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1.
J Genet Couns ; 30(1): 42-50, 2021 02.
Article in English | MEDLINE | ID: mdl-33278053

ABSTRACT

The descriptor 'usual care' refers to standard or routine care. Yet, no formal definition exists. The need to define what constitutes usual care arises in clinical research. Often one arm in a trial represents usual care in comparison with a novel intervention. Accordingly, usual care in genetic counseling research appears predominantly in randomized controlled trials. Recent standards for reporting genetic counseling research call for standardization, but do not address usual care. We (1) inventoried all seven studies in the Clinical Sequencing Evidence-Generating Consortium (CSER) about how genetic counseling was conceptualized, conducted, and whether a usual care arm was involved; (2) conducted a review of published randomized control trials in genetic counseling, comparing how researchers describe usual care groups; and (3) reviewed existing professionally endorsed definitions and practice descriptions of genetic counseling. We found wide variation in the content and delivery of usual care. Descriptions frequently detailed the content of usual care, most often noting assessment of genetic risk factors, collecting family histories, and offering testing. A minority included addressing psychological concerns or the risks versus benefits of testing. Descriptions of how care was delivered were vague except for mode and type of clinician, which varied. This significant variation, beyond differences expected among subspecialties, reduces the validity and generalizability of genetic counseling research. Ideally, research reflects clinical practice so that evidence generated can be used to improve clinical outcomes. To address this objective, we propose a definition of usual care in genetic counseling research that merges common elements from the National Society of Genetic Counselors' practice definition, the Reciprocal Engagement Model, and the Accreditation Council for Genetic Counselors' practice-based competencies. Promoting consistent execution of usual care in the design of genetic counseling trials can lead to more consistency in representing clinical care and facilitate the generation of evidence to improve it.


Subject(s)
Counseling , Genetic Counseling , Accreditation , Humans
2.
MDM Policy Pract ; 5(1): 2381468319891452, 2020.
Article in English | MEDLINE | ID: mdl-31976372

ABSTRACT

Background. Recent data and policy decisions have led to the availability of lung cancer screening (LCS) for individuals who are at increased risk of developing lung cancer. In establishing implementation policies, the US Preventive Services Task Force recommended and the Centers for Medicare and Medicaid Services required that individuals who meet eligibility criteria for LCS receive a patient counseling and shared decision-making consultation prior to LCS. Methods. This study evaluated the potential of a values clarification/preference elicitation exercise and brief educational intervention to reduce decisional conflict regarding LCS. Participants (N = 210) completing a larger online survey responded to a measure of decisional conflict prior to and following administration of a conjoint survey and brief educational narrative about LCS. The conjoint survey included 22 choice sets (two of which were holdout cards), incorporating 5 attributes with 17 levels. Results. Results pertaining to changes in decisional conflict showed that participants reported statistically significantly and clinically meaningful reductions in decisional conflict following administration of the brief educational narrative and conjoint survey across the total score (Δ = 29.30; d = 1.09) and all four decisional conflict subscales: Uncertainty (Δ = 27.75; d = 0.73), Informed (Δ = 35.32; d = 1.11), Values Clarity (Δ = 31.82; d = 0.85), and Support (Δ = 18.78; d = 0.66). Discussion. While the study design precludes differentiating the effects of the brief educational narrative and the conjoint survey, data suggest that these tools offer a reasonable approach to clarifying personal beliefs and perspectives regarding LCS participation. Given the complicated nature of LCS decisions and recent policies advocating informed and shared decision-making approaches, conjoint surveys should be evaluated as one of the tools that could help individuals make choices about LCS participation.

3.
J Health Psychol ; 25(8): 1109-1117, 2020 07.
Article in English | MEDLINE | ID: mdl-29292661

ABSTRACT

The need for cognitive closure describes the extent to which a person, faced with a decision, prefers any answer in lieu of continued uncertainty. This construct may be relevant in lung cancer screening, which can both reduce and increase uncertainty. We examined whether individual differences in need for cognitive closure are associated with Veterans' completion of lung cancer screening using a self-administered survey (N = 361). We also assessed whether need for cognitive closure moderates an association between screening completion and lung cancer risk perception. Contrary to our main hypothesis, high need for cognitive closure Veterans were not more likely to complete lung cancer screening and need for cognitive closure did not have a moderating role.


