Symptom Burden: A Concept Analysis

Abstract

Lack of conceptual clarity about symptom burden causes urinary incontinence to remain undertreated. We conducted a concept analysis using Rodgers’ evolutionary method. A database and gray literature search were performed. Eight records were included. Attributes include genitourinary symptoms, psychological morbidity, and a negative sense of self. Antecedents are disruption to the pelvic floor, knowledge and perception, healthcare access and utilization, and patient and clinician-led interventions. Consequences are reduced quality of life, undesirable lifestyle modifications, stigma, and financial distress. Future research should include diverse populations and comprehensive measurement tools, and address barriers to care to improve health equity and outcomes.

The concept of symptom burden has been used in medical and nursing literature, particularly in the context of oncology and palliative care (Chen et al., 2022). The definition of symptom burden varies widely in the literature, although it broadly encompasses symptom severity and patients’ perceived impact (Cleeland, 2007). The aspects of perceived impact differ depending on the characteristics of the patient population and clinical setting. Prior analyses of the concept of symptom burden focused on oncology patients (Gapstur, 2007) and patients with chronic heart failure receiving palliative care (Stockdill et al., 2019). Although these analyses underpin clear definitions of symptom burden among these populations, results are not transferrable to community-dwelling adults (non-institutionalized adults who can perform activities of daily living) with urinary incontinence (UI), due to the unique qualities of these patients. Since the definition of symptom burden can vary depending on the clinical context, it is crucial to develop a specific definition for community-dwelling adults with UI. This tailored study will help to establish a consistent definition that can shape future research and guide clinical practice.

The International Continence Society defines UI as the involuntary leakage of urine (Haylen et al., 2010). This urinary-centric definition does not encapsulate the multifaceted nature of symptom burden associated with this condition. In addition to physiologic symptoms, psychosocial and functional factors are associated with UI (Brady et al., 2022). Community-dwelling adults with UI may appear as healthy, productive members of society. This deceiving portrayal causes adults with UI to be a vulnerable population subject to adverse outcomes, including hospitalization and mortality (Coyne et al., 2013). UI does not have a straightforward clinical presentation as there are different subtypes (stress, urgency, mixed; Haylen et al., 2010), risk factors, and associated comorbidities (Coyne et al., 2013). Therefore, a clear definition of symptom burden in community-dwelling adults with UI is needed to facilitate a standardized, holistic approach to assessment and management. Concept analysis involves the identification of a cluster of attributes that delineate a concept (Rodgers, 2000). Results provide a basis for further inquiry and concept development as an iterative process that evolves over time (Rodgers, 2000). Concept development guides the operationalization of concepts in research and clinical practice across disciplines and contexts (Rodgers, 2000). This concept analysis is essential to understand symptom burden in community-dwelling adults with UI.

The Theory of Unpleasant Symptoms (Lenz et al., 1997) can guide the identification of antecedents, attributes, and consequences of symptom burden in community-dwelling adults with UI. This theory assumes that symptoms are integrated, and a comprehensive approach to care is necessary to address the aggregate symptom burden (Lenz et al., 1997). The constructs of this framework are physiologic, psychologic, and situational (aspects of the physical and social environment) factors that influence the symptom experience (symptom burden) and performance outcomes (Lenz et al., 1997). Within this framework, performance is defined as the outcome or effect of the symptom experience, and is conceptualized to include physical role performance (Lenz et al., 1997). To facilitate a comprehensive understanding of symptom burden in community-dwelling adults with UI, antecedents can be mapped to physiologic, psychologic, and situational factors, attributes can be mapped to the symptom experience, and consequences can be mapped to performance outcomes. Symptom burden of UI encompasses more than just physiologic indicators (Brady et al., 2022). Limiting the scope of the definition of this concept to only physiologic factors can perpetuate suboptimal care and outcomes. The theory of unpleasant symptoms (Lenz et al., 1997) prompts recognition of additional factors that contribute to symptom burden to facilitate a holistic approach to care.

Among populations with some chronic or incurable conditions, the gravity of symptom burden is readily apparent. In contrast, the magnitude of the encumbrance among community-dwelling adults with UI may be less evident. Recent research has conceptualized the “hidden burdens” associated with UI, which span personal, interpersonal, institutional, community, societal, and environmental domains (Brady et al., 2022). These burdens often remain concealed due to patient embarrassment and the belief that UI is part of normal aging with no viable treatments (Brady et al., 2022). Lack of conceptual clarity about symptom burden among this population causes UI to remain underreported, underdiagnosed, and undertreated. Nurses’ propensity to care for the whole person makes them well-positioned to assess and identify physiologic, psychologic, and situational factors within patients’ inherent environments (Lenz et al., 1997), and to lead efforts to improve the management of UI. Therefore, this concept analysis aims to identify antecedents, attributes, and consequences of symptom burden in community-dwelling adults with UI to inform assessment and management strategies and guide future concept development.

