, & Ataga, 2014). For example, some clinicians may withhold pain medication from SCD patients because the patients are viewed as drug-seekers. As a result, the patients may suffer overwhelming pain that further compromises their ability to communicate and function. Although immediate pain control is recommended during SCD crises, many patients report waiting several hours in the ED before receiving analgesia. Dr. Jenerette described a study that she and her colleagues conducted on nurse attitudes towards SCD patients across hospital units. They found that nurses in certain non-ED units had negative views of SCD patients, similar to the mindset of ED personnel (Jenerette, Pierre-Louis, Matthie, & Girardeau, 2015).

Dr. Jenerette provided a more extensive description of the role of navigators for complex care in the context of SCD. Health care professional navigators/social workers guide the patient through treatment and care at the medical center. In addition, health care navigators/social workers offer psychosocial assessment and support, assist with referrals, coordinate with community case managers, and provide access to additional resources. The role of layperson patient navigators lies within a public health strategy; their activities emphasize health management within the community rather than the clinical setting. Dr. Jenerette discussed employing individualized care plans for “high utilizers” of the health care system and improving patient-provider communications. She also encouraged increased ED-primary care communications and greater use of EHRs to facilitate CoC. In addition, Dr. Jenerette endorsed the establishment of a national SCD registry to obtain better data and provide a venue for research participation.

CoC Challenges in Heart Failure
Dr. Bekelman (University of Colorado School of Medicine and Veterans Administration) focused on heart failure (HF) as a chronic and complex condition of aging: the clinical course is highly unpredictable, there are multiple comorbidities, and the diet and medication routines are complicated. In addition, CoC of HF is hampered by the involvement of many different clinicians, insurance issues, and a high risk for readmission (albeit for reasons other than HF). Frequently, readmissions begin in the ED. Dr. Bekelman cited research showing that patients, caregivers, and clinical staff provide different reasons for readmission (Annema, Luttik, & Jaarsma, 2009). For example, patients and caregivers are more likely to attribute readmission to worsening HF and non-adherence to diet, whereas health care providers cite other factors, such as other diseases. Reviews of the literature identify several components of care transitions that can reduce HF readmissions, including patient education, inclusion of caregivers in care transition planning, more intense follow-up after discharge, and medication reconciliation (Albert et al., 2015).

Dr. Bekelman described his research, which has shown a correlation between depression and increased numbers of HF symptoms, as well as decreased quality of life with more HF symptoms (Bekelman et al., 2007). Dr. Bekelman proposed that depression could be a factor in hospitalization. He added that psychosocial factors, including anxiety and trauma, should be considered in symptom management. To investigate this hypothesis, Dr. Bekelman is conducting an NINR-supported, multi-site, randomized clinical trial to evaluate a psychosocial care and palliative symptom management intervention. It will be delivered primarily by phone and will involve collaboration among primary care, cardiology, mental health, and palliative care specialists. Dr. Bekelman raised the potential for broader and earlier use of palliative care in HF to prevent or relieve physical, psychosocial, spiritual, and practical suffering. He noted that palliative care models, which do not require participation of palliative care specialists, should be employed at any stage of a serious illness.

Challenges in Managing Delirium in Dementia Patients
Rounding out the formal presentations, Dr. Kolanowski of Pennsylvania State University discussed the burden of dementia patients’ behavioral symptoms on caregivers and nursing staff. She said that psychoactive drugs are used widely to manage severe behavioral symptoms and that this practice follows long-established consensus guidelines. Instead of psychoactive drugs, Dr. Kolanowski recommended initial treatment of severe behavioral symptoms with non-pharmacologic approaches. She suggested that non-pharmacologic approaches can address underlying causes of symptoms, such as unmet needs or environmental triggers. Dr. Kolanowski described the randomized clinical trials that she and her colleagues conducted to test activity interventions that matched individuals’ interests and functional levels. The researchers found reduced agitation with the interventions, as well as persistent improvements in mood, anxiety, and passivity (Kolanowski, Litaker, Buettner, Moeller, & Costa, 2011). Dr. Kolanowski said that the outcomes of non-pharmacologic approaches compare favorably with drug interventions. She cautioned that clinical implementation of non-pharmacologic approaches is problematic due to time, education, and communication limitations. Dr. Kolanowski described a web-based nursing home toolkit that she and her colleagues have assembled ( The toolkit is a resource for dementia care professionals about non-pharmacologic approaches.

