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OBJECTIVE: Pediatric asthma management is challenging for parents and guardians (hereafter caregivers). We examined (1) how caregivers mentally represent trigger and symptom management strategies, and (2) how those mental representations are associated with actual management behavior. METHODS: In an online survey, N = 431 caregivers of children with asthma rated 20 trigger management behaviors and 20 symptom management behaviors across 15 characteristics, and indicated how often they engaged in each behavior. RESULTS: Principal components analysis indicated 4 dimensions for trigger management behaviors and 3 for symptom management behaviors. Bayesian mixed-effects models indicated that engagement in trigger management behavior was more likely for behaviors rated as affirming caregiver activities. However, trigger management behavior did not depend on how highly the behavior was rated as challenging for caregiver, burdensome on child, or routine caregiving. Engagement in symptom management behavior was more likely for behaviors rated as affirming and common and harmless to the child, but was unrelated to how highly a behavior was rated as challenging for caregivers. CONCLUSION: These results suggest that interventions might be particularly useful if they focus on the affirming nature of asthma management behaviors. However, such interventions should acknowledge structural factors (e.g. poverty) that constrain caregivers' ability to act.
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Childhood cancer survivors have a higher risk of developing cardiomyopathy than members of the general population. Screening echocardiograms can facilitate early detection and treatment of cardiomyopathy. Furthermore, motivational interviewing can increase uptake of cardiac screening. However, such approaches are time- and resource-intensive, which limits their reach to the survivors who need them. We describe how we utilized a user-centered design process to translate an in-person motivational interviewing intervention into an eHealth tool to improve cardiac screening among childhood cancer survivors. We used an iterative, three-phase, user-centered design approach: (i) setting the stage (convening advisory boards and reviewing the original intervention), (ii) content programming and development (writing and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.) For cognitive interviews, participants were recruited via institutional participant registries and medical records. Data were analyzed using rapid qualitative analysis. During Phase 1, we identified survivor and provider advisors and outlined elements of the in-person intervention to change for the eHealth tool. During Phases 2 and 3, advisors recommended several modifications that guided the final intervention content and flow. Examples include: acknowledging potential hesitation or apprehension surrounding medical screenings, addressing barriers and facilitators to obtaining screening, and improving the tool's usability and appeal. In Phase 3, cognitive interview participants suggested additional refinements to the intervention language. This translation process shows that continued in-depth engagement of community advisors and iterative testing can improve the applicability of an eHealth to survivors' lived experiences and social contexts.
Childhood cancer survivors have a higher-than-average risk for developing heart damage compared to the general population. One-on-one interviews aimed at educating survivors about the importance of screening for heart damage can increase engagement in screening, but these programs are often too resource-intensive to be made available to large groups of survivors. Programs delivered using digital technology, like websites and smartphone apps, can be a more accessible alternative. In this article, we describe how we translated an in-person counseling program into a digital tool. We convened advisors who were childhood cancer survivors and healthcare providers to review the tool throughout the three-phase translation process: (i) setting the stage (convening advisory boards and reviewing original intervention), (ii) content programming and development (writing, and programming intervention text and flow), and (iii) intervention testing (research team testing and cognitive interviews.). Our translation process shows that continuously engaging with advisory boards and testing apps with participants can improve health programs in line with communities' diverse perspectives.