Methods

This concept analysis was guided by Rodgers’ evolutionary method (Rodgers, 2000). Recent research has called for an evidence-base to describe the comprehensive burden of UI, which has expanded over time to include several domains of well-being (lived experience, relationships, social functioning, work productivity) and social ecology (healthcare costs, public restroom infrastructure, landfill waste; Brady et al., 2022). Therefore, Rodgers’ evolutionary method (Rodgers, 2000) was selected to study this concept. The steps in this method include: (a) identify the concept of interest and associated expressions (including surrogate terms); (b) identify and select an appropriate realm (setting and sample) for data collection; (c) collect data relevant to identify the attributes of the concept and the contextual basis of the concept, including interdisciplinary, sociocultural, and temporal (antecedent and consequential occurrences) variations; (d) analyze data regarding the above characteristics of the concept; (e) identify an exemplar of the concept, if appropriate; and (f) identify implications, hypotheses, and implications for further development of the concept (Rodgers, 2000). Although they are listed sequentially and appear distinct, many of these tasks are completed simultaneously through an iterative investigation and analysis (Rodgers, 2000).

Concept of Interest and Associated Expressions

Symptom burden in the context of community-dwelling adults with UI was selected as the concept of interest to explore the full impact of UI on the lives of community-dwelling adults. Search terms that described symptom burden and UI included a combination of Medical Subject Heading (MeSH) vocabulary and keywords (Table 1). An identified associated expression for symptom burden at this stage of this concept analysis was symptom experience.

Table 1.

Concepts and Related Terms.

Concepts	Related Terms for Search
Symptom burden	Symptom burden, symptom experience
Urinary incontinence	Urinary incontinence, urgency urinary incontinence, urge urinary incontinence, urge incontinence, stress urinary incontinence, stress incontinence, mixed urinary incontinence, mixed incontinence

Data Sources

Setting and Sample for Data Collection

Four databases were searched (PubMed, Cumulative Index of Nursing and Allied Health Literature [CINAHL], Embase, and PsycINFO) in June 2023 to identify potentially relevant records related to symptom burden in community-dwelling adults with UI. The search strategy was developed by the author (DS) and modified in consultation with the co-authors (SH, MT). Full search strategies applied in PubMed, CINAHL, Embase, and PsycINFO are presented in Table 2. A gray literature search was conducted in ProQuest for relevant dissertations, theses, conference papers or proceedings, and editorials. Additionally, the Urologic Nursing Journal’s online library archive was manually searched for scholarly articles to explain the concept. A search of the National Association for Continence website was also performed to understand the use of the concept in non-professional literature.

Table 2.

Database Search Strategies Used to Retrieve Articles.

Database	Search Strategy	Publications Retrieved
PubMed	(“symptom burden”[tiab] OR “symptom experience”[tiab]) AND (“Urinary lncontinence”[Mesh] OR “urinary incontinence”[tiab] OR “urgency urinary incontinence”[tiab] OR “urge urinary incontinence”[tiab] OR “urge incontinence”[tiab] OR “stress incontinence”[tiab] OR “stress urinary incontinence”[tiab] OR “mixed urinary incontinence”[tiab] OR “mixed incontinence”[tiab])	43 6/7/2023
CINAHL	(Tl [“symptom burden” OR “symptom experience”] OR AB [“symptom burden” OR “symptom experience”] AND [MH “Urinary Incontinence”] OR Tl [“urinary incontinence” OR “urgency urinary incontinence” OR “urge urinary incontinence” OR “urge incontinence” OR “stress urinary incontinence” OR “stress incontinence” OR “mixed urinary incontinence” OR “mixed incontinence”] OR AB [“urinary incontinence” OR “urgency urinary incontinence” OR “urge urinary incontinence” OR “urge incontinence” OR “stress urinary incontinence” OR “stress incontinence” OR “mixed urinary incontinence” OR “mixed incontinence”])	19 6/7/2023
Embase	(“symptom burden”:tiab OR “symptom experience”:tiab) AND (“urinary incontinence”/exp OR “urinary incontinence”:tiab OR “urgency urinary incontinence”:tiab OR “urge urinary incontinence”:tiab OR “urge incontinence”:tiab OR “stress urinary incontinence”:tiab OR “stress incontinence”:tiab OR “mixed urinary incontinence”:tiab OR “mixed incontinence”:tiab)	90 6/7/2023
PsyclNFO	(“symptom burden” OR “symptom experience”) AND (“urinary incontinence” OR “urgency urinary incontinence” OR “urge incontinence” OR “urgency urinary incontinence” OR “stress incontinence” OR “stress urinary incontinence” OR “mixed incontinence” OR “mixed urinary incontinence”)	4 6/7/2023

Note. tiab = title and abstract.

