Search

Context: Psychological distress is associated with adverse health outcomes in serious illness and magnified among patients of low socioeconomic status. Aspects of one's culture, such as religion and spirituality, can influence these patients' coping response to distress. Advanced chronic kidney disease (CKD) is a serious illness that disproportionately affects patients of low socioeconomic status, but a theory-based understanding of this group's lived experience of CKD is lacking., Objectives: We explored the cognitions, emotions, and coping behaviors of patients with CKD with emphasis on those of low socioeconomic status. We further inquired into any influences of religion or spirituality., Methods: We interviewed 50 English-speaking or Spanish-speaking adults with advanced CKD from three medical centers in Nashville, Tennessee. Analyses occurred with isolation of themes; development of a coding system; and creation of a conceptual framework using an inductive-deductive approach., Results: Median age was 65 years; median annual income was $17,500 per year; and 48% of participants had not progressed beyond high school. Key beliefs (awareness of mortality and lack of control) influenced patients' emotions (existential distress in the form of death anxiety, prognostic uncertainty, and hopelessness) and coping behaviors (acceptance, avoidance, emotion regulation via spirituality, and seeking socialsupport via a religious community)., Conclusion: Individuals with advanced CKD and low socioeconomic status lack control over disease progression, experience death anxiety and existential distress, and emphasize spirituality to cope. Our study identifies novel components for a psychotherapeutic intervention for patients with advanced CKD at high risk for adverse health outcomes., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Introduction: Educational materials used in prostate cancer shared decision-making are often written above the health literacy levels of the patients that may benefit the most from such tools. Poor understanding the oncologic and functional outcomes of prostate cancer treatment may influence patient regret during this process. In this study, we assess the association between health literacy, numeracy, prostate-related knowledge and treatment regret in a diverse population., Materials and Methods: Patients obtaining care between June and August of 2016 at both community-based and academic tertiary care facilities were assessed for health literacy and numeracy using validated instruments. Prostate knowledge was tested in those patients without a history of prostate cancer using a 29-item questionnaire and patient-level predictors of knowledge were assessed. Prostate cancer treatment regret was assessed in those patients who had a history of prostate cancer., Results: A total of 90 patients were enrolled, 38 (42%) of whom had a history of prostate cancer. African American race (I = 0.039), financial strain (P < 0.001), and educational attainment (P < 0.001) were all associated with lower health literacy on multivariable analysis. Possessing a professional degree (P = 0.021) and higher health literacy (P = 0.001) were associated with greater prostate-related knowledge. Of those with a history of prostate cancer, 9 (24%) expressed treatment regret. Patients with regret were more likely to be African American (n = 6, 66.7% vs. 5, 17.2%, P = 0.004), not married (P = 0.016), and score lower on the literacy (1.0 vs. 8.0, P = 0.009) and numeracy (10.0 vs. 16.0, P = 0.016) scales., Conclusions: We identified lower health literacy among African American men, and lower prostate-related knowledge in those with poor health literacy. To our knowledge, this is the first study to show an association between health literacy and prostate cancer treatment regret., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: Develop and evaluate a measure assessing helpful and harmful family/friends' involvement in adults' type 2 diabetes (T2D) self-management., Methods: Prior mixed-methods research, cognitive interviews, and expert input informed measure development. We administered the measure in two studies (N = 392 and N = 512) to evaluate its factor structure, internal consistency reliability, test-retest reliability, and construct, criterion and predictive validity., Results: Analyses supported a two-factor solution: helpful and harmful involvement with internal consistency reliability α = .86 and .72, respectively. Three-month test-retest reliability was rho = 0.64 for helpful and rho = 0.61 for harmful (both p < 0.001). Over 90% reported at least one instance of family/friend involvement in the past month. Associations with other measures of diabetes involvement were as anticipated (all p < .01). Helpful and harmful involvement were independently associated with diabetes self-efficacy, diet, blood glucose testing and medication adherence cross-sectionally [βs 0.13-0.39 helpful, -0.12--0.33 harmful; all p < .05]. Harmful involvement independently predicted worse HbA1c (β = 0.08), and worsening HbA1c over three months (β = 0.12, both p < 0.05)., Conclusion: The Family and Friend Involvement in Adults' Diabetes (FIAD) is a reliable and valid measure assessing family/friend involvement in adults' T2D., Practice Implications: FIAD use can inform interventions to improve social contexts in which adults manage diabetes., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Chronic Kidney Disease (CKD) is a major burden on patients and the health care system. Treatment of CKD requires dedicated involvement from both caretakers and patients. Self-efficacy, also known as perceived competence, contributes to successful maintenance of patient's CKD self-management behaviors such as medication adherence and dietary regulations. Despite a clear association between self-efficacy and improved CKD outcomes, there remains a lack of validated self-report measures of CKD self-efficacy. To address this gap, the Perceived Kidney/Dialysis Self-Management Scale (PKDSMS) was adapted from the previously validated Perceived Medical Condition Self-Management Scale. We then sought to validate this using data from two separate cohorts: a cross-sectional investigation of 146 patients with end-stage renal disease receiving maintenance hemodialysis and a longitudinal study of 237 patients with CKD not receiving dialysis. The PKDSMS was found to be positively and significantly correlated with self-management behaviors and medication adherence in both patient cohorts. The PKDSMS had acceptable reliability, was internally consistent, and exhibited predictive validity between baseline PKDSMS scores and self-management behaviors across multiple time points. Thus, the PKDSMS is a valid and reliable measure of CKD patient self-efficacy and supports the development of interventions enhancing perceived competence to improve CKD self-management., (Copyright © 2017 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.)

