Introduction

Chronic conditions are illnesses that are characterized by a slow progression and lengthy duration, with fluctuating symptoms, disability episodes, and uncertain outcomes.1,2 The World Health Organization announced that chronic conditions accounted for more than 70% of deaths worldwide.2 The changing demographic in the US, with a greater proportion of people living with more than one chronic condition,3 has required an increased focus by clinicians on this population group.4 Clinical guidelines have been criticized for their focus on a single disease, which often creates conflicts in disease management for patients.5 A paradigm shift is occurring from disease-focused management to patient-focused management.6

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Features of multiple chronic conditions

The prevalence of multiple chronic conditions (MCCs), which is, the coexistence of two or more chronic conditions is growing dramatically.7 Currently, about 6 in 10 adults in the US have a chronic condition and 4 in 10 adults have MCCs.8 Among Medicare beneficiaries, two thirds have MCCs, with the prevalence increasing from 50% in those younger than 65 years to 81.5% in those 85 years and older.9 Adults with MCCs are the major users of healthcare services at all ages, and account for more than 66% of healthcare expenditure.10 Individuals with MCCs are heterogeneous in terms of illness severity, prognosis, functional status, personal priorities, and risk of adverse events even when diagnosed with the same conditions. Further, treatment options also differ between individuals, necessitating more person-centered approaches to care for this population.11

The Chronic Care Model

The Chronic Care Model (CCM) is a multilevel conceptual framework designed to deliver patient-centered chronic disease management.12 It includes six elements that support productive interactions between patients and providers: organizational/health system support, community resources and policies, clinical information systems, delivery system design, decision support, and self-management support.12 Self-management support is considered fundamental to chronic care, because of its impact on all aspects of the patient's life and well-being.13 According to the model, patients serve a central role in the self-management of chronic conditions. Providers are encouraged to use a collaborative approach, including goal setting, individualized action planning, and culturally tailored lifestyle education to support patients and improve outcomes. The CCM has been applied to the management of a variety of chronic conditions and interventions.14 An extended CCM has recently been developed (see The extended CCM). The new model emphasizes family support and the expected healthcare outcomes in relation to physical health, mental health, and lifestyle improvement.15

Self-management

The term self-management is often used interchangeably with terms such as self-care and self-regulation. More commonalities than differences exist among these concepts. Self-care refers to the ability to care for oneself and the performance of activities necessary to achieve, maintain, or promote optimal health.16 Self-care is often described as a preventive strategy; for example, healthy people engage in physical activity on a daily basis.17 Self-regulation is viewed as an interaction of personal, behavioral, and environmental processes from a social cognitive perspective.18 It entails self-generated thoughts, feelings, and actions that are planned and cyclically adapted for the achievement of personal goals.19 More simply, self-regulation delineates what people do to regulate aspects of themselves to reach desired future states.20 In this article we will focus on self-management, and while definitions of self-management vary slightly within the literature, for the purposes of this discussion, self-management refers to the day-to-day behaviors and activities that individuals employ for the practical management of chronic conditions, such as taking medications, and managing physical or functional effects of the illnesses.21 A classic qualitative study identified three sets of self-management tasks for people with chronic conditions: medical management, role management, and emotional management.22

Within the broader framework of the CCM, the U.S. Department of Health and Human Services included self-management as one of four goals in a strategic framework for improving the health outcomes of individuals with MCCs.23 A chronic condition self-management program for adults, the Chronic Disease Self-Management Program, has demonstrated robust evidence of efficacy and effectiveness across a wide range of chronic conditions.24 However, that program and a majority of self-management programs focus on a single chronic condition, limiting the effectiveness and efficiency of such programs in populations where adults have high rates of MCCs.25

Figure. The extended CCM

Barriers to self-management

Physical barriers.

* Decreased strength/muscle mass, tactile or auditory/visual sensationsPhysical capacity is the key ingredient in enabling patients to implement multiple tasks in daily self-management. However, decreased strength/muscle mass, tactile/auditory/visual sensations secondary to chronic conditions or the aging process are common obstacles to day-to-day self-management.26,27 Recent evidence from 2,051 older adults at baseline from the Gingko Evaluation of Memory Study revealed that 22.8% of participants had hearing or visual impairment and 5.1% had both hearing and visual impairment.28 These significant sensory impairments lead patients to comanage or delegate self-management activities to family members or close friends.29 Other evidence suggested that low levels of physical functioning were predictive of increased dependency in activities of daily living and thus presented barriers to engage in the full array of self-management practices.30

* Symptom burdenSymptoms are defined as a person's subjective appraisal of physical or mental experiences, which reflect a health status change.31 Compound effects (when symptoms and/or treatments of conditions interfere with each other) of MCCs can cause a high burden for patients. Multiple symptoms of various chronic conditions may occur simultaneously, which leads to patient confusion about symptom interpretation and management.32 Findings have shown that adults with MCCs expend significant time and energy around planning and managing their health, for example, dealing with pain, fatigue, reduced physical functioning or mobility, and curtailed activities.33,34

Psychological barriers.