No restrictions by date were applied to the search, as a temporal understanding of the use of the concept was intended. To be eligible, records must have focused on the concept of symptom burden related to community-dwelling adults with UI and be quantitative studies, qualitative studies, review papers, dissertations, theses, conference papers or proceedings, editorials, or non-professional literature with full text available. Records were excluded that were not written in English, that were study protocols or psychometric studies, and that included adults with UI secondary to urinary tract infections, sexually transmitted infections, medication side effects, surgery, pregnancy, prostate cancer, or dual incontinence (UI and fecal incontinence). Adults with prostate cancer were excluded as the experience of these adults includes coping with a cancer diagnosis, managing complex medical symptoms and treatment side effects, and additional supportive care needs. Adults with pregnancy-related UI were excluded as these adults may experience transient UI as a physiologic change due to pregnancy and psychosocial consequences related to preparing or caring for a new baby. Adults with dual incontinence were excluded as existing evidence suggests that these adults are more likely to have additional comorbidities, medical needs, and more severe symptoms than adults with UI in isolation (Matthews et al., 2013).

To determine eligibility for inclusion, two reviewers (DS, SH) independently screened all records by title and abstract. The same two reviewers (DS, SH) independently screened full-text records and documented reasons for exclusion. A third reviewer (MT) was consulted to resolve discrepancies.

The author (DS) created the data extraction template which was revised in consultation with the co-authors (SH, MT). Two reviewers (DS, SH) independently performed data extraction and identified major themes in the included literature through an inductive process of thematic analysis. Themes were categorized as antecedents, attributes, and consequences. Discrepancies were addressed in team consensus meetings with a third reviewer (MT).

Results

Overview of the Concept of Interest

An initial step of concept analysis is identifying the concept’s conventional uses (Rodgers, 2000). This provides a foundation for understanding the concept in contextual applications. The Merriam-Webster dictionary defines “symptom” as “subjective evidence of disease or physical disturbance,” or, more broadly, “something that indicates the existence of something else” (Merriam-Webster, n.d.). “Burden” is defined as “something that is carried,” “something oppressive or worrisome,” or “the bearing of a load” (Merriam-Webster, n.d.). The definition of “burden” implies a temporal component of something being carried over time. This applies to the enduring trajectory of community-dwelling adults with UI and supports the suitability of Rodgers’ evolutionary method (Rodgers, 2000) to this concept analysis.

Associated Expressions (Surrogate and Related Terms)

Rodgers emphasized the importance of differentiating surrogate and related terms (Rodgers, 2000). Surrogate terms encompass the same attributes as the concept and provide an expression in different words (Rodgers, 2000). An identified surrogate term in the literature was symptom impact (Saiki, 2015; National Association for Continence [NAFC], n.d.a). In contrast, related concepts do not have the same attributes (Rodgers, 2000). Identified related terms in the literature were symptom distress (Tenfelde & Janusek, 2014), symptom perception (Strickland, 2014), and set of symptoms (NAFC, n.d.b). Although these terms intersect, they do not capture all attributes of symptom burden. These concepts refer to specific groups of physiologic symptoms and do not encompass other pertinent domains.

Data Collection

The PRISMA flow diagram provides a summary of the record selection process (Figure 1). PubMed, CINAHL, Embase, and PsycINFO database searches yielded 156 potentially eligible records. After deduplication, 101 records were included for title and abstract screening. Seven records were included for full text review. Three records were excluded. Four records met the inclusion criteria and were included in the analysis.

Figure 1.

PRISMA Flow Diagram of Record Selection Process.

The search in ProQuest for dissertations, theses, conference papers or proceedings, and editorials yielded 259 manually searched records. One dissertation met the inclusion criteria. Of the 607 articles in the Urologic Nursing Journal’s online library archive that were manually searched, one met the inclusion criteria. A manual search of the National Association for Continence website resulted in two additional records that met the inclusion criteria. A total of eight records were included in the analysis.