Dr. Kolanowski discussed the challenge of managing delirium. She said that delirium is a common cognitive symptom in older adults, with dementia patients being at highest risk. She noted that delirium in older adults is also associated with increased risk for falls, functional decline, prolonged hospital stays, and institutionalization. Clinicians are hampered by a lack of awareness and understanding of delirium, as well as difficulty in assessing delirium and employing effective treatments for it. For example, patient inattention is often ignored when it may be an early sign of hypoactive delirium. She added that higher nurse-to-patient ratios have been shown to increase the accuracy of delirium screening. Dr. Kolanowski suggested that asking patients to recite months of the year backwards is a quick, easy, and effective delirium screening test. Dr. Kolanowski discussed research showing that recognition of the conditions and symptoms associated with delirium, such as pain, infections, stress, surgery, and multiple and/or mismanaged medications, may help staff in identifying delirium (Inouye, Westendorp, & Saczynski 2014). Dr. Kolanowski also described results from a meta-analysis of potential non-pharmacologic preventive interventions for delirium. These interventions include reorientation, nutrition, sleep strategies, and hearing and vision adaptations (Hshieh et al., 2015).

Break-Out and Discussion Sessions: Meeting Outcomes and Recommendations

The break-out and discussion sessions of the Roundtable concentrated on: 1) the practice, education and policy implications of care continuity on improving symptom outcomes for persons with complex chronic conditions, and 2) strategies NNRR organizations could use to improve symptom outcomes and decrease health disparities for persons with complex chronic conditions.

The discussion reiterated CoC themes raised by the preceding presentations. These included improving communications involving patients, family members, caregivers, and health care providers, as well as communications between health care units and settings. The potential for EHRs to facilitate CoC was emphasized. Many barriers to the functionality of existing EHRs were identified, such as differences in coding and the exclusion of underserved patient populations. Recommended improvements included the development of common standards for EHRs, the use of culturally informed data, and the expansion of effective EHR systems that function well across health care settings.

The diversity of patient populations and the needs of individuals are gaining recognition in health care, including the effect of social determinants on symptoms, such as culture, environment, and family dynamics. Qualitative research and mixed methods may be valuable in further exploration of these issues. The discussion groups noted the importance of a diverse nursing workforce that reflects the patient population. The discussion groups also cited the need to adapt the nursing school curriculum to address the patient population’s holistic care which considers physiological, psychosocial, and cultural conditions. Participants urged a greater educational focus on pragmatic clinical care. This includes management of complex chronic conditions, CoC, and symptom identification. These topics should also be elements of family caregiver education.

Multidisciplinary teams are essential for developing and managing complex care plans and successful CoC. Potential obstacles to the wide-scale implementation of CoC include: time constraints that sometimes hamper efforts to improve interprofessional interactions; concern about the costs of team-based care; meritocracy and reward systems that may dissuade adoption of CoC; and maintaining nursing identity within the context of multidisciplinary teams. The diversity of the NNRR member organizations represents research, clinical, and academic expertise. The shared interests of the NNRR member organizations generate opportunities to work together towards solutions to these obstacles to advance the implementation of CoC. Community health workers, lay and professional navigators, and others can bring additional ideas and areas of knowledge to team-based care.


The 2016 NNRR provided leaders of nursing organizations that have a research mission with creative and thoughtful ideas regarding the ways in which their organizations might move CoC forward. The meeting was also an opportunity for the member organizations to collaborate across specialities. Nurse scientists are at the forefront of multidisciplinary teams that are developing the evidence base for CoC and translating those findings into practice and policy.


Albert, N.M., Barnason, S., Deswal, A., Hernandez, A., Kociol, R., Lee, E., Paul, S., Ryan, CJ., White-Williams, C., American Heart Association Complex Cardiovascular Patient and Family Care Committee of the Council on Cardiovascular and Stroke Nursing, Council on Clinical Cardiology, & Council on Quality of Care and Outcomes Research. (2015). Transitions of care in heart failure: a scientific statement from the American Heart Association. Circulation: Heart Failure. 8(2), 384-409.

Annema, C., Luttik, M.L., & Jaarsma, T. (2009). Reasons for readmission in heart failure: Perspectives of patients, caregivers, cardiologists, and heart failure nurses. Heart & Lung. 38(5), 427-34.

