Complex Chronic Illness Research Articles

Hospital Readmissions in Patients with Cirrhosis: A Systematic Review.

Hospital readmission is a significant problem for patients with complex chronic illnesses such as liver cirrhosis. We aimed to describe the range of readmission risk in patients with cirrhosis and the impact of the model for end-stage liver disease (MELD) score. We conducted a systematic review of studies identified in Ovid MEDLINE, PubMed, EMBASE, CINAHL, the Cochrane Library, Scopus, Google Scholar, and ClinicalTrials.gov from 2000 to May 2017. We examined studies that reported early readmissions (up to 90days) in patients with cirrhosis. Studies were excluded if they did not examine the association between readmission and at least 1 variable or intervention. Two reviewers independently extracted data on study design, setting, population, interventions, comparisons, and detailed information on readmissions. Of the 1363 records reviewed, 26 studies met the inclusion and exclusion criteria. Of these studies, 21 were retrospective, and there was significant variation in the inclusion and exclusion criteria. The pooled estimate of 30-day readmissions was 26%(95% confidence interval [CI], 22%-30%). Few studies examined readmission preventability or the relationship between readmissions and social determinants of health. Reasons for readmission were highly variable. An increased MELD score was associated with readmissions in most studies. Readmission was associated with increased mortality. Hospital readmissions frequently occur in patients with cirrhosis and are associated with liver disease severity. The impact of functional and social factors on readmissions is unclear.

Children's Experience of Symptoms: Narratives through Words and Images.

Children who live with a complex chronic or life-threatening illness face extraordinary challenges. Whether they are receiving disease-oriented treatment (aimed at potential cure or prolongation of life) or palliative treatment—or both concurrently—our challenge is to enhance their comfort and minimize their distress. Symptom management is thus a critical component of pediatric palliative care. Symptoms may be either physical or psychological in nature (or a confluence of both) and their effective management has a direct impact on the child’s quality of life. This article provides an integrative overview of children’s experience of selected physical and psychological symptoms, as expressed through their words and images. Understanding their perspectives is an essential component in the design and provision of optimal symptom management. Included, as well, are examples from siblings—a reminder of the profound impact of illness on these children who also “live” the experience, albeit in a different way. The symptoms that are described are pain, nausea and vomiting, fatigue, weakness, seizures, hair loss, depression, and anxiety. Although psychological symptoms are often inextricable from the physical, they may also present independently as part of the overall illness experience.

Supported self-management for cancer survivors to address long-term biopsychosocial consequences of cancer and treatment to optimize living well.

As individuals are living longer with cancer as a chronic disease, they face new health challenges that require the application of self-management behaviors and skills that may not be in their usual repertoire of self-regulatory health behaviors. Increasing attention is focused on supported self-management (SSM) programs to enable survivors in managing the long-term biopsychosocial consequences and health challenges of survivorship. This review explores current directions and evidence for SSM programs that enable survivors to manage these consequences and optimize health. Cancer survivors face complex health challenges that affect daily functioning and well being. Multiple systematic reviews show that SSM programs have positive effects on health outcomes in typical chronic diseases. However, the efficacy of these approaches in cancer survivors are in their infancy; and the 'one-size' fits all approach for chronic disease self-management may not be adequate for cancer as a complex chronic illness. This review suggests that SSM has promising potential for improving health and well being of cancer survivors, but there is a need for standardizing SSM for future research. Although there is increasing enthusiasm for SSM programs tailored to cancer survivors, there is a need for further research of their efficacy on long-term health outcomes.

Data-Driven Approach to Defining the Emergency Department Frequent Attender Using a Cohort of 10 Years.

To identify, based on the measure of resource utilization, the number of visits per calendar year that defines the emergency department (ED) frequent attender; and examine for significant trends in patient characteristics and outcomes which may support the use of our definition. We conducted a retrospective observational study of electronic clinical records of all ED visits over a 10-year period from January 2005 to December 2014 to an urban tertiary general hospital. We defined the ED frequent attender based on the number of ED attendances per calendar year which would yield a patient group representing more than 20% of all patient visits. Chi-square tests were conducted on each categorical factor individually to assess if they were independent of time, and the Student's t-test was used to assess continuous variables on their association with being a frequent attender. 1.381 million attendance records were analyzed. Patients who attended three or more times per year accounted for about 22.1% of all attendances and were defined as frequent attenders. They were associated with higher triage acuity, complex chronic illnesses, greater 30-day mortality for patients with three to six visits, and increased markers of resource utilization, such as ambulance use (15.5% vs. 11.6%), time to disposition (180 vs. 155 minutes), admissions rate (47.4% vs. 30.7%) and inpatient length of stay (6 days vs. 4 days). All p values were statistically significant (p < 0.001). We have demonstrated a data-driven approach to defining an ED frequent attender. Frequent attenders are associated with increased resource utilization, more complex illness and may be associated with greater 30-day mortality rates.

