Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity

Abstract

Objectives

Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC).

Methods

Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student’s t-tests compared the sample’s mean T-scores to US population norms. Pearson’s correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics.

Results

Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all p < .001). Whereas participants reported a significantly higher sense of meaning and purpose (p<.05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, − 0.39 to −0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race/ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being.

Conclusion

Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

Introduction

Now representing ~1% (>1 million) of all US children, children with medical complexity (CMC) are one of the fastest growing pediatric populations, account for one-third of pediatric health care expenditures, and have the highest risk for poor medical outcomes.^1,2 As most CMC rely on family members for much of their care, family caregivers of CMC are critical in ensuring their child’s health and play a central role in the operational and financial capacities of pediatric health care systems.³ Therefore, supporting and improving the well-being of family caregivers of CMC is a national priority.⁴

Despite the link between caregiver and child health, however, the well-being of CMC caregivers is under-described.^5,6 The evidence-base largely consists of qualitative reports and general or unidimensional examinations of well-being. For example, we have previously found that CMC caregivers report reduced overall mental health and mental health-related quality of life.^7,8 However, it remains unclear which aspects of emotional distress (e.g., symptoms of anxiety) caregivers are at highest risk for experiencing. Relatedly, existing research is largely deficit-oriented with minimal reporting on caregivers’ psychological strengths such as self-efficacy (i.e., confidence in one’s ability to deal with challenges) – minimizing potential benefits associated with this caregiving role.⁹ Additionally, it is widely accepted that family caregivers are at risk for sleep disruption given CMC’s around-the-clock needs, yet in-depth descriptions of CMC caregivers’ sleep-related health are lacking. A more comprehensive and rigorous understanding of CMC caregivers’ well-being is critically needed to inform the development and testing of family-level psychosocial interventions and system-level reforms.¹⁰

To address these knowledge gaps, we evaluated the well-being of caregivers of CMC receiving treatment at a pediatric complex care center (C3). This study aimed to: 1) describe the self-reported well-being among family caregivers of CMC using a battery of psychometrically rigorous measures; 2) examine relationships between measures of emotional distress and psychological strengths; and 3) explore associations between caregiver well-being and caregiver, child, and family characteristics. We hypothesized that CMC caregivers would report higher levels of emotional distress compared to the general US population.

Methods

Study Design and Setting

This is a cross-sectional study of family caregivers of CMC receiving medical care at an academic pediatric hospital’s C3 between May 2021 and March 2022. Children eligible to establish care at C3 have a high-level of medical complexity, with requirements including three or more chronic health conditions (requiring medical subspecialist care), medical technology use, and age less than 26 years old. C3 is situated within a children’s hospital and serves as western Pennsylvania’s only CMC-focused patient-centered medical home. C3 offers both primary and consultative outpatient care to ~700 patients. The Institutional Review Board at the University of Pittsburgh approved all study procedures.

Participants and Recruitment

Eligible participants were family caregivers of CMC receiving routine medical care at C3 (defined as ≥1 appointment in the prior 12 months). Family caregivers had to be ≥18 years of age and able to complete the survey in English. We excluded caregivers who lacked medical decision-making authority for their child and caregivers of children not living at home as these caregivers are not typically responsible for providing their child’s direct medical care. We also excluded caregivers of children <1 year of age to focus on caregivers with greater experience in caring for their child in the home-setting.

We identified eligible caregivers through weekly review of C3’s outpatient schedule. Prior to informing caregivers, the research team obtained permission to approach eligible caregivers from a C3 clinician and the eligible caregiver. Interested caregivers received study details in-person and provided written consent prior to participating. Participants were able to complete the survey electronically using REDCap¹¹ either at their child’s appointment (research team’s electronic tablet) or at their convenience on a personal electronic device (e.g., smartphone). Participants were compensated $25.