Aubin, M., Giguère, A., Martin, M., Verreault, R., Fitch, M.I., Kazanjian, A., & Carmichael, P.H. (2012). Interventions to improve continuity of care in the follow-up of patients with cancer. Cochrane Database of Systematic Reviews. 7:CD007672.

Bayliss, E.A., Ellis, J.L., Shoup, J.A., Zeng, C., McQuillan, D.B., & Steiner, J.F. (2015). Effect of continuity of care on hospital utilization for seniors with multiple medical conditions in an integrated health care system. Annals of Family Medicine. 13(2), 123-9.

Bekelman, D.B., Havranek, E.P., Becker, D.M., Kutner, J.S., Peterson, P.N., Wittstein, I.S., Gottlieb, S.H., Yamashita, T.E., Fairclough, D.L., & Dy, S.M. (2007). Symptoms, depression, and quality of life in patients with heart failure. Journal of Cardiac Failure. 13(8), 643-8.

Califf, R.M. (2014). The Patient-Centered Outcomes Research Network: a national infrastructure for comparative effectiveness research. North Carolina Medical Journal. 75(3), 204-10.

Chan, C.L., You, H.J., Huang, H.T., & Ting, H.W. (2012). Using an integrated COC index and multilevel measurements to verify the care outcome of patients with multiple chronic conditions. BMC Health Services Research. 12, 405.

Health Quality Ontario. (2013). Continuity of care to optimize chronic disease management in the community setting: an evidence-based analysis. Ontario Health Technology Assessment Series. 13(6), 1–41. Retrieved August 22, 2016, from

Hshieh, T.T., Yue, J., Oh, E., Puelle, M., Dowal, S., Travison, T., & Inouye, S.K. (2015). Effectiveness of multicomponent nonpharmacological delirium interventions: a meta-analysis. JAMA Internal Medicine. 175(4), 512-20.

Inouye, S.K., Westendorp, R.G., & Saczynski, J.S. (2014). Delirium in elderly people. The Lancet. 383(9920), 911-22.

Jenerette, C.M., Brewer, C.A., & Ataga, K.I. (2014). Care seeking for pain in young adults with sickle cell disease. Pain Management Nursing. 15(1), 324-30.

Jenerette, C.M., Pierre-Louis, B.J., Matthie, N., & Girardeau, Y. (2015). Nurses' attitudes toward patients with sickle cell disease: a worksite comparison. Pain Management Nursing. 16(3), 173-81.

Kolanowski, A., Litaker, M., Buettner, L., Moeller, J., & Costa, P.T., Jr. (2011). A randomized clinical trial of theory-based activities for the behavioral symptoms of dementia in nursing home residents. Journal of the American Geriatrics Society. 59(6), 1032-41.

Lanzkron, S., Carroll, C.P., & Haywood, C., Jr. (2013). Mortality rates and age at death from sickle cell disease: U.S., 1979-2005. Public Health Reports. 128(2), 110-6.

Nelson, K., Sun, H., Dolan, E., Maynard, C., Beste, L., Bryson, C., Schectman, G., & Fihn, S.D. (2014). Elements of the patient-centered medical home associated with health outcomes among veterans: the role of primary care continuity, expanded access, and care coordination. Journal of Ambulatory Care Management. 37(4), 331-8.

Nursing Home Toolkit. Retrieved August 22, 2016, from 

Porter, A.C., Fitzgibbon, M.L., Fischer, M.J., Gallardo, R., Berbaum, M.L., Lash, J.P., Castillo, S., Schiffer, L., Sharp, L.K., Tulley, J., Arruda, J.A., & Hynes, D.M. (2015). Rationale and design of a patient-centered medical home intervention for patients with end-stage renal disease on hemodialysis. Contemporary Clinical Trials. 42, 1-8.

Puntis, S., Rugkåsa, J., Forrest, A., Mitchell, A., & Burns, T. (2015). Associations between continuity of care and patient outcomes in mental health care: a systematic review. Psychiatric Services. 66(4), 354-63.

Uijen, A.A., Schers, H.J., Schellevis, F.G., & van den Bosch, W.J. (2012) How unique is continuity of care? A review of continuity and related concepts. Family Practice. 29(3), 264-71

Weir, D.L., McAlister, F.A., Majumdar, S.R., & Eurich, D.T. (2016). The Interplay Between Continuity of Care, Multimorbidity, and Adverse Events in Patients With Diabetes. Medical Care. 54(4), 386-93.

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