Primary care redesign for person-centred care: delivering an international generalist revolution.

Person-centred primary care is a priority for patients, healthcare practitioners and health policy. Despite this, data suggest person-centred care is still not consistently achieved - and indeed, that in some areas, care may be worsening. Whole-person care is the expertise of the medical generalist - an area of clinical practice that has been neglected by health policy for some time. It is internationally recognised that there is a need to rebalance specialist and generalist primary care. Drawing on 15 years of scholarship within the science of medical generalism (the expertise of whole-person medical care), this discussion paper outlines a three-tiered approach to primary care redesign; describing changes needed at the level of the consultation, practice set up and strategic planning. The changing needs of patients living with complex chronic illness has already started a revolution in our understanding of healthcare systems. This paper outlines work to support that paradigm shift from disease-focused to person-focused primary healthcare.

Incidence and predictors of 30-day postoperative readmission in children.

Hospital readmissions are being used as a quality metric for hospital reimbursement without a clear understanding of the factors that contribute to readmission. The objective of this study was to report the incidence of 30-day postsurgical readmission in children, identify the predictors for readmission, and create an algorithm to identify high-risk children. Data from the 2012-2014 Pediatric database of the American College of Surgeons National Surgical Quality Improvement Program were analyzed using univariable and multivariable logistical regression analysis. Among 182 589 children included in the 2012-2014 American College of Surgeons National Surgical Quality Improvement Program Pediatric database, 4.8% (8815/182 589) experienced a readmission within 30 days. Four significant predictors were retained in the multivariable logistic regression model: American Society of Anesthesiologists physical status ≥ 3 (OR: 1.9, 95% CI: 1.8-2.0), presence of congenital heart disease (OR: 1.66, 95% CI: 1.31-2.11), inpatient status at time of surgery (OR: 3.5, 95% CI: 3.3-3.7), and at least 1 postoperative complication (neurologic, renal, wound, cardiac, bleeding, or pulmonary) (OR: 3.14, 95% CI: 2.92-3.34). The multivariable logistic regression model showed reasonably good discrimination in predicting 30-day readmissions with receiver operating characteristic area under the curve of 0.747 (95% CI: 0.73-0.75) and good calibration (Brier score: 0.044). We created a predictive algorithm of 30-day readmission based on the 4 significant predictors. Children with congenital heart disease, high American Society of Anesthesiologist physical class, inpatient status, and at least 1 postoperative complication of any kind are at high risk for postsurgical readmissions. We provide an algorithm for quantifying this risk with the goal of reducing the number of readmissions, improving the care of patients with complex chronic illnesses, and reducing hospital costs.

Communication and the Appraisal of Uncertainty: Exploring Parents’ Communication with Credible Authorities in the Context of Chronic Childhood Illness

ABSTRACTIndividuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child’s illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents’ uncertainty during a child’s diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents’ uncertainty during parents’ first visit to a multidisciplinary clinic for the care of their child’s complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child’s first visit to a vascular anomaly clinic at a large Midwestern children’s hospital. The results suggest parents’ communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.

Addiction, Chronic Illness, and Responsibility

Some theorists have argued that we should understand the notion of free will from a functional perspective: free will just is our ability to choose effectively and adaptively in an ever-changing environment. Although far from what many philosophers normally mean by free will, those who adopt this biological-evolutionary perspective can clearly define and defend a notion of personal responsibility. One consequenceof this point of view is that addicts become responsible for their actions, for at each choice point, there is a real sense in which the addict could have elected not to use or abuse. As a result, it has been argued that addiction is not a disease, that addictive behavior is voluntary, and that sometimes it is even rational. This paper defends a different way of thinking about addiction, one that aligns it with other complex chronic illnesses. The perspective put forth here suggests that these discussions about responsibility and free will represent an over-simplified and neuropsychologically inaccurate portrait of basic human capacities for behavioral choice.

National Structural Survey of Veterans Affairs Home-Based Primary Care Programs.