Subject(s)
Cognition , Early Detection of Cancer/psychology , Individuality , Lung Neoplasms/diagnosis , Lung Neoplasms/psychology , Uncertainty , Aged , Female , Humans , Male , Risk , Surveys and Questionnaires , Veterans/psychology
4.
Health Psychol Open ; 6(1): 2055102918819163, 2019.
Article in English | MEDLINE | ID: mdl-30643640

ABSTRACT

We describe the characteristics of individuals being screened in community settings including factors influencing screening decisions and the level of information sought prior to screening. Individuals from two community-based radiology clinics (N = 27) were surveyed after screening. Screening efficacy and salience were the most important factors in screening decisions, whereas healthcare provider recommendations were rated not important. Half of participants reported no or little conversation about screening with their primary care provider, and 61.5 percent had not sought any information on screening. Individuals being screened in a community setting are unlikely to have sufficient information for an informed decision about screening.

5.
Digit Health ; 4: 2055207618771757, 2018.
Article in English | MEDLINE | ID: mdl-29942634

ABSTRACT

As the popularity and diversity of social media platforms increases so does their utility for health research. Using social media for recruitment into clinical studies and/or delivering health behavior interventions may increase reach to a broader audience. However, evidence supporting the efficacy of these approaches is limited, and key questions remain with respect to optimal benchmarks, intervention development and methodology, participant engagement, informed consent, privacy, and data management. Little methodological guidance is available to researchers interested in using social media for health research. In this Tutorial, we summarize the content of the 2017 Society for Behavioral Medicine Pre-Conference Course entitled 'Using Social Media for Research,' at which the authors presented their experiences with methodological and ethical issues relating to social media-enabled research recruitment and intervention delivery. We identify common pitfalls and provide recommendations for recruitment and intervention via social media. We also discuss the ethical and responsible conduct of research using social media for each of these purposes.

6.
Am J Manag Care ; 24(6): 272-277, 2018 06.
Article in English | MEDLINE | ID: mdl-29939501

ABSTRACT

OBJECTIVES: To describe participation rates, results, and lessons learned from a lung cancer screening (LCS) demonstration project. STUDY DESIGN: Prospective observational study at 1 of 8 centers participating in a national Veterans Health Administration LCS demonstration project. METHODS: An electronic health record (EHR) algorithm and tobacco pack-year (TPY) information prompt identified patients potentially eligible for LCS. LCS invitation was planned to consist of shared decision-making materials, an invitation letter to call the LCS manager, a reminder letter, and an outreach phone call for nonresponders. The outreach call was subsequently dropped due to time constraints on the LCS manager. Lung nodules and incidental findings on LCS low-dose computed tomography (LDCT) were recorded in templated radiology reports and tracked with EHR notes. RESULTS: Of 6133 potentially eligible patients, we identified 1388 patients with eligible TPY information: 918 were invited for LCS and 178 (19%) completed LCS. LCS completion was more likely in patients in the mailing-plus-call outreach group (phase I) compared with the mail-only group (phase II) (22% vs 9%; P <.001). Among those completing an LDCT, 61% had lung nodules requiring follow-up: 43% of the nodules were less than 4 mm in diameter, 12 patients required further diagnostic evaluation, and 2 had lung malignancies. There were 179 incidental LDCT findings in 116 patients, and 20% were clinically significant. CONCLUSIONS: Important considerations in LCS are accurate identification of eligible patients, balancing invitation approaches with resource constraints, and establishing standardized methods for tracking numerous small lung nodules and incidental findings detected by LDCT.


