Jennifer L. Ridgeway

Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study

Background: Burden of treatment refers to the workload of health care as well as its impact on patient functioning and well-being. We set out to build a conceptual framework of issues descriptive of burden of treatment from the perspective of the complex patient, as a first step in the development of a new patient-reported measure. Methods: We conducted semistructured interviews with patients seeking medication therapy management services at a large, academic medical center. All patients had a complex regimen of self-care (including polypharmacy), and were coping with one or more chronic health conditions. We used framework analysis to identify and code themes and subthemes. A conceptual framework of burden of treatment was outlined from emergent themes and subthemes. Results: Thirty-two patients (20 female, 12 male, age 26–85 years) were interviewed. Three broad themes of burden of treatment emerged including: the work patients must do to care for their health; problem-focused strategies and tools to facilitate the work of self-care; and factors that exacerbate the burden felt. The latter theme encompasses six subthemes including challenges with taking medication, emotional problems with others, role and activity limitations, financial challenges, confusion about medical information, and health care delivery obstacles. Conclusion: We identified several key domains and issues of burden of treatment amenable to future measurement and organized them into a conceptual framework. Further development work on this conceptual framework will inform the derivation of a patient-reported measure of burden of treatment.

A systematic review of patient-reported measures of burden of treatment in three chronic diseases

Background Burden of treatment refers to the workload of health care and its impact on patient functioning and well-being. There are a number of patient-reported measures that assess burden of treatment in single diseases or in specific treatment contexts. A review of such measures could help identify content for a general measure of treatment burden that could be used with patients dealing with multiple chronic conditions. We reviewed the content and psychometric properties of patient-reported measures that assess aspects of treatment burden in three chronic diseases, ie, diabetes, chronic kidney disease, and heart failure. Methods We searched Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, and EBSCO CINAHL through November 2011. Abstracts were independently reviewed by two people, with disagreements adjudicated by a third person. Retrieved articles were reviewed to confirm relevance, with patient-reported measures scrutinized to determine consistency with the definition of burden of treatment. Descriptive information and psychometric properties were extracted. Results A total of 5686 abstracts were identified from the database searches. After abstract review, 359 full-text articles were retrieved, of which 76 met our inclusion criteria. An additional 22 articles were identified from the references of included articles. From the 98 studies, 57 patient-reported measures of treatment burden (full measures or components within measures) were identified. Most were multi-item scales (89%) and assessed treatment burden in diabetes (82%). Only 15 measures were developed using direct patient input and had demonstrable evidence of reliability, scale structure, and multiple forms of validity; six of these demonstrated evidence of sensitivity to change. We identified 12 content domains common across measures and disease types. Conclusion Available measures of treatment burden in single diseases can inform derivation of a patient-centered measure of the construct in patients with multiple chronic conditions. Patients should take part in developing the measure to ensure salience and relevance.

Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study

Purpose Patients with multiple chronic conditions (multimorbidity) often require ongoing treatment and complex self-care. This workload and its impact on patient functioning and well-being are, together, known as treatment burden. This study reports on factors that patients with multimorbidity draw on to lessen perceptions of treatment burden. Patients and methods Interviews (n=50) and focus groups (n=4 groups, five to eight participants per group) were conducted with patients receiving care in a large academic medical center or an urban safety-net hospital. Interview data were analyzed using qualitative framework analysis methods, and themes and subthemes were used to identify factors that mitigate burden. Focus groups were held to confirm these findings and clarify any new issues. This study was part of a larger program to develop a patient-reported measure of treatment burden. Results Five major themes emerged from the interview data. These included: 1) problem-focused strategies, like routinizing self-care, enlisting support of others, planning for the future, and using technology; 2) emotion-focused coping strategies, like maintaining a positive attitude, focusing on other life priorities, and spirituality/faith; 3) questioning the notion of treatment burden as a function of adapting to self-care and comparing oneself to others; 4) social support (informational, tangible, and emotional assistance); and 5) positive aspects of health care, like coordination of care and beneficial relationships with providers. Additional subthemes arising from focus groups included preserving autonomy/independence and being proactive with providers. Conclusion Patients attempt to lessen the experience of treatment burden using a variety of personal, social, and health care resources. Assessing these factors in tandem with patient perceptions of treatment burden can provide a more complete picture of how patients fit complex self-care into their daily lives.

Perspectives on Physical Activity Among Immigrants and Refugees to a Small Urban Community in Minnesota

Immigrants and refugees to the United States exhibit relatively low levels of physical activity, but reasons for this disparity are poorly understood. 16 gender and age-stratified focus groups were conducted among 127 participants from heterogenous immigrant and refugee groups (Cambodian, Mexican, Somali, Sudanese) in a small Minnesota urban community. We found many similarities in perceived barriers and facilitators to physical activity between heterogeneous immigrant and refugee groups. While the benefits of physical activity were widely acknowledged, lack of familiarity and comfort with taking the first steps towards being physically active were the most significant barriers to physical activity. Participants described being motivated by social support from family, friends, and communities to be physically active. Our findings suggest that shared experiences of immigration and associated social, economic, and linguistic factors influence how physical activity is understood, conceptualized and practiced.

Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions

Purpose The workload of health care and its impact on patient functioning and well-being is known as treatment burden. The purpose of this study was to finalize a conceptual framework of treatment burden that will be used to inform a new patient-reported measure of this construct. Patients and methods Semi-structured interviews were conducted with 50 chronically ill patients from a large academic medical center (n=32) and an urban safety-net hospital (n=18). We coded themes identifying treatment burden, with the themes harmonized through discussion between multiple coders. Four focus groups, each with five to eight participants with chronic illness, were subsequently held to confirm the thematic structure that emerged from the interviews. Results Most interviewed patients (98%) were coping with multiple chronic conditions. A preliminary conceptual framework using data from the first 32 interviews was evaluated and was modified using narrative data from 18 additional interviews with a racially and socioeconomically diverse sample of patients. The final framework features three overarching themes with associated subthemes. These themes included: 1) work patients must do to care for their health (eg, taking medications, keeping medical appointments, monitoring health); 2) challenges/stressors that exacerbate perceived burden (eg, financial, interpersonal, provider obstacles); and 3) impacts of burden (eg, role limitations, mental exhaustion). All themes and subthemes were subsequently confirmed in focus groups. Conclusion The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

Integration of mental health resources in a primary care setting leads to increased provider satisfaction and patient access

OBJECTIVE This evaluation assessed the opinions and experiences of primary care providers and their support staff before and after implementation of expanded on-site mental health services and related system changes in a primary care clinic. METHOD Individual semistructured interviews, which contained a combination of open-ended questions and rating scales, were used to elicit opinions about mental health services before on-site system and resource changes occurred and repeated following changes that were intended to improve access to on-site mental health care. RESULTS In the first set of interviews, prior to expanding mental health services, primary care providers and support staff were generally dissatisfied with the availability and scheduling of on-site mental health care. Patients were often referred outside the primary care clinic for mental health treatment, to the detriment of communication and coordinated care. Follow-up interviews conducted after expansion of mental health services, scheduling refinements and other system changes revealed improved provider satisfaction in treatment access and coordination of care. Providers appreciated immediate and on-site social worker availability to triage mental health needs and help access care, and on-site treatment was viewed as important for remaining informed about patient care the primary care providers are not delivering directly. CONCLUSIONS Expanding integrated mental health services resulted in increased staff and provider satisfaction. Our evaluation identified key components of satisfaction, including on-site collaboration and assistance triaging patient needs. The sustainability of integrated models of care requires additional study.

A focus group study of healthy eating knowledge, practices, and barriers among adult and adolescent immigrants and refugees in the United States

BackgroundImmigrants and refugees to the United States exhibit lower dietary quality than the general population, but reasons for this disparity are poorly understood. In this study, we describe the meanings of food, health and wellbeing through the reported dietary preferences, beliefs, and practices of adults and adolescents from four immigrant and refugee communities in the Midwestern United States.MethodsUsing a community based participatory research approach, we conducted a qualitative research study with 16 audio-recorded focus groups with adults and adolescents who self-identified as Mexican, Somali, Cambodian, and Sudanese. Focus group topics were eating patterns, perceptions of healthy eating in the country of origin and in the U.S., how food decisions are made and who in the family is involved in food preparation and decisions, barriers and facilitators to healthy eating, and gender and generational differences in eating practices. A team of investigators and community research partners analyzed all transcripts in full before reducing data to codes through consensus. Broader themes were created to encompass multiple codes.ResultsResults show that participants have similar perspectives about the barriers (personal, environmental, structural) and benefits of healthy eating (e.g., ‘junk food is bad’). We identified four themes consistent across all four communities: Ways of Knowing about Healthy Eating (‘Meanings;’ ‘Motivations;’ ‘Knowledge Sources’), Eating Practices (‘Family Practices;’ ‘Americanized Eating Practices’ ‘Eating What’s Easy’), Barriers (‘Taste and Cravings;’ ‘Easy Access to Junk Food;’ ‘Role of Family;’ Cultural Foods and Traditions;’ ‘Time;’ ‘Finances’), and Preferences for Intervention (‘Family Counseling;’ Community Education;’ and ‘Healthier Traditional Meals.’). Some generational (adult vs. adolescents) and gender differences were observed.ConclusionsOur study demonstrates how personal, structural, and societal/cultural factors influence meanings of food and dietary practices across immigrant and refugee populations. We conclude that cultural factors are not fixed variables that occur independently from the contexts in which they are embedded.

Potential Bias in the Bank: What Distinguishes Refusers, Nonresponders and Participants in a Clinic-Based Biobank?