To describe the current structural and practice characteristics of the Department of Veterans Affairs (VA) Home-Based Primary Care (HBPC) program. We designed a national survey and surveyed HBPC program directors on-line using REDCap. We received 236 surveys from 394 identified HBPC sites (60% response rate). HBPC site characteristics were quantified using closed-ended formats. HBPC program directors were most often registered nurses, and HBPC programs primarily served veterans with complex chronic illnesses that were at high risk of hospitalization and nursing home care. Primary care was delivered using interdisciplinary teams, with nurses, social workers, and registered dietitians as team members in more than 90% of the sites. Most often, nurse practitioners were the principal primary care providers (PCPs), typically working with nurse case managers. Nearly 60% of the sites reported dual PCPs involving VA and community-based physicians. Nearly all sites provided access to a core set of comprehensive services and programs (e.g., case management, supportive home health care). At the same time, there were variations according to site (e.g., size, location (urban, rural), use of non-VA hospitals, primary care models used). HBPC sites reflected the rationale and mission of HBPC by focusing on complex chronic illness of home-based veterans and providing comprehensive primary care using interdisciplinary teams. Our next series of studies will examine how HBPC site structural characteristics and care models are related to the processes and outcomes of care to determine whether there are best practice standards that define an optimal HBPC structure and care model or whether multiple approaches to HBPC better serve the needs of veterans.

QUALITY OF LIFE AND WELL-BEING: INTERNATIONAL PERSPECTIVES

AbstractQuality of life (QOL) for patients with chronic conditions at the end of life is a concern among policymakers and consumers, and has implications for improved care delivery outcomes. QOL indicators enable understanding of healthcare delivery beyond system oriented outcomes, shedding light on the effect of holistic, supportive care for those living with complex chronic illness in late life. In this mixed methods evaluation, we examine the effectiveness of a new patient-centered approach to late life care—LifeCourse intervention. A key component is ongoing, across-setting assistance by layperson care guides, supported by a clinical team. We investigate whether participation in LifeCourse improves QOL for patients, compared to usual care controls. QOL is assessed through quarterly administration of the Functional Assessment of Chronic Illness Therapy-Palliative Care survey (n=190 intervention patients and 157 controls). Data is presented as change in QOL indicators between baseline and 6 months. Mixed-methods analysis includes longitudinal examination of scores and qualitative data analysis. Multivariate analyses reveal that LifeCourse intervention had a significant positive effect on QOL for intervention patients when compared to controls. Additional analyses show that most changes happen for social quality of life domains. Interview data reveal that participants actively seek out ways to maintain QOL and exhibit resilience in the face of decline. Overall, our findings show that LifeCourse has a positive impact on QOL when compared to usual care patients. These trends indicate whole-person supportive care like LifeCourse is a promising approach for patients affected by complex chronic illness in late life.

P038: Does the pediatric emergency department have a role in pediatric palliative care?

Introduction: Very little is known regarding the emergency department’s (ED) role in the care of paediatric patients with complex chronic and life-limiting illnesses. In fact, the provision of paediatric palliative care (PPC) in the paediatric ED has, of yet, never been explored. This study aims to explore pediatric emergency medicine healthcare professionals’ perspectives regarding their role in PPC and to compare these to other health care professionals’ understandings of the ED’s role in PPC. Methods: Interdisciplinary semi-structured focus groups were held with healthcare providers from pediatric emergency medicine, pediatric palliative care, pediatric complex care and pediatric intensive care. Exploratory open-ended questions introduced naturally occurring discussions and interactions. Data was transcribed in full and analysed using NVivo© software. Data analysis was performed by thematic analysis and theoretical sampling. Results: From January to October 2016, 58 participants were interviewed; most were female nurses and physicians. ED providers seek to maintain continuity of care and uphold pre-established wishes throughout PPC patients’ ED visits by listening and supporting the patient and family, evaluating the clinical situation, communicating with primary care teams and organising rapid admissions to wards. Some ED providers recognized having no choice to provide palliative care approach under certain circumstances despite thinking it might not be part of their culture and role. Each interdisciplinary team demonstrated particular values and cultures, influencing their understandings of the ED’s role in PPC; continuity of care is complicated by these distinct philosophies. Limitations to providing PPC in the ED are related to unsuitable physical environments, lack of uninterrupted time, efficiency expectations, unknown patients, provider lack of knowledge and moral distress. Solutions were directed at improving communication between teams and humanizing care to develop a sensibility to quality PPC in the ED. Conclusion: Although the perspective of pediatric ED’s role in caring for PPC patients is heterogeneous, several barriers to providing high quality emergency PPC can be overcome. Future studies will explore the experiences of PPC families presenting to the ED.

Parents' perspectives on caring for children after solid organ transplant.

To explore parents' experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included "getting back to normal" at 3 weeks, "becoming routine" at 3 months, and "facing a future" at 6 months. Challenges families experienced over the course of their transition are also described. The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs.