Characteristics of Sources of Evidence

Characteristics of the eight included records are presented in Table 3. This concept analysis includes records across the disciplines of obstetrics and gynecology (Cagnacci, 2016; Melville et al., 2005) and nursing (Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014; Tenfelde et al., 2021) from the United States (Melville et al., 2005; NAFC, n.d.a; n.d.b.; Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014; Tenfelde et al., 2021) and Italy (Cagnacci, 2016). Record types included cross-sectional (Cagnacci, 2016; Melville et al., 2005), quasi-experimental (Tenfelde et al., 2021), and mixed-methods (Saiki, 2015) empirical studies, literature reviews (Strickland, 2014; Tenfelde & Janusek, 2014), a patient education document (NAFC, n.d.b), and a non-professional literature article (NAFC, n.d.a). The included empirical studies reflect data from 5,134 women aged 20 to 90 years (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015; Tenfelde et al., 2021). Samples comprised greater than 50% White women, with one study including only White women (Cagnacci, 2016) and one study not specifying race and ethnicity data (Melville et al., 2005). Records focused on a variety of aspects of symptom burden, including physical (Cagnacci, 2016; NAFC, n.d.a), mental (Melville et al., 2005; NAFC, n.d.a), and interpersonal (Saiki, 2015) impacts, interaction with the health care system (NAFC, n.d.b; Strickland, 2014), and management interventions (Tenfelde & Janusek, 2014; Tenfelde et al., 2021). Symptom burden was quantified with a variety of self-report measures that generate valid and reliable scores (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015; Tenfelde et al., 2021), which underscores the subjective nature of the concept.

Table 3.

Characteristics of Sources of Evidence.

Authors, Year	Discipline of First Author	Country	Purpose	Design	Sample	Measures of Symptom Burden	Main Findings Related to Symptom Burden
Cagnacci et al., 2016	Obstetrics and Gynecology	Italy	To examine the association of climacteric symptoms (vasomotor, anxiety, depression, somatic, sexual) and urinary incontinence in postmenopausal women.	Cross-sectional	1502 postmenopausal White women, mean age 55.8 ± 5.8 years at the menopause outpatient service at a university hospital from January 2010 to December 2015.	Greene Climacteric Scale, State Trait Anxiety Inventory, Zung’s Scale for Depression.	Postmenopausal women with urinary incontinence had a higher symptom burden in terms of vasomotor, anxiety, depression, somatic, and sexual symptoms than those without urinary incontinence.
Melville et al., 2005	Obstetrics and Gynecology	United States	To evaluate the prevalence and associated factors of major depression among women with urinary incontinence.	Cross-sectional	3563 women aged 30–90 years at a health maintenance organization in 2002; race and ethnicity data not specified.	Patient Incontinence Severity Assessment, Incontinence-Quality of Life scale with three subscales (avoidance and limiting behaviors, psychosocial impacts, social embarrassment), Patient Health Questionnaire nine-item for depression.	Women with comorbid urinary incontinence and major depression had higher incontinence symptom burden, functional impairment, and reduced quality of life than those with urinary incontinence alone.
Saiki, 2015	Nursing	United States	To explore the impact of female urinary incontinence on the intimate partner dyad in terms of symptom severity, relationship satisfaction, biographical, and relationship factors.	Dissertation; mixed methods	57 women aged 45–65 years with urinary incontinence and 43 male intimate partners; 21.1% Hispanic/Latina, 71.9% White, 7% Other.	Incontinence Severity Index, three Incontinence Questions, Couples Satisfaction Index, Rosenberg Self-Esteem Scale, Body Image Scale, Hospital Anxiety and Depression Scale, Sexual Quality of Life Scale.	As symptom burden increases, relationship satisfaction decreases and intimate partners may not successfully cope together.
Strickland, 2014	Nursing	United States	To summarize and analyze the literature focusing on reasons for not seeking care from clinicians among older women with urinary incontinence.	Literature review	Community-dwelling women aged 50 years and older with urinary incontinence; 18 articles (quantitative studies n = 12, qualitative studies n = 6).	N/A	Symptom perception affects care-seeking behavior and many women choose not to seek formal care, which perpetuates symptom burden.
National Association for Continence (n.d.b)	Not specified	United States	To advise patients how to talk to clinicians about urinary incontinence.	Patient education document	N/A	N/A	More than one set of symptoms can be discovered through patient generated data that require multifaceted treatment plans.
Tenfelde et al., 2021	Nursing	United States	To investigate the feasibility and effect on symptom burden, quality of life, and inflammatory biomarkers of a gentle yoga program for women with urge urinary incontinence.	Prospective quasi-experimental pretest/posttest	12 community-dwelling, English speaking women aged 20–70 years (mean age 55 ± 9.08 years) with urge urinary incontinence in 2015; 50% White, 41.7% African American, 8.3% Unknown.	Pelvic floor distress inventory–20, Overactive Bladder Symptom and Quality of Life Short Form, Center for Epidemiologic Studies Depression Scale.	Symptom burden significantly improved in women who completed an 8-week gentle yoga program.
Tenfelde & Janusek, 2014	Nursing	United States	To summarize the potential benefits of yoga to improve the quality of life of women with urge urinary incontinence.	Review article	N/A	N/A	Symptom distress among women with urge urinary incontinence can be reduced by yoga, which targets stress-associated inflammatory pathways and offers psychological and biological benefits.
National Association for Continence, n.d.a	Not specified	United States	To discuss the impact of urinary incontinence on physical, mental, and financial well-being.	Non-professional literature article	N/A	N/A	Symptom impact of urinary incontinence negatively affects physical (decreased physical activity, increased risk for falls), mental (shame, decreased quality of life, depression, caregiver burden, and financial ($19.5 billion spent in the United States in the year 2000 on incontinence care) domains.