* Depression/anxietyIn addition to decreased physical functioning and increased symptom burden, specific psychological factors are also barriers to self-management in adults with MCCs. There is a substantial body of evidence supporting the interactive effects among depression, anxiety, and common chronic conditions, such as cardiovascular disease (heart disease and stroke), diabetes mellitus, asthma, cancer, arthritis, and osteoporosis.33,35 Depression often exacerbates illnesses and can immobilize a person's motivation and capacity to engage in daily self-management.36,37 Conflicting information from numerous healthcare providers can cause increased anxiety38 and decreased medication adherence,39 therefore hindering self-management capacity.

Cognitive barriers.

* Cognitive impairmentCognitive impairments are common among several chronic conditions, such as heart failure,40 diabetes,41 and cancer.42 Cognitive ability involves attention/concentration, memory, and problem-solving.43 Participation in health education, daily self-monitoring, early recognition of signs and symptoms of disease progression, and adjustment of and adherence to medications are crucial tasks in self-management, and cognitive ability affects all these activities.44

* Health literacyHealth literacy refers to an individual's ability to process, analyze, and apply information to stay healthy.45 Self-management consists of a general repertoire of cognitive status, educational background, and behavioral abilities for managing external resources to maintain health.46 There is strong evidence that persons with lower levels of health literacy are unable to understand the educational materials, which leads to nonadherence of self-management practices such as following specific diets, taking medications, and daily monitoring, thus causing adverse health outcomes.47,48

* Prior self-management experiencesPatients often reflect on their past experiences and present health status, and how these impact the way they care for themselves.49 Schulman-Green and colleagues in a recent meta-synthesis review found that prior self-management experience was an important factor that influenced current health beliefs and behaviors.50 For example, patients who experienced adverse reactions of self-management or threats of further harm/injury were less likely to continue with self-management. Reasons behind these findings are not well examined; however, one of the potential reasons is that if patients had negative outcomes during previous attempts, they will likely have lower self-efficacy, which is a strong predictor of self-management skills.

Social determinants of health/culture.

* Insurance/financial supportFinancial constraints including lack of health insurance coverage and the high cost of medications negatively affect self-management in persons with MCCs.30,50,51 A qualitative study, which included both patients and practitioners' perspectives, found that for patients who relied on benefit payments, daily anxieties about money meant that their time and energy were spent on making ends meet, not seeking out opportunities to improve self-management knowledge and skills.37 Patients who were battling economic hardship due to unemployment felt much less motivated and less empowered to enhance their self-management ability.37

* Family/caregiver supportPersons with MCCs often struggle with complex regimens and depend heavily on family support.52 Higher family support has been linked with improved self-management behavior, such as encouragement of healthy lifestyle choices and assistance with transportation.53 While family involvement can be helpful, it can also be harmful.54 Specifically, family behaviors focusing on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better self-management and patient outcomes. In contrast, nagging, direct criticism, overprotection, blaming, and distracting from symptoms by bringing up other topics or activities were associated with negative patient outcomes.55-57

* NeighborhoodMCCs are not confined to older adults. In socioeconomically disadvantaged neighborhoods, MCCs occur 10 to 15 years earlier and more commonly include mental health disorders.5 Patients who live in disadvantaged socioeconomic neighborhoods are not only less likely to have support groups or resources to purchase healthier food but also have limited access to public or private facilities, such as telephones, internet, and transportation, leading to poorer self-management activities.33,37 In addition, healthcare providers recognize that patients in disadvantaged neighborhoods may display lower levels of responsibility toward self-management and thus may be more dependent on providers' support than patients from less disadvantaged neighborhoods.37 One potential reason for the lower sense of self-management responsibility could be that persons from disadvantaged neighborhoods may regard poor health and poor life expectancy as normal features of life and thus may feel less obliged to engage in self-management activities.37

* Other environmental factorsEnvironment and health are two interrelated elements in the nursing metaparadigm, which indicate the importance of environmental factors on health. Adverse physical or social environmental factors can further erode a person's capacity to engage in self-management tasks. This is especially true for patients who live in areas with polluted air and water, or neighborhoods where safety cannot be guaranteed. For example, low neighborhood safety is significantly associated with lower odds of meeting physical activity recommendations among adult Asian Americans.58 Additionally, other neighborhood environmental factors (such as the availability or lack of sidewalks, parks, and nearby grocery stores) are also a significant predictor of physical activity.59

Strategies to overcome barriers to self-management

Identifying individuals' barriers to self-management.

Due to time constraints in day-to-day consultations between NPs and patients, identifying patients' individual barriers to self-management and then providing personalized counseling and support can be difficult. Self-Management Screening (SeMaS) is a 27-item validated tool that can help overcome this challenge by identifying potential self-management barriers that need to be addressed during the conversation between advanced practice nurses and patients who have chronic conditions.60 The SeMaS has seven domains, including perceived burden, locus of control, self-efficacy, social support, coping, anxiety, and depression. One of the strengths of this tool is that the scores of individual domains can be categorized and presented in a graphic profile as barriers to self-management: no, minor, or major barriers (see SeMaS graphic profile as a representation of the scores on SeMaS). Based on the results of the SeMaS, NPs can provide personalized counseling and support during consultations.