Understanding the health care utilization of children who require medical technology: A descriptive study of children who require tracheostomies

Children who require medical technology have complex chronic illnesses. This medical technology, including ventilators, oximeters, tracheostomy tubes, and feeding tubes, allows children and their families to live at home; however, the management of the children's care by informal caregivers is complex with the need for intensive, specialized care. The purpose of this study was to examine the sociodemographic and clinical characteristics that affect health care utilization in a population of children who require medical technology. A retrospective electronic health record (EHR) review was completed on the EHR records on 171 children who require medical technology, specifically tracheostomies, at an outpatient technology dependent pulmonary clinic over a three year period (January 2010–December 2012). Descriptive statistics were used to analyze sociodemographic and clinical characteristics, including medical diagnoses, and emergency department (ED) visits and hospitalizations. Of the 171 children requiring medical technology studied, there were numerous medical diagnoses (n=791), 99% had chronic illnesses affecting two or more body systems, and 88% required two or more technologies, including a tracheostomy and a feeding tube. In addition, 91% of the children had at least one ED visit or hospitalization and were treated in the ED approximately three times over the three year period. The findings from this study noted an increased utilization of health care by these children, and identified common symptoms and medical technologies for which caregivers may need interventions, focusing on education in managing symptoms and medical technology prior to presentation to the ED or hospital.

Effect of a Whole-Person Model of Care on Patient Experience in Patients With Complex Chronic Illness in Late Life.

Background:Patients with serious chronic illness are at a greater risk of depersonalized, overmedicalized care as they move into later life. Existing intervention research on person-focused care for persons in this transitional period is limited.Objective:To test the effects of LifeCourse, a team-based, whole-person intervention emphasizing listening to and knowing patients, on patient experience at 6 months.Design:This is a quasi-experimental study with patients allocated to LifeCourse and comparison groups based on 2 geographic locations. Robust change-score regression models adjusted for baseline differences and confounding.Setting/Participants:Patients (113 intervention, 99 comparison in analyses) were individuals with heart failure or other serious chronic illness, cancer, or dementia who had visits to hospitals at a large multipractice health system in the United States Midwest.Measurements:Primary outcome was 6-month change in patient experience measured via a novel, validated 21-item patient experience tool developed specifically for this intervention. Covariates included demographics, comorbidity score, and primary diagnosis.Results:At 6 months, LifeCourse was associated with a moderate improvement in overall patient experience versus usual care. Individual domain subscales for care team, communication, and patient goals were not individually significant but trended positively in the direction of effect.Conclusion:Person-focused, team-based interventions can improve patient experience with care at a stage fraught with overmedicalization and many care needs. Improvement in patient experience in LifeCourse represents the sum effect of small improvements across different domains/aspects of care such as relationships with and work by the care team.

Analysis of Casuistry and Results of the Implementation of a Care Programme in Ten Sub-Acute Care Units in Catalonia

Introduction : Several studies show that a high percentage of people admitted to acute care hospitals could be treated in alternative care facilities of less intensity. The hospitalisation of fragile elderly people or people with chronic illnesses can give rise to various complications, as well as represent a high cost in terms of healthcare. In recent years, as an alternative to conventional hospitalisation, a number of new specific units have been set up in intermediate care hospitals in Catalonia: sub-acute care units. Their goal is to guarantee the care continuum with a geriatric rehabilitation approach from the outset, for those multi-pathological elderly patients with decompensation, who call for treatment and control of their pathologies. Sub-acute care becomes an alternative to conventional hospitalisation, with the contribution of interdisciplinary treatment plans to the complex needs of patients with chronic illnesses. They are people that call for patient-centred care, over and above managing the illness. In this setting, the rehabilitation therapies they need can be applied, with an integrated care focus and at a lower cost, in order to achieve improved health outcomes, more rapid functional improvement and with a care continuum process that is better adapted to their needs. Objective : To appraise the improvement in care for people with complex chronic illnesses, in the context of comprehensive and integrated care, through on-going care and an adaptation of resources tailored to patient needs, through the implementation of sub-acute care units in the realm of intermediate care. A sample of 591 cases admitted to eleven sub-acute care units across Catalonia were collected in a defined period of time, from February to March 2015. The care process and its outcomes, as well as their adjustment to the standards established for this resource, were analysed. Methodology : A statistical analysis of the sample endeavours to classify it into different areas that allow us to identify the socio-demographic and epidemiological profile of treated patients, as well as characteristics of the care process and its results. An emphasis has been placed on the analysis of readmissions, the level of dependence upon admission and release (Barthel) and mortality during admission and at six months of care, among other elements. Results : The analysis of the sample has identified that the average age of treated patients is 86 years of age, 63% of whom are women. Thirty-seven per cent of treated patients are complex chronic patients, and 17% are patients with advanced chronic illness. Eighty-two per cent of patients originate from emergency services, 8% from primary healthcare and 6% from nursing homes. The average length of stay is ten days. The most prevalent diagnosis, 55% of cases, involves respiratory illnesses, and 20% account for circulatory system illnesses. The number of readmissions a month after release stands at approximately 20%. The rate of mortality upon release is 18%, and 30% after six months. Conclusions : Sub-acute care units are an alternative to conventional hospitalisation that offer a specific and agile care system for geriatric patients with decompensation treated in emergency services or detected in primary care. Care becomes personalised, treating their many pathologies and their personal and context-based determining factors, which do not require cutting-edge diagnosis or therapy, but rather a stay in a facility with an interdisciplinary, person-centred approach, and where the possibility for functional recovery appropriate for the geriatric patient is offered, which allows them to return to their usual environment in the same or similar functional conditions they had previous to the acute decompensation of their chronic disease.