Antecedents

Antecedents are conditions that must exist prior to the emergence of the concept (Rodgers, 2000). Physiologically, disruption to the pelvic floor is an antecedent of UI. This can be due to risk factors, including bladder prolapse or hormonal changes (Cagnacci, 2016), which can lead to pelvic floor dysfunction in the form of muscle weakness. Once this develops, knowledge and perception of UI is an antecedent to the experience of symptom burden. Many adults believe UI is a component of normal aging (NAFC, n.d.a; Strickland, 2014;) and find ways to cope with their symptoms as the burden escalates over time. Additionally, knowledge about symptoms (NAFC, n.d.b) and available treatments (Strickland, 2014) directly affect health care utilization. Adults with limited knowledge or skewed perceptions about UI may delay or neglect seeking care; therefore, the extent of health care access and utilization is another antecedent to symptom burden. Routine screening does not always occur among adults who seek care (Saiki, 2015). Moreover, a lack of rapport between patients and clinicians may inhibit conversations about UI and perpetuate symptom burden.

UI requires effective patient and clinician management to prevent exacerbations and mitigate symptom burden. A combination of patient and clinician-led interventions are antecedents that can contribute to the overall symptom burden experienced. Patient-led interventions can include yoga and pelvic floor muscle exercises (Strickland, 2014; Tenfelde & Janusek, 2014; Tenfelde et al., 2021). Additionally, clinicians can refer patients for physical therapy, behavioral training led by a psychologist (Tenfelde et al., 2021), and prescribe medications for symptom control (NAFC, n.d.a).

Attributes

Attributes are characteristics that formulate the definition of the concept (Rodgers, 2000). A range of attributes were identified that embody physiologic, psychologic, personal, and interpersonal domains. The identified attributes of symptom burden among community-dwelling adults with UI are genitourinary symptoms, psychological morbidity, and negative sense of self. These attributes can overlap and perpetuate each other over time.

Genitourinary symptoms.

Included records suggest that symptom burden can be defined by genitourinary symptoms, encompassing symptoms originating from the urinary or reproductive tracts. Records focused on various UI subtypes, including urgency UI (Cagnacci, 2016; Melville et al., 2005; NAFC, n.d.a; Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014; Tenfelde et al., 2021), stress UI (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015; Strickland, 2014), and mixed UI (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015). These subtypes include a variety of symptoms, such as urinary frequency, urgency, and nocturia (NAFC, n.d.b; Saiki, 2015; Tenfelde & Janusek, 2014). Results of included empirical studies suggest that adults with UI experience these symptoms differently in terms of duration, severity, and exacerbations (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015; Tenfelde et al., 2021). Further, findings of one study suggest that UI can relate to sexual dysfunction in terms of reduced intimacy, affection, and physical proximity (Tenfelde & Janusek, 2014). Female specific hormonal influences, such as the reduction in estrogen caused by menopause, can exacerbate UI, which adds to the cumulative symptom burden, including hot flashes, night sweats, and mood disorders (Cagnacci, 2016).

Psychological morbidity.

Genitourinary symptoms can directly affect mental health, resulting in anxiety (Cagnacci, 2016; NAFC, n.d.a; Saiki, 2015; Tenfelde & Janusek, 2014; Tenfelde et al., 2021) and depression (Cagnacci, 2016; Melville et al., 2005; NAFC, n.d.a; Saiki, 2015; Tenfelde et al., 2021). One study found that UI and depression have an interconnected symptom burden, with UI severity resulting in worsening depression (Melville et al., 2005). Additionally, anxiety can produce tension and incomplete relaxation of the pelvic floor musculature, which can cause or exacerbate UI. One included literature review identified the chronic fear of leakage as a specific type of anxiety affecting community-dwelling adults with UI (Tenfelde & Janusek, 2014). This perpetual fear can heighten anxiety and worsen UI (Tenfelde & Janusek, 2014). The interrelation of anxiety and fear is also highlighted in the included non-professional literature article, which acknowledges these factors as significant risks for declining mental health (NAFC, n.d.a).