Subject(s)
Hospitals, Veterans , Lung Neoplasms/diagnostic imaging , Mass Screening/methods , Smokers , Tomography, X-Ray Computed , Aged , Decision Making , Electronic Health Records , Female , Humans , Male , Middle Aged , Program Evaluation , Prospective Studies , United States
7.
Psychol Health ; 33(1): 98-116, 2018 01.
Article in English | MEDLINE | ID: mdl-28488897

ABSTRACT

OBJECTIVE: Researchers have historically treated cognition and affect as separate constructs in motivating health behaviour. We present a framework and empirical evidence for complex relations between cognition and affect in predicting health behaviour. Main Outcome, Design and Results: First, affect and cognition can mediate each other's relation to health behaviour. Second, affect and cognition can moderate the other's impact. Third, context can change the interplay of affect and cognition. Fourth, affect and cognition may be indelibly fused in some psychological constructs (e.g. worry, anticipated regret and reactance). These four propositions in our framework are not mutually exclusive. CONCLUSION: Examination of the types of complex relations described here can benefit theory development, empirical testing of theories and intervention design. Doing so will advance the understanding of mechanisms involved in regulation of health behaviours and the effectiveness of interventions to change health behaviours.


Subject(s)
Affect , Cognition , Health Behavior , Humans , Models, Psychological , Motivation , Negotiating
8.
Cancer ; 123(18): 3502-3512, 2017 Sep 15.
Article in English | MEDLINE | ID: mdl-28493543

ABSTRACT

BACKGROUND: Patient, physician, and environmental factors were identified, and the authors examined the contribution of these factors to demographic and health variation in colonoscopy follow-up after a positive fecal occult blood test/fecal immunochemical test (FOBT/FIT) screening. METHODS: In total, 76,243 FOBT/FIT-positive patients were identified from 120 Veterans Health Administration (VHA) facilities between August 16, 2009 and March 20, 2011 and were followed for 6 months. Patient demographic (race/ethnicity, sex, age, marital status) and health characteristics (comorbidities), physician characteristics (training level, whether primary care provider) and behaviors (inappropriate FOBT/FIT screening), and environmental factors (geographic access, facility type) were identified from VHA administrative records. Patient behaviors (refusal, private sector colonoscopy use) were estimated with statistical text mining conducted on clinic notes, and follow-up predictors and adjusted rates were estimated using hierarchical logistic regression. RESULTS: Roughly 50% of individuals completed a colonoscopy at a VHA facility within 6 months. Age and comorbidity score were negatively associated with follow-up. Blacks were more likely to receive follow-up than whites. Environmental factors attenuated but did not fully account for these differences. Patient behaviors (refusal, private sector colonoscopy use) and physician behaviors (inappropriate screening) fully accounted for the small reverse race disparity and attenuated variation by age and comorbidity score. Patient behaviors (refusal and private sector colonoscopy use) contributed more to variation in follow-up rates than physician behaviors (inappropriate screening). CONCLUSIONS: In the VHA, blacks are more likely to receive colonoscopy follow-up for positive FOBT/FIT results than whites, and follow-up rates markedly decline with advancing age and comorbidity burden. Patient and physician behaviors explain race variation in follow-up rates and contribute to variation by age and comorbidity burden. Cancer 2017;123:3502-12. Published 2017. This article is a US Government work and is in the public domain in the USA.


Subject(s)
Colonoscopy/statistics & numerical data , Colorectal Neoplasms/diagnosis , Early Detection of Cancer/methods , Health Behavior/ethnology , Occult Blood , Age Factors , Aged , Analysis of Variance , Colonoscopy/methods , Colorectal Neoplasms/prevention & control , Databases, Factual , Environment , Female , Follow-Up Studies , Hospitals, Veterans , Humans , Male , Middle Aged , Multivariate Analysis , Physician-Patient Relations , Retrospective Studies , Risk Assessment , Sex Factors , Survival Analysis , United States
9.
Lung Cancer ; 104: 38-44, 2017 02.
Article in English | MEDLINE | ID: mdl-28212998