Navigating Primary Care

Navigating Primary Care

Care Partnerships: Toward Technology to Support Teens' Participation in Their Health Care.

Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens' limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care.

P008: Addressing chronic pain and problematic substance use of opioids in the emergency department: can a comprehensive framework for care work?

Introduction: Chronic pain and substance misuse are complex chronic illness that are subject to prejudice, misinterpretation and cultural biases. They require a broad, multi-disciplined approach if they are to be effectively managed. Barrier’s to effective care in the emergency department include our reliance on pain scales alone to effectively triage and manage chronic pain, differing philosophy’s and attitudes regarding the appropriate use of high risk pain pharmacology including opioids and confusing classifications systems used to describe pain and problematic substance use which can often lead to further stigmatization and over medicating. Methods: The charts of thirteen patients with complex pain and problematic substance use who had more than 360 visits to a regional emergency department in one year were reviewed retrospectively and data collected regarding frequency of visits and disposition after the implementation of a comprehensive pain and addiction strategy from April 2011 to August 2015. Results: In the first year of implementation there was a 70% drop in the frequency of emergency department visits. Five patients (38%) required a comprehensive pain plan. Six agreed (46%) to a direct referral to our mental health, addiction and chronic pain services. Two patients (15%) were lost to follow-up. Review of the electronic record to track patient visits to provincial emergency departments did not show an increase in visits to other facilities within the province. Review of visits in 2015 show a 97% drop in the frequency of visits. Family Physicians in the community did not report an increase in the frequency of patient visits as a direct result of the implementation of this strategy nor was there an increase in complaints to administration regarding ineffective pain management. Conclusion: Although survey numbers are low it suggests that a framework for the management of complex pain and substance use disorders can be successfully implemented in the emergency department improving timely access to appropriate management and resources for patients based on best practice to address their complex needs.

Abstracts from Center to Advance Palliative Care National Seminar Palliative Care Everywhere: Bridging the Gaps November 12-14, 2015 San Antonio, TX.

Abstracts from Center to Advance Palliative Care National Seminar Palliative Care Everywhere: Bridging the Gaps November 12-14, 2015 San Antonio, TX.

Factors Associated With Emergency Department Visits: A Multistate Analysis of Adult Fee-for-Service Medicaid Beneficiaries.

Objective:The objective of this study was to examine the association of patient- and county-level factors with the emergency department (ED) visits among adult fee-for-service (FFS) Medicaid beneficiaries residing in Maryland, Ohio, and West Virginia.Methods:A cross-sectional design using retrospective observational data was implemented. Patient-level data were obtained from 2010 Medicaid Analytic eXtract files. Information on county-level health-care resources was obtained from the Area Health Resource file and County Health Rankings file.Results:In adjusted analyses, the following patient-level factors were associated with higher number of ED visits: African Americans (incidence rate ratios [IRR] = 1.47), Hispanics (IRR = 1.63), polypharmacy (IRR = 1.89), and tobacco use (IRR = 2.23). Patients with complex chronic illness had a higher number of ED visits (IRR = 3.33). The county-level factors associated with ED visits were unemployment rate (IRR = 0.94) and number of urgent care clinics (IRR = 0.96).Conclusion:Patients with complex healthcare needs had a higher number of ED visits as compared to those without complex healthcare needs. The study results provide important baseline context for future policy analysis studies around Medicaid expansion options.