Negative sense of self.

Due to UI, deficiencies in the personal and professional spheres can erode an individual’s self-identity (Melville et al., 2005; NAFC, n.d.a; Saiki, 2015; Tenfelde & Janusek, 2014). One study revealed that adults with UI can develop low self-esteem and negative body image that can interfere with intimate partner relationships (Saiki, 2015). Further, coping strategies among intimate partners may not be effective as the symptom burden increases (Saiki, 2015). Adults with UI may begin to withdraw from relationships (Saiki, 2015), work (NAFC, n.d.a; Tenfelde & Janusek, 2014), travel (Tenfelde & Janusek, 2014), and daily activities, (Melville et al., 2005), which compounds a negative sense of self. This isolation can worsen physiologic symptoms and mental health, and increase the risk of negative patient outcomes.

Consequences

Consequences are outcomes that transpire because of the concept (Rodgers, 2000). The negative undertone of “burden” facilitates adverse consequences fueled by this concept. Although the most cited consequence was reduced quality of life (Melville et al., 2005; NAFC, n.d.a; Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014; Tenfelde et al., 2021), the magnitude of this outcome may not be fully understood. The severity of reduced quality of life may be underappreciated by those who have not lived similar experiences. In addition to negative health outcomes, including urinary tract infections, falls, fractures, skin breakdown, and hospitalization, UI is associated with depression, anxiety, social isolation, and decreased work productivity (Brady et al., 2022; Coyne et al., 2013). These tangible sequelae constitute attributes of symptom burden, and affect the overall perception of quality of life.

Another prevalent consequence is undesirable lifestyle changes, including wearing pads, restricting fluids, mapping out public bathroom locations (NAFC, n.d.a; Strickland, 2014), physical inactivity (NAFC, n.d.a; Tenfelde & Janusek, 2014), and limiting daily activities due to UI (Melville et al., 2005). Although these lifestyle changes can be perceived as coping mechanisms, these are avoidance mechanisms and are not adapted by choice. Over time, these adjustments can lead to negative outcomes, including incontinence dermatitis due to prolonged pad use, dehydration secondary to fluid restriction, and obesity because of a sedentary lifestyle. These lifestyle modifications contribute to quality of life and add to the already immense burden.

The perception of UI as a normal part of aging is often juxtaposed with feeling stigmatized, making stigma a consequence of symptom burden (NAFC, n.d.a; Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014). Research demonstrates that community-dwelling adults with UI can experience stigma due to leakage, odor, or UI product use (Tenfelde & Janusek, 2014). Moreover, non-professional literature cites stigma as a significant consequence of symptom burden (NAFC, n.d.a). The perceived degree of judgment experienced by adults with UI can determine the amount of transparency in personal relationships and encounters with clinicians. Further, stigma may lead to reduced care-seeking behavior and poor health outcomes.

Access and utilization of health care services may be limited due to stigma (NAFC, n.d.a; Saiki, 2015; Strickland, 2014; Tenfelde & Janusek, 2014) and financial distress (NAFC, n.d.a; Tenfelde & Janusek, 2014), which is another important consequence. Community-dwelling adults with UI face financial distress at a societal level due to missed work and lost opportunities for career advancement (Tenfelde & Janusek, 2014). Reluctance to go out in public and inability to focus on work-related tasks reduce productivity. Additionally, if care is sought, UI can result in increased health care-associated costs (NAFC, n.d.a) due to repeated visits for unresolved symptoms, tests that may be unnecessary, and treatments that are not well covered by insurance.

Data Analysis

The results of this concept analysis underscore a definition of symptom burden that has developed over time with advancements in knowledge and science. This aligns with Rodgers’ evolutionary method (Rodgers, 2000) and provides a working definition for current research and practice and a foundation for future inquiry. Prior definitions of symptom burden in different contexts have included physiologic impact (Gapstur, 2007). This concept analysis has expanded upon this definition to include key attributes from other domains. Based on this concept analysis, symptom burden in community-dwelling adults with UI is defined as a multidimensional, subjective concept involving the aggregate weight of physiologic, psychologic, personal, and interpersonal factors that impact normal functioning. Antecedents, attributes, and consequences identified in this concept analysis mapped to the model dimensions of the theory of unpleasant symptoms (Lenz et al., 1997) are displayed in Figure 2. Future research will likely build on this definition as studies reveal additional attributes that inform the holistic approach needed to care for community-dwelling adults with UI.

Figure 2.

Theory of Unpleasant Symptoms (Revised; Lenz et al., 1997) With Antecedents, Attributes, and Consequences of Symptom Burden in Community-Dwelling Adults With Urinary Incontinence Mapped to Theoretical Model Dimensions.