Subject(s)
Cancer Survivors , Motivational Interviewing , Telemedicine , User-Centered Design , Humans , Motivational Interviewing/methods , Cancer Survivors/psychology , Female , Male , Child , Cardiomyopathies/therapy , Cardiomyopathies/psychology , Adolescent , Neoplasms/psychology , Neoplasms/therapy , AdultABSTRACT
Colorectal cancer (CRC) is the fourth most common cancer among U.S. men and women and the second deadliest. Effective screening modalities can either prevent CRC or find it earlier, but fewer than two thirds of U.S. adults are adherent to CRC screening guidelines. We tested whether people who defensively avoid CRC information have lower adherence to CRC screening recommendations and weaker intentions for being screened and whether CRC information avoidance adds predictive ability beyond known determinants of screening. Participants, aged 45-75 years, completed a survey about known structural determinants of CRC screening (healthcare coverage, healthcare use, provider recommendation), CRC information avoidance tendencies, and screening behavior (n = 887) and intentions (n = 425). Models were tested with multivariable regression and structural equation modeling (SEM). To the extent that participants avoided CRC information, they had lower odds of being adherent to CRC screening guidelines (OR = 0.55) and if non-adherent, less likely to intend to be screened (b=-0.50). In the SEM model, avoidance was negatively associated with each known structural determinant of screening and with lower screening adherence (ps < 0.01). Fit was significantly worse for nested SEM models when avoidance was not included, (i.e., the paths to avoidance were fixed to zero). Information avoidance was associated with screening behavior and other known structural determinants of screening adherence, potentially compounding its influence. Novel strategies are needed to reach avoiders, including health communication messaging that disrupts avoidance and interventions external to the healthcare system, with which avoiders are less engaged.
Subject(s)
Colorectal Neoplasms , Health Communication , Adult , Male , Humans , Female , Information Avoidance , Early Detection of Cancer , Colorectal Neoplasms/diagnosis , Surveys and Questionnaires , Mass ScreeningABSTRACT
OBJECTIVE: With screening, colorectal cancer can be detected when treatable, or even prevented. However, approximately one in five people tend to avoid colorectal cancer information, and avoidance is associated with being less likely to have been screened for the disease. Crucial to developing strategies to reduce information avoidance, we sought a comprehensive understanding of reasons people avoid colorectal cancer information. METHODS AND MEASURES: In a mixed methods study, we surveyed 200 participants who varied with respect to avoidance and interviewed 15 people who tended to avoid colorectal cancer information (all aged 40-75) about reasons for avoiding. RESULTS: In both survey and interviews, primary reasons for information avoidance were: (1) shielding from anxiety and other aversive emotion, (2) perceived information sufficiency and (3) feelings of information overload. Trait anxiety, fear of diagnosis, anticipating negative interactions with healthcare, and negative associations with screening procedures exacerbated avoidance. Participants justified information non-relevance by attributing risk to other people's characteristics such as family history, gastrointestinal symptoms, being male, or living an unhealthy lifestyle. CONCLUSION: Novel findings include the triggering influence of trait anxiety and financial constraints on information avoidance. Also, information overload and incorrect understanding of risk factors may exacerbate perceptions of information sufficiency and avoidance.
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Background: A Health Equity Task Force (HETF) of members from seven Centers funded by the National Cancer Institute's (NCI) Implementation Science in Cancer Control Centers (ISC3) network sought to identify case examples of how Centers were applying a focus on health equity in implementation science to inform future research and capacity-building efforts. Methods: HETF members at each ISC3 collected information on how health equity was conceptualized, operationalized, and addressed in initial research and capacity-building efforts across the seven ISC3 Centers funded in 2019-2020. Each Center completed a questionnaire assessing five health equity domains central to implementation science (e.g., community engagement; implementation science theories, models, and frameworks (TMFs); and engaging underrepresented scholars). Data generated illustrative examples from these five domains. Results: Centers reported a range of approaches focusing on health equity in implementation research and capacity-building efforts, including (1) engaging diverse community partners/settings in making decisions about research priorities and projects; (2) applying health equity within a single TMF applied across projects or various TMFs used in specific projects; (3) evaluating health equity in operationalizing and measuring health and implementation outcomes; (4) building capacity for health equity-focused implementation science among trainees, early career scholars, and partnering organizations; and (5) leveraging varying levels of institutional resources and efforts to engage, include, and support underrepresented scholars. Conclusions: Examples of approaches to integrating health equity across the ISC3 network can inform other investigators and centers' efforts to build capacity and infrastructure to support growth and expansion of health equity-focused implementation science.
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BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.