Eliciting individuals' health outcome priorities.

Persons with MCCs often face trade-offs given that different clinical guidelines might propose complex, sometimes even competing, treatment or management for different chronic conditions.6 When patients encounter trade-offs, the best options need to take patients' priorities into consideration.61 Major efforts have been launched to make care more patient-centered, defined as "respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions."62 Fried and colleagues developed a simple computerized tool accompanied by a script explaining the concept of competing outcomes that can be used to elicit patients' health outcome priorities.61 Patients provide a rank order of priorities among four universal outcomes, including staying alive, maintaining independence, reducing or eliminating pain, and reducing or eliminating other symptoms (for example, dizziness, fatigue, shortness of breath). Patients also provide a priority score by placing the boxes on a visual analogue scale from 0 to 100, with higher scores indicating that an outcome is more important (see An example of the health outcome priorities tool). Authors concluded that assessments from the health outcome priorities tool play a potential role at both the individual and population level. At the individual level, the tool can be used to start a conversation about what is most important for persons with MCCs. At the population level, the importance of each of these individual domains to persons with MCCs argues for efforts to examine the effect of treatment/intervention on each domain, which aligns with measuring patient-centered self-reported outcomes.61

Appreciating the role of culture in self-management.

Culture refers to patterns of values, beliefs, norms, feelings, behaviors, and ways of thinking that are acquired, transmitted, or passed from one generation to the next.63,64 It is well established that culture influences the ability to cope, negotiate, and adopt strategies to manage chronic conditions.65 Leaders in health sciences increasingly recognize the importance of diversity and apply cultural humility for successful outcomes.66 The essence of cultural humility is to cultivate one's reflective and humble mind during clinical encounters by using patient-focused interviewing. This approach eliminates the need for complete mastery of every single individual's health beliefs and other concerns because the patient is encouraged to communicate how little or how much culture has to do with particular conditions.66 Only the patient is qualified to help providers understand the intersection of ethnicity, religion, education, and so on in forming the patient's identity and to clarify the relevance and impact of this intersection on the present self-management experience.66 Kleinman's explanatory model of illness provides a strategy for gathering culture-related information (See Questions to ask based on the explanatory model).67 Clinicians can adapt the questions based on patient characteristics, the type and number of chronic conditions, and healthcare setting (for example, acute care hospital, outpatient, or community). For example, persons with MCCs might refer to their "health status" rather than "sickness" or use one health diagnosis (for example, diabetes) to describe their health problem.

Implications for practice

There is a paradigm shift regarding chronic illness management, which emphasizes and acknowledges an individual's role in guiding their own care.68 Strategies offered in this article can be used to guide the practice of providing patient-centered care for individuals with MCCs by taking into account their needs, priorities, and cultural factors. Ongoing efforts to provide self-management support for adults with MCCs that is integrated into work environments and the healthcare system are indicated.50

Implications for research

Most self-management clinical trials exclude individuals with MCCs, which prevents researchers from learning how the presence of MCCs influences self-management.32 Given that there are tasks common to self-management across chronic conditions, it is possible that lessons learned from managing one chronic condition can facilitate the managing of another. Future research is needed to identify factors both common among and specific to self-management of various chronic conditions that may differ across the illness trajectory.50

Implications for education

From identifying individuals' barriers to self-management and eliciting their health outcome priorities, to appreciating the role of culture in self-management, strategies for care emphasize the importance of communicating with patients in an open inquiry manner. This approach is imperative to identify, describe, and account for unknown aspects of self-management for each unique individual.69 Therefore, future pedagogic approaches may consider using small-group discussions or role play to help students learn the process of patient-focused interviews. Students should also be encouraged to self-reflect on their implicit assumptions and preconceived notions about patients.

Implications for policy

Self-management prioritization is complicated by the fact that evidence-based guidelines usually focus on a single condition.5 As a result, guidelines can conflict when combined for multiple conditions. Individuals are at the center of prioritizing elements of their self-management as they juggle multiple conditions. Strategies offered in this article have the potential to be incorporated into clinical practice guideline development, potentially enabling changes in the policy of healthcare systems and organizations.

Conclusion

Factors hindering day-to-day self-management in adults with MCCs are multifaceted. When caring for individuals with MCCs, it is critical that NPs utilize the most updated evidence-based practice data. Based on current literature, this article synthesizes barriers to self-management for adults with MCCs and provides strategies that NPs can use to reduce or eliminate such barriers.

Questions to ask based on the explanatory model67

* Which problem bothers/worries you most?

* Why does it bother/worry you?

* What do you think started the problem?

* How much does your problem bother your everyday life?

* How much is your problem bothering you today?

* Do you think it will always bother you? If not, how long do you think it will last?

* How should we treat your problem?

* What do you think will happen with the treatment?

REFERENCES