Objective: To identify eating styles from 6 eating behaviors and test their association with body mass index (BMI) among adults., Design: Cross-sectional analysis of self-report survey data., Setting: Twelve primary care and specialty clinics in 5 states., Participants: Of 11,776 adult patients who consented to participate, 9,977 completed survey questions., Variables Measured: Frequency of eating healthy food, frequency of eating unhealthy food, breakfast frequency, frequency of snacking, overall diet quality, and problem eating behaviors. The primary dependent variable was BMI, calculated from self-reported height and weight data., Analysis: k-Means cluster analysis of eating behaviors was used to determine eating styles. A categorical variable representing each eating style cluster was entered in a multivariate linear regression predicting BMI, controlling for covariates., Results: Four eating styles were identified and defined by healthy vs unhealthy diet patterns and engagement in problem eating behaviors. Each group had significantly higher average BMI than the healthy eating style: healthy with problem eating behaviors (β = 1.9; P < .001), unhealthy (β = 2.5; P < .001), and unhealthy with problem eating behaviors (β = 5.1; P < .001)., Conclusions and Implications: Future attempts to improve eating styles should address not only the consumption of healthy foods but also snacking behaviors and the emotional component of eating., (Copyright © 2017 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.)

Objective: Evaluate the effect of perceived health competence, a patient's belief in his or her ability to achieve health-related goals, on health behavior and health-related quality of life., Methods: We analyzed 2063 patients hospitalized with acute coronary syndrome and/or congestive heart failure at a large academic hospital in the United States. Multivariable linear regression models investigated associations between the two-item perceived health competence scale (PHCS-2) and positive health behaviors such as medication adherence and exercise (Health Behavior Index) as well as health-related quality of life (5-item Patient Reported Outcome Information Measurement System Global Health Scale)., Results: After multivariable adjustment, perceived health competence was highly associated with health behaviors (p<0.001) and health-related quality of life (p<0.001). Low perceived health competence was associated with a decrease in health-related quality of life between hospitalization and 90days after discharge (p<0.001)., Conclusions: Perceived health competence predicts health behavior and health-related quality of life in patients hospitalized with cardiovascular disease as well as change in health-related quality of life after discharge., Practice Implications: Patients with low perceived health competence may be at risk for a decline in health-related quality of life after hospitalization and thus a potential target for counseling and other behavioral interventions., (Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.)