Outcomes and Measures

We used a battery of Patient-Reported Outcomes Measurement Information System (PROMIS) instruments (listed below) to assess several domains of caregiver well-being: global mental health, emotional distress, psychological strengths, and sleep-related health. PROMIS was developed by a National Institutes of Health initiative to provide psychometrically robust patient-reported measures of well-being using nationally-representative samples of the general US population and are available in reliable and precise short-forms (PROMIS-SF).¹² PROMIS-SF measures produce scores based on a T-score distribution with a mean of 50 points and a standard deviation (SD) of 10, which allows for comparisons to reference population norms. Higher scores equate to more of the construct being measured (e.g., more anxiety). Additionally, many PROMIS-SF instruments have established score “cut points,” allowing for classification of T-scores into standardized categories (e.g., mild, moderate, and severe) and broadly accepted thresholds of minimal important differences (MID), ranging between 2 and 6 T-score points, enabling between-group comparisons.¹³

Global Mental Health:

• The PROMIS-SF v1.2 – Global Health Mental 2a assessed participants’ overall evaluation of one’s mental health (2 items; Cronbach α = 0.81).

Emotional Distress:

• The PROMIS-SF v1.0 – Anxiety 8a assessed participants’ self-reported fear, worry or dread, hyperarousal, and somatic symptoms related to arousal (8 items; α = 0.89).

• The PROMIS-SF v1.0 – Depression 8a assessed participants’ negative mood, views of self, and social cognition, as wells as decreased positive affect and engagement (8 items; α = 0.92).

• The PROMIS-SF v1.1 – Anger 5a assessed participants’ angry mood, negative social cognition (e.g., irritability), and efforts to control anger (5 items; α = 0.93).

Psychological Strengths:

• The PROMIS-SF v1.0 – General Self-Efficacy 4a assessed participants’ confidence in one’s ability to deal effectively with a variety of stressful situations (4 items; α = 0.88).

• The PROMIS-SF v1.0 – Self-Efficacy for Managing Emotions 8a assessed participants’ confidence in managing/controlling symptoms of anxiety, depression, helplessness, frustration, and anger (8 items; α = 0.90).

• The PROMIS v1.0 – Meaning and Purpose 8a assessed participants’ sense of having good reasons for living and life having purpose (8 items; α = 0.88).

Sleep-Related Physical Health

• The PROMIS-SF v1.0 – Fatigue 13a (FACIT-Fatigue) evaluated symptoms of tiredness, exhaustion, and impact of fatigue on physical, mental, and social activities. (13 items; α = 0.91).

• The PROMIS-SF v1.0 – Sleep-Related Impairment 8a evaluated perceptions of alertness, sleepiness, tiredness, and functional impairments associated with sleep problems. (8 items; α = 0.84).

Child and Family Characteristics

We collected caregiver, child, and family characteristics previously demonstrated to be associated with caregiver well-being, including caregiver gender, age, race and ethnicity, relationship to child, marital status, and educational attainment.^7,8 Recognizing that race and ethnicity are complex social constructs, caregiver race and ethnicity were grouped into categories specified by the US Census Bureau to account for well-documented disparities in access to medical care among peoples not identifying as White.¹⁴ Child characteristics included gender, age, health insurance type, organ systems impacted by chronic health conditions,¹⁵ medical technology assistance, receipt of home care nursing, and severe neurologic impairment status. Severe neurologic impairment was defined as having a medical condition affecting the central nervous system resulting in motor and cognitive impairment and medical complexity requiring significant assistance in activities of daily living.¹⁶ As a proxy for socioeconomic status, we used the 2020 neighborhood-level Area Deprivation Index (ADI).¹⁷ The ADI uses data from the American Community Survey and US Census Survey to generate a composite measure of 17 indicators of social determinants of health (e.g., poverty, housing). Participants were assigned a national percentile rank based on their residential census block group, with higher ADI indicating more neighborhood-level disadvantage.