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OBJECTIVE: Parents and guardians (hereafter caregivers) make decisions for their children's medical care. However, many caregivers of children with asthma struggle to understand their child's illness. We used the psychometric paradigm to investigate how caregivers conceptualize, or mentally represent, asthma triggers and symptoms and how these representations are linked to perceived asthma exacerbation risk. METHODS: We asked 377 caregivers of children with asthma across the U.S. to rate 20 triggers or 20 symptoms along 15 characteristics. Caregivers also indicated their perceived risk of their child having an asthma exacerbation (hereafter interpersonal risk perceptions). Using principal components analysis, we extracted key dimensions underlying caregivers' ratings on the characteristics. Then we related the triggers' and symptoms' scores on the dimensions to caregivers' interpersonal risk perceptions. RESULTS: Interpersonal risk perceptions were higher for triggers with high ratings for the dimensions severe and relevant, and negative affect-yet manageable, but not chronic-yet unpredictable. Risk perceptions were also higher for symptoms with high ratings for the dimensions severe and unpredictable, and relevant and common, but not self-blame or manageable despite unknown cause. CONCLUSION: By identifying key dimensions underlying caregivers' mental representations of asthma triggers and symptoms, these findings can inform a new approach to asthma education.
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Background. Sociodemographically diverse study samples are critical for research related to health decision making. However, not all researchers have the training, capacity, and funding to engage research methods that recruit the most diverse populations. Objective and Methods. We used participant-generated data, staff salary data, and participant observation to examine the effectiveness and cost of strategies that we used for screening, enrolling, and retaining a sociodemographically diverse sample for a risk communication and behavior change randomized controlled trial. Results. It took approximately 646 hours to contact 1,626 individuals and enroll 554 participants (505 of whom completed the baseline survey; 45.2% were members of a underrepresented racial/ethnic group, 19.4% had no college education, 49.5% were age 30-49 y). Retention at 90-d follow-up was 93%. The total cost was USD$19,898.50. The average cost was $35.92 per participant enrolled. In-person recruitment was most successful in identifying the largest proportion of screened and eligible participants who were members of underrepresented racial/ethnic populations (32.8% and 27.8%, respectively) and with no college experience (39.7% and 33.5%, respectively); it also had the highest total cost ($8,079.17). Existing research pools identified the largest proportion of younger participants (ages 30-49 y; 39.3% and 43.4% for screened and eligible, respectively). Existing listservs yielded the smallest proportion of individuals with no college experience and the fewest members of underrepresented racial/ethnic populations but had the lowest total cost ($290.33). Newspaper ads identified the fewest younger individuals and also had the highest cost per participant enrolled ($166.21). Word of mouth had the lowest cost per participant enrolled ($10.47). Conclusion. Results help medical decision-making researchers formulate recruitment plans that increase sociodemographic diversity in study samples. We also ask funders to accommodate increased costs required to maximize sociodemographic diversity in medical decision-making research. Highlights: We provide concrete strategies for recruiting, enrolling, and retaining a sociodemographically diverse study sample.We offer cost estimates for all stages of study recruitment and found that in-person recruitment was the most effective, but also the most expensive, way to identify Black participants and participants with no college experience.It is critical for investigators to have access to institutional infrastructure and resources to support conducting research that is inclusive of diverse sociodemographic groups.An intentionally diverse recruitment staff supports a diverse study sample.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Child , Financial Stress , Neoplasms/therapy , Cost of Illness , Health Expenditures , Quality of LifeABSTRACT
BACKGROUND: The promise of precision medicine could be stymied if people do not accept the legitimacy of personalized risk information. We tested 4 explanations for skepticism of personalized diabetes risk information. METHOD: We recruited participants (N = 356; Mage = 48.6 [s = 9.8], 85.1% women, 59.0% non-Hispanic white) from community locations (e.g., barbershops, churches) for a risk communication intervention. Participants received personalized information about their risk of developing diabetes and heart disease, stroke, colon cancer, and/or breast cancer (women). Then they completed survey items. We combined 2 items (recalled risk, perceived risk) to create a trichotomous risk skepticism variable (acceptance, overestimation, underestimation). Additional items assessed possible explanations for risk skepticism: 1) information evaluation skills (education, graph literacy, numeracy), 2) motivated reasoning (negative affect toward the information, spontaneous self-affirmation, information avoidance); 3) Bayesian updating (surprise), and 4) personal relevance (racial/ethnic identity). We used multinomial logistic regression for data analysis. RESULTS: Of the participants, 18% believed that their diabetes risk was lower than the information provided, 40% believed their risk was higher, and 42% accepted the information. Information evaluation skills were not supported as a risk skepticism explanation. Motivated reasoning received some support; higher diabetes risk and more negative affect toward the information were associated with risk underestimation, but spontaneous self-affirmation and information avoidance were not moderators. For Bayesian updating, more surprise was associated with overestimation. For personal relevance, belonging to a marginalized racial/ethnic group was associated with underestimation. CONCLUSION: There are likely multiple cognitive, affective, and motivational explanations for risk skepticism. Understanding these explanations and developing interventions that address them will increase the effectiveness of precision medicine and facilitate its widespread implementation.