ABSTRACT

INTRODUCTION: The National Lung Screening Trial recently reported that annual low-dose computed tomography screening is associated with decreased lung cancer mortality in high-risk smokers. This study sought to identify the factors patients consider important in making lung cancer screening (LCS) decisions, and explore variations by patient characteristics and LCS participation. MATERIAL AND METHODS: This observational survey study evaluated the Minneapolis VA LCS Clinical Demonstration Project in which LCS-eligible Veterans (N=1388) were randomized to either Direct LCS Invitation (mailed with decision aid, N=926) or Usual Care (provider referral, N=462). We surveyed participants three months post-randomization (response rate 44%) and report the proportion of respondents rating eight decision-making factors (benefits, harms, and neutral factors) as important by condition, patient characteristics, and LCS completion. RESULTS: Overall, the most important factor was personal risk of lung cancer and the least important factor was health risks from LCS. The reported importance varied by patient characteristics, including smoking status, health status, and education level. Overall, the potential harms of LCS were reported less important than the benefits or the neutral decision-making factors. Exposure to Direct LCS Invitation (with decision aid) increased Veterans' attention to specific decision-making factors; compared to Usual Care respondents, a larger proportion of Direct LCS Invitation respondents rated the chance of false-positive results, LCS knowledge, LCS convenience, and anxiety as important. Those completing LCS considered screening harms less important, with the exception of incidental findings. CONCLUSION: Decision tools influence Veterans' perceptions about LCS decision-making factors. As the factors important to LCS decision making vary by patient characteristics, targeted materials for specific subgroups may be warranted. Attention should be paid to how LCS incidental findings are communicated.


Subject(s)
Decision Making , Early Detection of Cancer/methods , Lung Neoplasms/diagnostic imaging , Veterans Health/education , Aged , Attitude to Health , Decision Support Techniques , Female , Humans , Lung Neoplasms/epidemiology , Lung Neoplasms/psychology , Male , Middle Aged , Mortality , Perception , Smoking/mortality , Smoking Prevention , Tomography, X-Ray Computed/methods , Veterans Health/standards
10.
J Behav Med ; 40(1): 52-68, 2017 Feb.
Article in English | MEDLINE | ID: mdl-27566316

ABSTRACT

Informed and shared decision making are critical aspects of patient-centered care, which has contributed to an emphasis on decision support interventions to promote good medical decision making. However, researchers and healthcare providers have not reached a consensus on what defines a good decision, nor how to evaluate it. This position paper, informed by conference sessions featuring diverse stakeholders held at the 2015 Society of Behavioral Medicine and Society for Medical Decision Making annual meetings, describes key concepts that influence the decision making process itself and that may change what it means to make a good decision: interpersonal factors, structural constraints, affective influences, and values clarification methods. This paper also proposes specific research questions within each of these priority areas, with the goal of moving medical decision making research to a more comprehensive definition of a good medical decision, and enhancing the ability to measure and improve the decision making process.


Subject(s)
Consensus , Decision Making , Patient-Centered Care/organization & administration , Guidelines as Topic , Health Personnel , Humans , Patient Participation
11.
Health Expect ; 20(4): 779-787, 2017 08.
Article in English | MEDLINE | ID: mdl-27807905

ABSTRACT

BACKGROUND: In 2012, the United States Preventive Services Task Force (USPSTF) recommended against prostate-specific antigen (PSA)-based prostate cancer screening for all men. OBJECTIVE: To inform educational materials addressing patient questions and concerns about the 2012 USPSTF guidelines, we sought to: (i) characterize patient perceptions about prostate cancer screening benefits, harms and recommendations against screening, and (ii) compare perceptions across race, age and PSA level subgroups. METHODS: We conducted qualitative interviews with a sample of 26 men from the Minneapolis Veterans Affairs Health Care System, stratified by race (African American, other), age (50-69, 70-84) and PSA level (documented PSA level ≥4 in Veterans Health Administration electronic medical records vs no such documentation). We used an inductive approach informed by grounded theory to analyse transcribed interviews. RESULTS: Most men in all subgroups expressed misperceptions about the benefits of prostate cancer screening and had difficulty identifying harms associated with screening. In all subgroups, reactions to recommendations against screening ranged from unconditionally receptive to highly resistant. Some men in every subgroup initially resistant to the idea said they would accept a recommendation to discontinue screening from their provider. CONCLUSIONS: Given the similarity of perceptions and reactions across subgroups, materials targeted by race, age and PSA level may not be necessary. Efforts to inform decision making about prostate cancer screening should address misperceptions about benefits and lack of awareness of harms. Provider perspectives and recommendations may play a pivotal role in shaping patient reactions to new guidelines.