Objective: Diabetes patients with limited resources often experience suboptimal care. Less is known about the role of effective health communication (HC) in caring for low income diabetes patients., Methods: Ten health department clinics in TN participated in a trial evaluating a literacy-sensitive communication intervention. We assessed the quality of baseline HC and measured associations with diabetes outcomes. Assessments included: demographics, measures of HC, health literacy, self-care behaviors, self-efficacy, medication non-adherence, treatment satisfaction, and A1C. Unadjusted and adjusted multivariable regression models were used to test associations., Results: Participants (N=411) were 49.7±9.5 years, 61% female, uninsured (96%), with A1C 9.6±2.1. In unadjusted analyses, better communication, was associated with lower medication non-adherence (OR 0.40-0.68, all p<0.05), higher treatment satisfaction (OR 1.76-1.96, all p<0.01), portion size reduction (OR 1.43, p<0.05), diabetes self-efficacy (OR 1.41, p<0.05), and lower A1C (β=-0.06, p<0.01). In adjusted analyses, communication quality remained associated with lower medication non-adherence (AOR 0.39-0.68, all p<0.05), and higher treatment satisfaction (AOR 1.90-2.21, all p<0.001)., Conclusions: Better communication between low-income patients and providers was independently associated with lower medication non-adherence and higher treatment satisfaction., Practice Implications: Communication quality may be an important modifiable approach to improving diabetes care for vulnerable populations., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Objective: Problem solving is a critical diabetes self-management skill. Because of a lack of clinically feasible measures, our aim was to develop and validate a self-report self-management problem solving questionnaire for adolescents with type 1 diabetes (T1D)., Methods: A multidisciplinary team of diabetes experts generated questionnaire items that addressed diabetes self-management problem solving. Iterative feedback from parents and adolescents resulted in 27 items. Adolescents from two studies (N=156) aged 13-17 were recruited through a pediatric diabetes clinic and completed measures through an online survey. Glycemic control was measured by HbA1c recorded in the medical record., Results: Empirical elimination of items using principal components analyses resulted in a 13-item unidimensional measure, the diabetes adolescent problem solving questionnaire (DAPSQ) that explained 56% of the variance. The DAPSQ demonstrated internal consistency (Cronbach's alpha=0.92) and was correlated with diabetes self-management (r=0.53, p<.001), self-efficacy (r=0.54, p<.001), and glycemic control (r=-0.24, p<.01)., Conclusion: The DAPSQ is a brief instrument for assessment of diabetes self-management problem solving in youth with T1D and is associated with better self-management behaviors and glycemic control., Practice Implications: The DAPSQ is a clinically feasible self-report measure that can provide valuable information regarding level of self-management problem solving and guide patient education., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Objective: Because existing numeracy measures may not optimally assess 'health numeracy', we developed and validated the General Health Numeracy Test (GHNT)., Methods: An iterative pilot testing process produced 21 GHNT items that were administered to 205 patients along with validated measures of health literacy, objective numeracy, subjective numeracy, and medication understanding and medication adherence. We assessed the GHNT's internal consistency reliability, construct validity, and explored its predictive validity., Results: On average, participants were 55.0 ± 13.8 years old, 64.9% female, 29.8% non-White, and 51.7% had incomes ≤$39K with 14.4 ± 2.9 years of education. Psychometric testing produced a 6-item version (GHNT-6). The GHNT-21 and GHNT-6 had acceptable-good internal consistency reliability (KR-20=0.87 vs. 0.77, respectively). Both versions were positively associated with income, education, health literacy, objective numeracy, and subjective numeracy (all p<.001). Furthermore, both versions were associated with participants' understanding of their medications and medication adherence in unadjusted analyses, but only the GHNT-21 was associated with medication understanding in adjusted analyses., Conclusions: The GHNT-21 and GHNT-6 are reliable and valid tools for assessing health numeracy., Practice Implications: Brief, reliable, and valid assessments of health numeracy can assess a patient's numeracy status, and may ultimately help providers and educators tailor education to patients., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Context: Because surgery, radiation, and/or chemotherapy disrupt lymphatic structures, damage soft tissue leading to scar tissue formation and fibrosis, and further affect lymphatic function, patients with head and neck cancer may be at high risk for developing secondary lymphedema. Yet, no published data are available regarding the prevalence of secondary lymphedema after head and neck cancer treatment., Objectives: The aim of this study was to examine prevalence of secondary lymphedema in patients with head and neck cancer., Methods: The study included 81 patients with head and neck cancer who were three months or more post-treatment. External lymphedema was staged using Foldi's lymphedema scale. Internal lymphedema was identified through a flexible fiber-optic endoscopic or mirror examination. Patterson's scale was used to grade degrees of internal lymphedema., Results: Of the 81 patients, 75.3% (61 of 81) had some form of late-effect lymphedema. Of those, 9.8% (6 of 61) only had external, 39.4% (24 of 61) only had internal, and 50.8% (31 of 61) had both types., Conclusion: Lymphedema is a common late effect in patients with head and neck cancer, and it develops in multiple external and internal anatomical locations. During physical examination and endoscopic procedures, clinicians should assess patients with head and neck cancer for late-effect lymphedema. Referral for treatment should be considered when lymphedema is noted. Research is needed to examine risk factors of lymphedema in patients with head and neck cancer and its effects on patients' symptoms, function, and quality of life., (Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