Subject(s)
Breast Neoplasms , Motivation , Humans , Female , Middle Aged , Male , Bayes Theorem , Surveys and Questionnaires , LiteracyABSTRACT
People often use cognitive and affective heuristics when judging the likelihood of a health outcome and making health decisions. However, little research has examined how heuristics shape risk perceptions and behavior among people who make decisions on behalf of another person. We examined associations between heuristic cues and caregivers' perceptions of their child's asthma risk, the frequency of caregivers' asthma management behaviors, and child health outcomes. We used Ipsos KnowledgePanel to recruit 814 U.S. adult caregivers of children with asthma of the age <18 years. Participants completed a survey at baseline (T1) and 3 months later (T2). Caregivers who, at T1, reported greater negative affect about their child's asthma (affect heuristic cue), greater ease of imagining their child experiencing asthma symptoms (availability heuristic cue), and greater perceived similarity between their child and a child who has ever experienced asthma symptoms (representativeness heuristic cue) reported statistically significantly (p < 0.05) higher interpersonal perceived risk of their child having an exacerbation or uncontrolled asthma at T1. They also indicated at T2 that their child had poorer asthma control and more frequent exacerbations. Greater T1 negative affect was associated with more frequent T2 actions to reduce inflammation, manage triggers, and manage symptoms, and with poorer T2 child health outcomes. Heuristic cues are likely important for interpersonal-not just personal-risk perceptions. However, the interrelationship between caregivers' ratings of heuristic cues (in particular, negative affect) and risk judgments may signify a struggle with managing their child's asthma and need for extra support from health care providers or systems.
Subject(s)
Asthma , Cues , Child , Adult , Humans , Adolescent , Heuristics , Asthma/psychology , Social Perception , CognitionABSTRACT
We discuss the implications of Seidenberg and colleagues' report confirming low levels of accurate awareness of the cancer harms associated with alcohol use, including wine, beer, and liquor consumption. The authors propose that academic and lay messaging describing consumption of wine and other forms of alcohol as reducing heart disease risk has created generalized beliefs about the health benefits of drinking alcohol. This "health halo" surrounding alcohol consumption leads the public to overgeneralize alcohol health benefits to other diseases, including cancer. We discuss the need to address high levels of perceived risk uncertainty to help the public distinguish between the impact of alcohol on heart disease versus cancer, and to overcome other barriers to including alcohol use reduction as a cancer prevention strategy. Given recent increases in U.S. population drinking rates, as well as morbidity and mortality associated with alcohol use, the time is right to marshal multilevel efforts to educate the public regarding the fact that alcohol is carcinogenic. If successful, these efforts will have multiple downstream benefits, including the ability of the lay public to use the most up-to-date scientific evidence to make informed decisions about whether, and how much, to engage in a risky behavior. See related article by Seidenberg et al., p. 46.