Exemplar Case

Other methods of concept analysis require the construction of an exemplar case that encompasses all antecedents, attributes, and consequences of the concept of interest. Rodgers advises against creating an exemplar case to avoid the introduction of bias (Rodgers, 2000). An exemplar case was not found in the literature. Studies involved community-dwelling adults that embodied some, but not all, characteristics of symptom burden. As research advances and utilizes patient-generated data creating a comprehensive approach to the assessment and management of UI and qualitative methods to analyze this phenomenon, an exemplar case may emerge. However, creating an exemplar case based on predetermined features can result in bias and an inadequate portrayal of the intricacies of symptom burden.

Discussion

The concept of symptom burden has appeared to be fragmented in the nursing literature, as research has focused on siloed components of this phenomenon. Further, the influence of contextual aspects of patients’ lives on symptom burden is not always fully considered. Symptom assessment and management is a principle of nursing practice intended to reduce severity, achieve stability, and limit the multidimensional impact on life. The comprehensive definition of symptom burden in community-dwelling adults with UI resulting from this concept analysis underscores the holistic approach that is fundamental to nursing and can be applied to foster improvements in clinical practice. This concept analysis has several implications for clinical practice and further development of the concept generated through Rodgers’ evolutionary method (Rodgers, 2000).

Half of the included records were from the discipline of nursing. Nurses are well-positioned to provide comprehensive care to community-dwelling adults with UI who have complex symptom burdens. The prevalence of UI in this population supports the need for routine assessment of this condition in clinical practice. These assessments must be de-stigmatizing, in which clinicians use positive language to describe UI. To facilitate the de-stigmatization of UI in clinical practice, research should focus on identifying stigmatizing language related to UI and the association with negative outcomes. Findings can inform additional training for clinicians to facilitate non-judgmental, equitable UI care. Although UI should not be normalized and accepted as part of the normal aging process, using language that replaces the stigmatizing discourse of shame and embarrassment is essential. This training can provide clinicians with confidence and motivation to discuss UI with patients. Increasing clinician-initiated assessments may begin to reduce stigma associated with UI and cause patients to report related symptoms more readily, which can lead to improvements in care.

Further, standardized assessments can be enabled by developing and implementing clinical decision support tools. These tools can be used to identify patients at risk for UI and ensure clinicians implement assessments spanning multiple domains of symptom burden. Additionally, including patient-generated data with these tools can provide valuable insight into the symptom burden experienced by each unique patient. For example, mobile health technologies that elicit patient information related to the antecedents, attributes, and consequences of symptom burden identified in this concept analysis can inform tailored treatment plans. Further, patients may feel more comfortable recording information for a clinician to review prior to a healthcare visit than initiating a discussion about UI. Mobile health technologies should include de-stigmatizing language to reduce potential shame and underreporting. These technologies should be designed and tested in future research to ensure usability and equity in self-symptom reporting. Guided by the results of this concept analysis, it is important to consider all antecedents, attributes, and consequences of symptom burden to identify community-dwelling adults with UI and formulate effective treatment plans. In addition to physiologic symptoms associated with UI, clinicians should evaluate patients’ perceptions of UI, psychosocial impacts, and potential barriers to care. Tailored interventions can be developed, implemented, and tested to determine the effect on patient outcomes and the feasibility of adopting holistic care strategies in clinical practice.

The multidimensional nature of symptom burden in community-dwelling adults with UI requires an interdisciplinary team-based approach to care. Many adults with UI initially present to primary care clinicians. These clinicians must be aware of the influence of pelvic floor disorders, mental health disorders, and other sociocultural factors contributing to UI. Information about pelvic floor disorders is often lacking in clinician training, leaving gaps in knowledge for future research to address. Primary care clinicians must be able to facilitate referrals to clinicians of other disciplines, such as urologists, urogynecologists, physical therapists, and social workers, and also be able to address multidimensional contributing factors to UI in their own practice. Records included in this concept analysis only span two disciplines (i.e., nursing and obstetrics and gynecology). Symptom burden among community-dwelling adults with UI warrants more attention in research from other disciplines. Interdisciplinary research teams can leverage complementary areas of expertise to fully address symptom burden in community-dwelling adults with UI. In clinical practice, a shift from disjointed specialty-specific care to integrating care among diverse disciplines is needed to improve the management of patients with UI. This can be achieved by integrating electronic health record systems to enable note sharing between clinicians to provide coordinated care to patients who receive care in multiple clinical settings. Care provided in settings that adopt the tenets of patient-centered medical home models used in primary care is needed, including providing services in one location for all patient needs, coordination of care across specialties, and access to an interdisciplinary care team to improve care delivery and outcomes (Stange et al., 2010).