It is likely that patients with chronic kidney disease (CKD) have a limited understanding of their illness. Here we studied the relationships between objective and perceived knowledge in CKD using the Kidney Disease Knowledge Survey and the Perceived Kidney Disease Knowledge Survey. We quantified perceived and objective knowledge in 399 patients at all stages of non-dialysis-dependent CKD. Demographically, the patient median age was 58 years, 47% were women, 77% had stages 3-5 CKD, and 83% were Caucasians. The overall median score of the perceived knowledge survey was 2.56 (range: 1-4), and this new measure exhibited excellent reliability and construct validity. In unadjusted analysis, perceived knowledge was associated with patient characteristics defined a priori, including objective knowledge and patient satisfaction with physician communication. In adjusted analysis, older age, male gender, and limited health literacy were associated with lower perceived knowledge. Additional analysis revealed that perceived knowledge was associated with significantly higher odds (2.13), and objective knowledge with lower odds (0.91), of patient satisfaction with physician communication. Thus, our results present a mechanism to evaluate distinct forms of patient kidney knowledge and identify specific opportunities for education tailored to patients with CKD.

Objective: Describe intervention processes associated with an Internet self-management problem solving program for adolescents with type 1 diabetes, and relate participant characteristics to program use., Methods: Forty-one adolescents with type 1 diabetes, aged 13-17, participated in an Internet intervention., Results: Participants reported psychosocial self-management barriers related to social issues (45%), time pressures (22%), and emotions (25%). Most adolescents (76%) completed the two guided problem solving cycles, and most (97%) problems were appropriate and specific to diabetes. Of the 61 diabetes problems reported, 92% were mostly or completely solved. Baseline hemoglobin A1c, diabetes duration, and age were not related to online activities, however females posted more often to the forum (U=130.0, Z=2.13, p=.033). The majority of parents (87%) interacted with their child about the website., Conclusion: Adolescents experience psychosocial barriers to self-management that can be addressed by teaching problem solving via the Internet., Practice Implications: An Internet self-management problem solving program with minimal external support provides a viable option for diabetes clinics to improve pediatric diabetes outcomes., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Objective: To describe the state of the literature on stigma associated with children's mental disorders and highlight gaps in empirical work., Method: We reviewed child mental illness stigma articles in (English only) peer-reviewed journals available through Medline and PsychInfo. We augmented these with adult-oriented stigma articles that focus on theory and measurement. A total of 145 articles in PsychInfo and 77 articles in MEDLINE met search criteria. The review process involved identifying and appraising literature convergence on the definition of critical dimensions of stigma, antecedents, and outcomes reported in empirical studies., Results: We found concurrence on three dimensions of stigma (negative stereotypes, devaluation, and discrimination), two contexts of stigma (self, general public), and two targets of stigma (self/individual, family). Theory and empirics on institutional and self-stigma in child populations were sparse. Literature reports few theoretic frameworks and conceptualizations of child mental illness stigma. One model of help seeking (the FINIS) explicitly acknowledges the role of stigma in children's access and use of mental health services., Conclusions: Compared with adults, children are subject to unique stigmatizing contexts that have not been adequately studied. The field needs conceptual frameworks that get closer to stigma experiences that are causally linked to how parents/caregivers cope with children's emotional and behavioral problems, such as seeking professional help. To further research in child mental illness, we suggest an approach to adapting current theoretical frameworks and operationalizing stigma, highlighting three dimensions of stigma, three contexts of stigma (including institutions), and three targets of stigma (self/child, family, and services).

Background: A cross-sectional content analysis nested within a randomized, controlled trial was conducted to collect information on provider responses to computer alerts regarding guideline recommendations for patients with suboptimal hypertension care., Methods: Participants were providers who cared for 1,017 patients with uncontrolled hypertension on a single antihypertensive agent within Veterans Affairs primary care clinics. All reasons for action or inaction were sorted into a framework to explain the variation in guideline adaptation., Results: The 184 negative provider responses to computer alerts contained explanations for not changing patient treatment; 76 responses to the alerts were positive, that is, the provider was going to make a change in antihypertensive regimen. The negative responses were categorized as: inertia of practice (66%), lack of agreement with specific guidelines (5%), patient-based factors (17%), environmental factors (10%), and lack of knowledge (2%). Most of the 135 providers classified as inertia of practice indicated, "Continue current medications and I will discuss at the next visit." The median number of days until the next visit was 45 days (interquartile range, 29 to 78 days)., Discussion: Clinical inertia was the primary reason for failing to engage in otherwise indicated treatment change in a subgroup of patients. A framework was provided as a taxonomy for classification of provider barriers.