Subject(s)
Heart Diseases , Neoplasms , Wine , Humans , Alcohol Drinking/adverse effects , Alcohol Drinking/epidemiology , Alcoholic Beverages , Ethanol , Neoplasms/epidemiology , Neoplasms/etiology , Neoplasms/prevention & controlABSTRACT
Adoption of COVID-19 preventive behaviors involves considering personal risk and the risk to others. Consequently, many COVID-19 prevention measures are intended to protect both the individual engaging in the behavior and others in the population. Yet, the preponderance of research is focused on perceptions of an individual's personal risk, making risk perception for others a critical area for investigation. Two worldview orientations describing values regarding how society should be organized, hierarchy-beliefs prioritizing social hierarchy, and individualism-beliefs prioritizing personal autonomy, have been linked to a range of risk perceptions. This study objective is to examine the association of worldview orientations with COVID-19 risk perceptions for oneself and others in a United States context. Using a national sample of 410 U.S. adults, we examined the associations between worldview orientations and six facets of risk (absolute risk, risk certainty, comparative risk, risk severity, fear, feelings of risk) using demographics-adjusted multivariable regression models. We conducted separate analyses for each of the following referents: (1) personal risk, (2) risk for the average person within the United States, and (3) risk to people within specific social groups (e.g., family, co-workers). Results indicate that stronger hierarchical and individualistic orientations were associated with lower COVID-19 risk perceptions for all three referents. The results were particularly consistent for fear and feelings of risk. Individualism was related to higher risk perception certainty for personal risk and the risk to people within specific social groups. Hierarchy was related to lower perceived severity for all referents. Findings suggest that U.S. public health messaging sensitive to worldview orientations may be needed to optimize acceptance of recommendations for protective behaviors, including vaccination. The relationship of worldview orientations to health risk perceptions may help guide messaging for future infectious outbreaks where risk perceptions are t drivers of protective behavior.
Subject(s)
COVID-19 , Adult , Humans , United States/epidemiology , COVID-19/epidemiology , Social Perception , Disease Outbreaks , Public HealthABSTRACT
OBJECTIVE: To critically analyze pediatric opioid prescription patterns after cleft and craniosynostosis repairs. DESIGN: Observational study 1) retrospectively reviewing pediatric opioid prescriptions from July 2018 to June 2019 and 2) prospectively surveying patients about actual opioid use from August 2019 to February 2020. SETTING: Academic tertiary care pediatric hospital. PATIENTS: 133 pediatric patients undergoing cleft lip and/or palate or craniosynostosis repairs. Prospective surveys were offered at postoperative visits; 45 of 69 eligible patients were enrolled. INTERVENTION: None. MAIN OUTCOME MEASURES: Opioid doses prescribed at discharge and actual home opioid use. RESULTS: 90 patients with cleft lip and/or palate and 43 patients with craniosynostosis were included. Median prescribed opioid doses were 10.3 for cleft lip and/or palate procedures (range 0-75), and 14.3 for craniosynostosis repairs (range 0-50). In patients with cleft lip and/or palate, there was a negative correlation between age at surgery and prescribed opioid doses (rs = -0.228, p = 0.031). 45 patients completed surveys of home opioid use. No patients used more than 10 doses. Forty percent used no opioids at home, 33% used 1 to 2 doses, 18% used 3 to 5 doses, and 9% used 6 to 10 doses. CONCLUSIONS: Opioid prescriptions vary widely after common craniofacial procedures. Younger patients with cleft lip and/or palate may be more likely to be prescribed more doses. Actual home opioid use is less than prescribed amounts, with most patients using five or fewer doses. A prescribing guideline is proposed.