Analysis

We use summary statistics to describe caregiver and child characteristics, PROMIS-SF T-scores, and the proportion of caregivers meeting pre-established criteria for reduced (poor/fair) global mental health, elevated (moderate/severe) emotional distress, fatigue, and sleep-related impairment, and reduced (low/very low) psychological strengths. To compare our CMC caregiver sample’s PROMIS-SF T-scores to the general US population norm (mean T-score 50), we conducted one-sample two-sided Student’s t-tests and calculated the mean difference for each PROMIS-SF measure. We calculated Pearson’s correlation coefficients to assess relationships between constructs of emotional distress and psychological resources. To explore associations between PROMIS-SF mean scores with caregiver and child characteristics, we used one-way ANOVA for categorical variables and unadjusted ordinary least squares regression for continuous variables. These exploratory analyses were intended to identify hypothesis-generating associations and inform future research. Therefore, we did not adjust for multiple comparisons as we did not formally test singular, pre-planned hypotheses.¹⁸ Statistical significance was determined using an alpha level of <0.05. Analyses were performed using Stata 16 (StataCorp, College Station, TX).

Results

Participants

Among 190 eligible CMC family caregivers approached during the study period, 165 were enrolled (86.8%) and 143 participants completed the survey (86.7%) (Figure 1). The majority of respondents identified as female (88.8%), White (84.4%), and the biological/adoptive parent of the child (96.5%; Table 1). Caregivers’ ages ranged from 20 to 68 years (mean 39, standard deviation [SD] 9.9) with about one-half of our sample ages 35–54 years. The majority of respondents were married, had a college degree, and lived with another adult able to assist with their child’s care. Over half of the sample lived in the two most disadvantaged ADI quintiles.

Figure 1.

Enrollment Diagram

Table 1.

Family Demographic Characteristics of the Sample

Caregiver Characteristics	N = 143(%)
Female	127 (88.8)
Age – Mean (SD)	39 (9.9)
Race/Ethnicity
White or Caucasian	119 (84.4)
Black or African American	15 (10.6)
Asian, Hawaiian, or other Pacific	3 (2.1)
Islander	1 (0.7)
American Indian or Alaska Native  Hispanic/Latino	3 (2.1)
Relationship to Child
Biological/Adoptive Parent	138 (96.5)
Grandparent	3 (2.1)
Other	2 (1.4)
Marital Status
Married	84 (58.7)
Non-married, living with partner	25 (17.5)
Single	34 (23.8)
Education Level
High school degree or less	39 (27.3)
Some college or vocational/trade training	32 (22.4)
	72(50.4)
College degree or more
Area Deprivation Index Percentile
1–20	4 (2.8)
21–40	19 (13.3)
41–60	30(20.9)
61–80	46(32.2)
81–100	44 (30.8)
Other Household Adults	104 (72.7)

Percentages for race/ethnicity will not add up to 100% as caregivers could respond affirmatively in more than one category

CMC of our caregiver respondents were predominately male. Child age ranged from 1 to 25 years (mean 7, SD 6.3), with roughly half the sample ages 1–5 years (Table 2). Most were covered by public health insurance and did not receive home care nursing services. CMC in our sample most commonly experienced chronic medical conditions involving the neurologic/neuromuscular, gastrointestinal, and respiratory organ systems and almost two-thirds met criteria for severe neurologic impairment. Over three-quarters of our sample used some form of medical technology such as a gastrostomy tube (69.9%), oxygen (20.9%), and tracheostomy with mechanical ventilation (13.9%).

Table 2.

Child Demographic Characteristics of the Sample

Child Characteristics	N = 143(%)
Male	82 (57.3)
Age – Mean (SD)	7.4 (6.3)
Health Insurance
Public	82 (57.3)
Private	8 (5.6)
Public and Private	53 (37.1)
Chronic Health Conditions
Neurologic/neuromuscular	120 (83.9)
Cardiovascular	64 (44.8)
Respiratory	81 (56.6)
Renal/genitourinary	32 (22.4)
Gastrointestinal	102 (71.3)
Malignancy	1 (0.7)
Neonatal/prematurity	37 (25.9)
Transplant	2 (1.4)
Hematologic/immunologic	30 (20.9)
Metabolic	15 (10.5)
Congenital/genetic	90 (62.9)
Severe Neurological Impairment	92 (64.3)
Medical Technology Assistance	112 (78.3)
Received Home Care Nursing	54 (37.8)

Percentages for chronic conditions will not add up to 100% as children could have diagnoses in > 1 category