Subject(s)
Advisory Committees , Demography/statistics & numerical data , Early Detection of Cancer/methods , Prostate-Specific Antigen/analysis , Prostatic Neoplasms/diagnosis , Aged , Aged, 80 and over , Humans , Male , Middle Aged , Patient Education as Topic , Practice Guidelines as Topic , Qualitative Research , United States
12.
Transl Behav Med ; 6(4): 669-671, 2016 12.
Article in English | MEDLINE | ID: mdl-27646803

ABSTRACT

The Society of Behavioral Medicine (SBM) supports the United States Preventive Services Task Force (USPSTF) recommendation of low-dose computed tomography (LDCT) screening of the chest for eligible populations to reduce lung cancer mortality. Consistent with efforts to translate research findings into real-world settings, SBM encourages health-care providers and health-care systems to (1) integrate evidence-based tobacco treatment as an essential component of LDCT-based lung cancer screening, (2) examine the structural barriers that may impact screening uptake, and (3) incorporate shared decision-making as a clinical platform to facilitate consultations and engagement with individuals at high risk for lung cancer about the potential benefits and harms associated with participation in a lung cancer screening program. We advise policy makers and legislators to support screening in high-risk populations by continuing to (1) expand access to high quality LDCT-based screening among underserved high-risk populations, (2) enhance cost-effectiveness by integrating evidence-based tobacco treatments into screening in high-risk populations, and (3) increase funding for research that explores implementation science and increased public awareness and access of diverse populations to participate in clinical and translational research.


Subject(s)
Behavioral Medicine , Lung Neoplasms/diagnostic imaging , Mass Screening/economics , Tomography, X-Ray Computed/methods , Aged , Aged, 80 and over , Awareness , Cost-Benefit Analysis , Decision Making , Female , Health Personnel , Humans , Male , Middle Aged , Smoking Cessation/methods , Societies , United States
13.
BMC Med Inform Decis Mak ; 15: 50, 2015 Jun 27.
Article in English | MEDLINE | ID: mdl-26123051

ABSTRACT

BACKGROUND: Parents are increasingly faced with decisions about optional newborn bloodspot screening (NBS) despite no consistent policy for communicating information about such testing. We examined whether framing optional NBS alongside mandatory NBS influenced intention to participate in optional NBS. METHODS: For this Internet-administered study, 2,991 adults read a hypothetical vignette in which optional NBS for Duchenne muscular dystrophy (DMD) was either presented by itself (in isolation), alongside a description including the total number of mandatory NBS tests ("bundled" mandatory context), or alongside a listing of each mandatory NBS test ("unbundled" mandatory context). We assessed associations with participants' intended participation using ordered logistic regression models, and associations with attitudes towards optional DMD NBS and subjective norms using Analysis of Variance. RESULTS: Participants were more likely to choose optional DMD NBS if they also read information about mandatory NBS (either bundled or unbundled) versus when DMD NBS was presented in isolation. Participants who read about optional DMD NBS in isolation also reported such testing to be less important and that they would worry more about the results than those who also saw mandatory NBS information. CONCLUSIONS: Future NBS programs should pay attention to the framing of optional testing communication, as it influences parental behavior. Predictors of NBS uptake will become increasingly important as NBS programs continue expanding.