Subject(s)
Cleft Lip , Cleft Palate , Craniosynostoses , Child , Humans , Analgesics, Opioid/therapeutic use , Cleft Lip/surgery , Retrospective Studies , Prospective Studies , Cleft Palate/surgery , Practice Patterns, Dentists' , Craniosynostoses/surgeryABSTRACT
Rational numbers (i.e., fractions, percentages, decimals, and whole-number frequencies) are notoriously difficult mathematical constructs. Yet correctly interpreting rational numbers is imperative for understanding health statistics, such as gauging the likelihood of side effects from a medication. Several pernicious biases affect health decision-making involving rational numbers. In our novel developmental framework, the natural-number bias-a tendency to misapply knowledge about natural numbers to all numbers-is the mechanism underlying other biases that shape health decision-making. Natural-number bias occurs when people automatically process natural-number magnitudes and disregard ratio magnitudes. Math-cognition researchers have identified individual differences and environmental factors underlying natural-number bias and devised ways to teach people how to avoid these biases. Although effective interventions from other areas of research can help adults evaluate numerical health information, they circumvent the core issue: people's penchant to automatically process natural-number magnitudes and disregard ratio magnitudes. We describe the origins of natural-number bias and how researchers may harness the bias to improve rational-number understanding and ameliorate innumeracy in real-world contexts, including health. We recommend modifications to formal math education to help children learn the connections among natural and rational numbers. We also call on researchers to consider individual differences people bring to health decision-making contexts and how measures from math cognition might identify those who would benefit most from support when interpreting health statistics. Investigating innumeracy with an interdisciplinary lens could advance understanding of innumeracy in theoretically meaningful and practical ways.
Subject(s)
Cognition , Comprehension , Adult , Child , Humans , Learning , Mathematics , ProbabilityABSTRACT
Visual displays, such as icon arrays and risk ladders, are often used to communicate numerical health information. Number lines improve reasoning with rational numbers but are seldom used in health contexts. College students solved ratio problems related to COVID-19 (e.g., number of deaths and number of cases) in one of four randomly assigned conditions: icon arrays, risk ladders, number lines, or no accompanying visual display. As predicted, number lines facilitated performance on these problems-the number line condition outperformed the other visual display conditions, which did not perform any better than the no visual display condition. In addition, higher performance on the health-related ratio problems was associated with higher COVID-19 worry for oneself and others, higher perceptions of COVID-19 severity, and higher endorsement of intentions to engage in preventive health behaviors, even when controlling for baseline math skills. These findings have important implications for effectively presenting health statistics. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
Subject(s)
COVID-19 , Adult , Humans , Problem Solving , Health BehaviorABSTRACT
The negative consequences of the COVID-19 pandemic on mental health have been widely reported, but less is known about how the impact of COVID-19 on others in one's social circle shapes these high distress levels. This study examines associations between social COVID-19 exposure-knowing someone who had a COVID-19 infection-and psychological functioning, as well as whether socio-demographic factors moderate these relationships. In June 2020, respondents (N = 343) from clinics in Tampa, Florida, U.S.A. reported whether they had social COVID-19 exposure, anxiety, depression, and stress, and other COVID-19-related concerns. Social COVID-19 exposure was associated with increased anxiety, stress, and concerns about a family member getting sick, and concerns about drinking and substance use. Several associations between exposure and psychological functioning were stronger in women, younger people, and people with lower income, implying these groups face elevated psychological risks due to the pandemic, and should be prioritized in mental health recovery efforts.
Subject(s)
COVID-19 , Female , Humans , SARS-CoV-2 , Pandemics , Depression/psychology , Stress, Psychological/psychology , Anxiety/psychologyABSTRACT
OBJECTIVE: The Parent Proxy Asthma Control Test (PP-ACT) is a self-report measure of asthma control completed by caregivers on behalf of a child. We examined the psychometric properties and the reliability and predictive validity of the PP-ACT. METHODS: We conducted two studies (one cross-sectional, one longitudinal over three months) that surveyed caregivers (N = 1622) of children with asthma. Caregivers completed the PP-ACT and a variety of other measures, including child health outcomes. RESULTS: We found clear evidence that the five-item PP-ACT assesses two distinct constructs: Items 1-4 (which we call the PP-ACT4) assess symptoms, impairment, and use of a short acting beta-2 blocker (albuterol); Item 5 assesses caregivers' global subjective assessment of their child's asthma control. In addition, the two constructs function as unique predictors of asthma outcomes. Both the PP-ACT4 and Item 5 predicted unique variance in ED visits, the number of symptom-free days, and child quality of life. Only the PP-ACT4 predicted frequency of ICS use and only at Time 1 in Study 1. Conversely, Item 5 predicted exacerbation frequency whereas the PP-ACT4 did not. CONCLUSION: Our findings suggest that researchers and clinicians should treat the PP-ACT4 and Item 5 as distinct indicators of asthma control because they differentially predict asthma outcomes and likely have distinct meanings to caregivers.Supplemental data for this article is available online at https://doi.org/10.1080/02770903.2022.2036755 .