Well-Being of Caregivers of CMC

Our sample’s mean T-scores for each PROMIS-SF measure are presented in Table 3. CMC caregivers reported significantly lower levels of global mental health than the general US population (Mean Difference [MD] −5.8; p<.001). Caregivers also reported significantly higher scores for all dimensions of emotional distress (anxiety, depression, and anger) than the reference population (all p <.001). Within the emotional distress domain, PROMIS-SF anxiety scores demonstrated the largest absolute mean difference (+8.1). Similarly, compared to the US population norm, CMC Caregivers reported significantly higher levels of fatigue and sleep-related impairment (MD +6.9 and +5.1, respectively; both p <.001). Regarding psychological strengths, our findings were mixed. Whereas caregivers’ mean T-score for self-efficacy was similar to the general US population (MD +0.4; p=0.64), CMC caregivers reported a significantly higher sense of meaning and purpose (MD +1.9, p=0.03) and significantly lower ability to control their emotions (MD −3.6; p <.001).

Table 3.

PROMIS mean T-scores among caregivers of CMC and comparison to US population norms.

PROMIS Measure	General US Population Mean (SD)	Caregivers of CMC Mean (SD)	T-score Mean Difference (CMC vs. US)	Student’s t-test p-value⁺
Global Mental Health	50.0 (10.0)	44.2 (9.9)	−5.8	<.001
Emotional Distress
Anxiety	50.0 (10.0)	58.1 (8.7)	+8.1	<.001
Depression	50.0 (10.0)	53.3 (8.9)	+3.3	<.001
Anger	50.0 (10.0)	53.7 (9.5)	+3.7	<.001
Psychological Strengths
Meaning & Purpose	50.0 (10.0)	51.9 (10.4)	+1.9	0.03
Self-Efficacy	50.0 (10.0)	50.4 (10.1)	+0.4	0.64
Emotional Control	50.0 (10.0)	46.4 (7.1)	−3.6	<.001
Sleep-Related Health
Fatigue	50.0 (10.0)	56.9 (6.5)	+6.9	<.001
Sleep-Related Impairment	50.0 (10.0)	55.1 (7.7)	+5.1	<.001

⁺One-sample two-sided Student’s t-test

Abbreviations: PROMIS, Patient-Reported Outcomes Measurement Information System; US, United States; SD, standard deviation; MID

T-score distributions for all PROMIS-SF measures are displayed in Figure 2. All outcomes were approximately normally distributed and symmetric (skewness ranged from −0.5 to +0.46). Using pre-established cut-points of clinical severity, one-quarter (25.9%) of our sample met criteria for poor/fair global mental health. Regarding emotional distress, while almost one-half (48.3%) of the sample reported moderate-to-severe symptoms of anxiety, fewer participants reported moderate-to-severe symptoms of depression and anger (21.7% and 22.4%, respectively). Roughly one-third (32.2%) and one-quarter (24.5%) of CMC caregivers endorsed moderate-to-severe levels of fatigue and sleep-related impairment, respectively. Smaller proportions of our participants met criteria for low-to-very low psychological strengths (meaning and purpose [14.0%], self-efficacy [20.3%], and emotional regulation [11.9%]).

Figure 2. Box Plots of PROMIS-SF T-scores among Caregivers of CMC.

Within each box, median values are listed and denoted by the vertical middle line. Boxes extend from the 25^th to the 75^th percentile of each PROMIS-SF measure’s distribution among our CMC caregiver sample. Horizontal extending lines indicate the range of values for each PROMIS-SF measure.

Relationships between Emotional Distress and Psychological Strengths

Psychological strengths were moderately-to-strongly negatively (inversely) correlated with all domains of emotional distress (Supplemental Figure 1). Emotional regulation demonstrated the strongest inverse associations with levels of anxiety, depression, and anger (Pearson’s correlation coefficient [ρ] −0.52 to − 0.69; all p < .001). Similarly, sense of meaning and purpose was significantly associated with anxiety, depression, and anger (ρ, −0.48 to −0.66; all p < .001), as was self-efficacy (ρ, −0.41 to −0.57; all p < .001).