Recognizing the extent of healthcare access and utilization as an antecedent to symptom burden among community-dwelling adults with UI underscores the need for policymakers to address potential barriers to care. For example, although physical therapy is an available treatment modality for UI, access to physical therapy services is often limited due to lack of insurance coverage and incurred cost (Washington et al., 2011). Amendments in billing, reimbursable rates, and insurance plans can expand coverage of these services and increase participation in this treatment that may reduce symptom burden. Specifically, shifting reimbursement structures to focus on patient outcomes can promote more efficient, holistic, and cost-effective care. Additionally, direct access to physical therapy services without a clinician referral, and removing or increasing the number of visit limits, can reduce barriers to care. Another possible barrier to care is negative patient perception of available treatments due to knowledge deficits (Washington et al., 2011). In terms of physical therapy, patient education about the rationale, efficacy, and expectations of treatment may improve patient participation and subsequent consequences of symptom burden (Washington et al., 2011). Enhancing clinicians’ knowledge through interdisciplinary collaborations about the techniques used in physical therapy treatments may increase confidence in explaining this to patients. This can foster therapeutic patient–clinician relationships, increase patient participation in patient and clinician-led interventions, and ultimately enhance the necessary interdisciplinary approach to care.

Given continuous advancements in knowledge and science, this concept is expected to evolve and develop over time. Rodgers’ evolutionary method asserts that concept analysis should promote further research and concept development (Rodgers, 2000). Informed by the theory of unpleasant symptoms (Lenz et al., 1997), this concept analysis identified physiologic, psychologic, and situational antecedents to define attributes and resulting consequences of symptom burden of community-dwelling adults with UI. This theory (Lenz et al., 1997) can be used to guide future symptom-based research for patients with UI by prompting consideration of other relevant antecedents and linking symptom burden to other important outcomes. For example, social determinants of health, including aspects of the physical and social environment, availability of caregiver assistance, living arrangements, and other sociodemographic characteristics, can be integrated into analyses of community-dwelling adults with UI to better understand this concept. Analyses can examine how social determinants of health affect symptom burden and subsequent outcomes, including workforce productivity, economic impacts, and environmental sequelae. The theory of unpleasant symptoms (Lenz et al., 1997) fosters consideration of interrelated attributes comprising symptoms burden, and promotes the development of more comprehensive interventions than those directed toward addressing siloed components of this concept.

Empirical studies included in this concept analysis involved samples of mostly White women. Additionally, all but one included record originated from the United States. Future research examining symptom burden among community-dwelling adults with UI should include participants of other genders, races, and ethnicities to promote understanding of this concept across diverse populations. Social determinants of health can be integrated into these analyses to examine differences in antecedents, attributes, and consequences by sociodemographic characteristics. Research focusing on this concept should be done in countries outside the United States to further investigate sociocultural differences. Given differences in environmental, genetic, societal, and health care system level factors across countries, additional antecedents, attributes, and consequences are expected to emerge. Understanding this concept across diverse populations is essential to promote equitable care of community-dwelling adults with UI.

Since symptom burden is largely subjective, using tools that appropriately measure this concept in future research is essential. Empirical studies included in this concept analysis used tools that generate valid and reliable scores to separately measure physiologic, psychologic, and interpersonal attributes (Cagnacci, 2016; Melville et al., 2005; Saiki, 2015; Tenfelde et al., 2021). This concept analysis identified attributes that can be used to inform the development of measurement tools that capture all relevant domains. Future research should quantify the aggregate symptom burden, capture the multidimensional nature of this concept, and examine associations with patient outcomes.

Limitations

This concept analysis has some limitations. Some relevant records may have been missed as only three sources of gray literature were searched and results were limited to records published in English. Among the empirical studies included in this analysis, participants were mostly White women in the United States. Therefore, the experience of men and adults of diverse racial and ethnic backgrounds may not have been fully captured in this analysis. This concept analysis excluded adults with prostate cancer and pregnancy-related UI. However, these populations are often studied separately, given differences in risk factors, symptoms, and experience with the health care system. The results of this concept analysis may have been different if these populations were included. Future research should examine symptom burden in these populations to determine contextual definition variations.

Conclusion

The multidimensional definition of symptom burden in community-dwelling adults with UI resulting from this concept analysis provides a foundation for future research and clinical practice. Limiting the perception of symptom burden to only physiologic symptoms inhibits effective management of this condition. The comprehensive characteristics encompassed by this definition align with the tenets of nursing practice and underscore the holistic approach needed to care for this population. This definition will likely evolve over time as future inquiry discovers new knowledge that can be applied to improve the care of community-dwelling adults with UI.