Subject(s)
Asthma , Quality of Life , Child , Humans , Asthma/diagnosis , Asthma/drug therapy , Psychometrics , Cross-Sectional Studies , Reproducibility of Results , Surveys and Questionnaires , Caregivers , ParentsABSTRACT
Several studies suggest that "don't know" (DK) responses to risk perception items may represent meaningful expressions of uncertainty about disease risk. However, researchers are often discouraged from including a DK response option in survey items due to concerns about respondents overusing it to minimize cognitive effort-a phenomenon often referred to as satisficing. Our objective was to investigate whether patterns of DK responses to risk perception survey items were consistent with satisficing behavior. We conducted a secondary analysis of survey data from 814 parents and guardians (hereafter caregivers) of children with asthma. Caregivers answered 18 items assessing their perceived risk of their child experiencing two types of poor asthma outcomes: asthma exacerbation, and low asthma control. We examined differences in the frequency and distribution of DK responses across all 18 items and by type of risk perception item (i.e., 2 vs. 5 response options, absolute vs. comparative risk). We found that 32% (n=548) of respondents marked DK at least once. Of the 266 caregivers who provided any DK response, most did so for only 1 or 2 items (51.9%, n=138), and only 6% (n=15) answered DK to more than half of the items. Using random coefficient Poisson models, we found more DK responding for dichotomous absolute (30.1%) than ordinal absolute items (5.3%), b=1.72, p<.001. We also found fewer DK responses to the ordinal absolute items than the comparative items (8.2%), b=-0.49, p<.001. Using Chi-square tests, we found that inattentive responding was not associated with responding DK. Our findings suggest that satisficing is unlikely to completely explain DK responding to perceived risk survey items. Researchers who exclude DK response options from risk perception survey items may obtain an incomplete understanding of their study sample's beliefs about risk.
ABSTRACT
Purpose: Although several indicators suggest that pediatric asthma control in the United States improved early in the pandemic, other indicators suggest not. Missing are reports from caregivers of the experiences of their children with asthma early in the pandemic. Methods: Using the PP-ACT and other measures that we specifically constructed for our research, we conducted a cross-sectional national survey of US caregivers of children with asthma (N=595) to examine perceived change in their child's asthma control and changes in reports of ED visits and use of emergency relief medicine and controller medicine pre-pandemic (January to March 2020) versus early-pandemic (June to September 2020). Results: Caregivers fell into three groups: most caregivers perceived that their child's asthma control was improved (50.3%) or unchanged (41.2%), and few reported worse control (8.5%). Surprisingly, all three groups of caregivers reported similar frequencies of early-pandemic and pre-pandemic ED visits and use of emergency relief medicine. Also surprising, caregivers who perceived their child's asthma as more controlled (compared with the other two groups) reported more frequent ED visits and use of emergency relief medicine, yet also more use of controller medicine at both early-pandemic and pre-pandemic. Conclusion: The mismatch between caregivers' perceptions of their child's early-pandemic asthma control and their reports of ED visits and use of emergency relief medicine suggests that caregivers may rely on a gist (a global evaluation that can include nonbiomedical evidence) when estimating their child's asthma control. Caregivers and their families could benefit from help from clinicians in understanding the discrepancy between subjective asthma control and asthma control indicators and in understanding what well-controlled asthma looks and feels like.