Exploratory Analyses between Caregiver, Child, and Family Characteristics and Caregiver Well-Being

Findings from our unadjusted, exploratory analyses of associations between caregiver, family, and child characteristics with caregiver well-being are presented in Supplemental Tables 1 and 2. Across all domains of caregiver well-being, we found no significant relationships between mean T-scores and caregiver gender, marital status, and educational attainment, or child age, medical technology use, neurologic impairment status, and receipt of home care nursing.

Conversely, several trends between caregiver well-being and caregiver race/ethnicity, ADI percentile, and child health insurance type emerged. Mean scores for global mental health, anxiety, anger, sleep-related health, and emotional regulation were poorer among caregivers who identified as White (all p ≤ 0.05). Caregivers experiencing the lowest levels of neighborhood disadvantage tended to report higher scores for anxiety, depression, fatigue, and sleep-related impairment (p < 0.1). Lastly, caregivers of CMC who were covered by private health insurance reported lower global mental health and higher symptoms of anxiety, fatigue, and sleep-related impairment (all p < 0.1).

Discussion

In this cross-sectional survey-based study of caregivers of CMC, we found that caregivers report significantly poorer well-being than the general US adult population. Specifically, caregivers of CMC reported reductions in global mental health, emotional regulation, and sleep-related health and elevations in symptoms of emotional distress. We also demonstrated moderate-to-strong inverse correlations between psychological strengths and emotional distress; with the strongest associations noted between emotional regulation and distress. Lastly, we observed that caregiver race/ethnicity, ADI percentile, and child health insurance type were associated with caregiver global mental health, emotional distress, and sleep-related health.

This study addresses national calls for enhancing understanding about the well-being of family caregivers of CMC by using psychometrically robust measures to examine multiple dimensions of well-being.^4,5 This encompassed aspects of emotional distress and sleep-related health, while also considering psychological strengths, thus providing a more in-depth and comprehensive portrayal of CMC caregivers’ experiences and identifying specific aspects of well-being which require further attention.⁹

Compared to the general US adult population, caregivers of CMC reported significantly more symptoms of emotional distress and reductions in sleep-related health. Most notably, CMC caregivers experienced levels of anxiety and fatigue exceeding commonly accepted thresholds of clinical relevance, consistent with prior work among similar pediatric caregiver populations.^19,20 This is unsurprising given the demanding and unrelenting nature of their responsibilities, including around-the-clock care, constant vigilance for changes in their child’s health, and navigating fragmented health systems with limited home- and community-based services.²¹ Our findings likely reflect experiences of persistent worry and chronic hyperarousal, which both worsen and are exacerbated by sleep disturbance, reported in prior qualitative studies of CMC caregivers, and aligns with the model of chronic stress that has been hypothesized to drive the increased risk of premature mortality among mothers of children with major congenital anomalies.^22,23 This provides further evidence that symptoms of anxiety and fatigue play an important role in CMC caregivers’ reduced sense of well-being and represent high-priority treatment targets for future psychosocial interventions. We believe our findings should also bolster advocacy for policy and structural changes aimed at enhancing the availability of home-health services and respite care.²⁴

Whereas our sample’s self-efficacy was similar to the general US population, participants reported significantly lower ability to control their emotions and, to a lesser degree, a higher sense of meaning and purpose than population norms. Although we provide some of the first quantitative descriptions of CMC caregivers’ psychological strengths, our findings are both consistent and at odds with existing literature. Emotional dysregulation has been repeatedly documented in other high-strain caregiver populations and been linked to frequent frustrations and sleep disruption, as well as the unpredictability of the care recipient’s health.²⁵ In contrast, multiple qualitative studies have identified sense of meaning and self-confidence about one’s caregiving ability as key milestones in a caregiver’s journey to acceptance and hope.^22,26 Therefore, that our sample’s self-reported levels of self-efficacy and sense of meaning were not substantially greater than population norms could be viewed as somewhat unexpected. On the other hand, this might instead reflect long-term adaptation and psychological growth in response to caregivers’ existential challenges. This ambiguity represents a future research opportunity in which CMC caregivers’ psychological strengths could be re-evaluated in larger and more representative samples longitudinally.