Background: Biobanks are an important resource for genetic and epidemiologic research, but bias may be introduced if those who accept the recruitment invitation differ systematically from those who do not in terms of attributes important to health-related investigations. To understand potential bias in a clinic-based biobank of biological samples, including genetic data linked to electronic health record information, we compared patient characteristics and self-reported information among participants, nonresponders and refusers. We also compared reasons for nonparticipation between refusers and nonresponders to elucidate potential pathways to reduce nonparticipation and any uncovered bias. Methods: We mailed recruitment packets to 1,600 adult patients with upcoming appointments at Mayo Clinic (Rochester, Minn., USA) and recorded their participation status. Administrative data were used to compare characteristics across groups. We used phone interviews with 26 nonresponders and 26 refusers to collect self-reported information, including reasons for nonparticipation. Participants were asked to complete a mailed questionnaire. Results: We achieved 26.2% participation (n = 419) with 12.1% refusing (n = 193) and 61.8% nonresponse (n = 988). In multivariate analyses, sex, age, region of residence, and race/ethnicity were significantly associated with participation. The groups differed in information-seeking behaviors and research experience. Refusers more often cited privacy concerns, while nonresponders more often identified time constraints as the reason for nonparticipation. Conclusion: For genomic medicine to advance, large, representative biobanks are required. Significant associations between patient characteristics and nonresponse, as well as systematic differences between refusers and nonresponders, could introduce bias. Oversampling or recruitment changes, including heightened attention to privacy protection and participation burden, may be necessary to increase participation among less-represented groups.

State Medicaid Programs Did Not Make Use Of Prior Authorization To Promote Safer Prescribing After Rosiglitazone Warning

State Medicaid programs use preferred drug lists to help limit prescribing of high-cost drugs and, at the same time, to free providers from having to obtain prior authorization for a given prescription. We examined the impact of the Food and Drug Administrations May 2007 safety warning regarding rosiglitazone (Avandia), a diabetes drug found to raise the risk of heart attacks, on the drugs availability on state Medicaid preferred drug lists and on the prescribing of diabetes medications more generally for Medicaid beneficiaries. Nearly all state Medicaid programs covered rosiglitazone as a preferred drug, requiring no prior authorization, with minimal change after the safety warning. At the same time, the safety warning was associated with a greater-than-expected decline in rosiglitazone prescribing among states providing coverage as a preferred drug. This suggests that providers reacted to the safety warning by reducing prescriptions. However, Medicaid programs that did provide coverage of rosiglitazone as a preferred drug still exhibited prescribing rates that were three to five times greater than rates in programs that did not provide coverage without prior authorization. We conclude that state Medicaid programs missed important opportunities to promote safer, more effective prescribing in the wake of the 2007 safety warning about rosiglitazone by making full use of preferred drug lists and prior authorization programs.

The Adverse Effect of Weight Stigma on the Well-Being of Medical Students with Overweight or Obesity: Findings from a National Survey

ABSTRACTBACKGROUNDThe stigma of obesity is a common and overt social bias. Negative attitudes and derogatory humor about overweight/obese individuals are commonplace among health care providers and medical students. As such, medical school may be particularly threatening for students who are overweight or obese.OBJECTIVEThe purpose of our study was to assess the frequency that obese/overweight students report being stigmatized, the degree to which stigma is internalized, and the impact of these factors on their well-being.DESIGNWe performed cross-sectional analysis of data from the Medical Student Cognitive Habits and Growth Evaluation Study (CHANGES) survey.PARTICIPANTSA total of 4,687 first-year medical students (1,146 overweight/obese) from a stratified random sample of 49 medical schools participated in the study.MAIN MEASURESImplicit and explicit self-stigma were measured with the Implicit Association Test and Anti-Fat Attitudes Questionnaire. Overall health, anxiety, depression, fatigue, self-esteem, sense of mastery, social support, loneliness, and use of alcohol/drugs to cope with stress were measured using previously validated scales.KEY RESULTSAmong obese and overweight students, perceived stigma was associated with each measured component of well-being, including anxiety (beta coefficient [b] = 0.18; standard error [SE] = 0.03; p < 0.001) and depression (b = 0.20; SE = 0.03; p < 0.001). Among the subscales of the explicit self-stigma measure, dislike of obese people was associated with several factors, including depression (b = 0.07; SE = 0.01; p < 0.001), a lower sense of mastery (b = −0.10; SE = 0.02; p < 0.001), and greater likelihood of using drugs or alcohol to cope with stress (b = 0.05; SE = 0.01; p < 0.001). Fear of becoming fat was associated with each measured component of well-being, including lower body esteem (b = −0.25; SE = 0.01; p < 0.001) and less social support (b = −0.06; SE = 0.01; p < 0.001). Implicit self-stigma was not consistently associated with well-being factors. Compared to normal-weight/underweight peers, overweight/obese medical students had worse overall health (b = −0.33; SE = 0.03; p < 0.001) and body esteem (b = −0.70; SE = 0.02; p < 0.001), and overweight/obese female students reported less social support (b = −0.12; SE = 0.03; p < 0.001) and more loneliness (b = 0.22; SE = 0.04; p < 0.001).CONCLUSIONSPerceived and internalized weight stigma may contribute to worse well-being among overweight/obese medical students.