Although our study’s cross-sectional design prohibits causal interpretation, we also call attention to the inverse relationships observed between caregivers’ psychological strengths and emotional distress. These findings are broadly consistent with the positive psychological literature which shows that strengths such as emotional regulation or self-efficacy have a protective effect on emotional well-being and can reduce symptoms of anxiety and depression.²⁷ This suggests that strengths-based psychological treatments are a promising approach to better supporting the well-being of CMC caregivers. Fortunately, the broader caregiver literature offers a multitude of evidence-based psychosocial interventions suitable for adaptation. For example, across numerous caregiver populations (e.g., dementia, transplant recipients), programs which teach caregivers mindfulness and/or cognitive-behavioral techniques (e.g., cognitive reappraisal) have been shown to reduce symptoms of anxiety, depression, and insomnia by decreasing ruminative thoughts and emotional reactivity.²⁸ Alternatively, other modalities such as problem-solving therapy and meaning-centered psychotherapy have also repeatedly demonstrated the ability to reduce distress and enhance overall well-being among caregivers of patients with cancer through enhanced problem-solving skills and connection to sources of meaning.^29,30

While the associations noted in our exploratory analyses must be replicated as well, several trends which may guide future research emerged. First, White CMC caregivers reported significantly higher levels of distress than caregivers identifying as a racial minority, which aligns with research among caregivers of adults with chronic conditions (e.g., dementia) that has demonstrated racially/ethnically minoritized caregivers report lower levels of depression, greater sense of reward, and stronger family obligation beliefs.^31,32 This suggests that cultural perspectives on caregiving may influence the variability in caregiver responses to the challenges posed by CMC caregiving. Secondly, caregivers experiencing the lowest levels of neighborhood deprivation tended to report the poorest scores of well-being. While this was unexpected as a large body of literature links higher deprivation with poorer care quality and health outcomes among numerous patient populations, it is not unprecedented.³³ Prior work among caregivers of adults with chronic illnesses has found that caregivers from disadvantaged and underserved communities are more likely to report lower symptoms of depression and positive caregiving experiences.³⁴ Future research is needed to replicate and characterize the underlying mechanisms, however, it is possible that the external challenges faced by caregivers living in more deprived areas may promote greater coping ability and resources (e.g., sense of community). Lastly, caregivers whose CMC had private health insurance reported higher distress compared to those with public health insurance. This too is consistent with prior work demonstrating that private (employer-based or individually-purchased) health insurance is associated with reduced access to and satisfaction with health care (especially among CMC), and provides more evidence that CMC particularly benefit from access to public health insurance (i.e., Medicaid).³⁵

Limitations

Our survey was cross-sectional and involved a small number of participants at a single institution. Enrollment and survey completion occurred during the COVID-19 pandemic which may have negatively affected caregiver well-being. Importantly, while our sample was similar to C3’s overall CMC caregiver population (>90% female; ~80% White; <5% speak a language other than English), our findings may not extend to the broader CMC caregiver population. Compared to data from the National Survey of Children’s Health, our sample contained a higher proportion of CMC caregivers who spoke English, identified as White, were married or in long-term relationships, and had high educational attainment (i.e., college degree or more).¹ Therefore, our findings should be considered preliminary and must be replicated in larger and more representative samples.

Conclusion

Family caregivers of CMC report reduced well-being. They experience clinically relevant symptoms of anxiety and reductions in sleep-related health. Development and testing of interventions that specifically target these dimensions of well-being are needed. In the meantime, clinicians who care for CMC should integrate screening of family caregivers into routine clinical workflows and be able to connect families to appropriate community-based resources.

What’s New:

In this cross-sectional survey of family caregivers of children with medical complexity, caregivers reported clinically significantly poorer global mental health, higher emotional distress, and reduced sleep-related health. This study provides potential therapeutic targets for future psychosocial interventions.

Abbreviations:

CMC

children with medical complexity

PROMIS-SF

Patient Reported Outcomes Measurement Information System-Short Form

C3

complex care center

REDCap

Research Electronic Data Capture

PROMIS

Patient Reported Outcomes Measurement Information System

SD

standard deviation

ADI

Area Deprivation Index

CI

confidence interval