Subject(s)
Decision Making , Genetic Testing/standards , Health Communication/standards , Neonatal Screening/standards , Parents , Adult , Humans , Infant, Newborn , Internet , Muscular Dystrophy, Duchenne/diagnosis , Random Allocation
14.
Cancer Epidemiol Biomarkers Prev ; 24(2): 422-34, 2015 Feb.
Article in English | MEDLINE | ID: mdl-25471345

ABSTRACT

BACKGROUND: This study assessed the contribution of organizational structures and processes identified from facility surveys to follow-up for positive fecal occult blood tests [FOBT-positive (FOBT(+))]. METHODS: We identified 74,104 patients with FOBT(+) results from 98 Veterans Health Administration (VHA) facilities between August 16, 2009 and March 20, 2011, and followed them until September 30, 2011, for completion of colonoscopy. We identified patient characteristics from VHA administrative records, and organizational factors from facility surveys completed by primary care and gastroenterology chiefs. We estimated predictors of colonoscopy completion within 60 days and six months using hierarchical logistic regression models. RESULTS: Thirty percent of patients with FOBT(+) results received colonoscopy within 60 days and 49% within six months. Having gastroenterology or laboratory staff notify gastroenterology providers directly about FOBT(+) cases was a significant predictor of 60-day [odds ratio (OR), 1.85; P = 0.01] and six-month follow-up (OR, 1.25; P = 0.008). Additional predictors of 60-day follow-up included adequacy of colonoscopy appointment availability (OR, 1.43; P = 0.01) and frequent individual feedback to primary care providers about FOBT(+) referral timeliness (OR, 1.79; P = 0.04). Additional predictors of six-month follow-up included using guideline-concordant surveillance intervals for low-risk adenomas (OR, 1.57; P = 0.01) and using group appointments and combined verbal-written methods for colonoscopy preparation instruction (OR, 1.48; P = 0.0001). CONCLUSION: Directly notifying gastroenterology providers about FOBT(+) results, using guideline-concordant adenoma surveillance intervals, and using colonoscopy preparations instruction methods that provide both verbal and written information may increase overall follow-up rates. Enhancing follow-up within 60 days may require increased colonoscopy capacity and feedback to primary care providers. IMPACT: These findings may inform organizational-level interventions to improve FOBT(+) follow-up.


Subject(s)
Colonic Neoplasms/diagnosis , Colonoscopy/statistics & numerical data , Early Detection of Cancer/methods , Occult Blood , Adult , Aged , Aged, 80 and over , Colonic Neoplasms/prevention & control , Hospitals, Veterans , Humans , Middle Aged , Veterans , Veterans Health , Young Adult
15.
Oncol Nurs Forum ; 41(1): 13-20, 2014 Jan 01.
Article in English | MEDLINE | ID: mdl-24368235

ABSTRACT

PURPOSE/OBJECTIVES: To characterize the perspectives of partners (husbands or significant others) of patients with breast cancer in the treatment decision-making process and to evaluate racial and ethnic differences in decision outcomes. DESIGN: A cross-sectional survey. SETTING: Los Angeles, CA, and Detroit, MI. SAMPLE: 517 partners of a population-based sample of patients with breast cancer four years post-treatment. METHODS: A self-administered mailed questionnaire. Chi-square tests and logistic regression were used to assess associations between race and ethnicity and decision outcomes. MAIN RESEARCH VARIABLES: Decision regret and three elements of the decision process: information received, actual involvement, and desired involvement. FINDINGS: Most partners reported receiving sufficient information (77%), being involved in treatment decisions (74%), and having sufficient involvement (73%). Less-acculturated Hispanic partners were more likely than their Caucasian counterparts to report high decision regret (45% versus 14%, p<0.001). Factors significantly associated (p<0.05) with high decision regret were insufficient receipt of treatment information, low involvement in decision making, and a desire for more involvement. CONCLUSIONS: Partners were generally positive regarding their perspectives about participating in the breast cancer treatment decision-making process. However, less acculturated Hispanic partners were most vulnerable to decision regret. In addition, high decision regret was associated with modifiable elements of the decision-making process. IMPLICATIONS FOR NURSING: Attention should be paid to ensuring racial and ethnic minority partners are sufficiently involved in breast cancer treatment decisions and receive decision support.


Subject(s)
Breast Neoplasms/ethnology , Decision Making , Emotions , Patient Participation , Sexual Partners/psychology , Acculturation , Black or African American/psychology , Attitude to Health , Breast Neoplasms/psychology , Breast Neoplasms/therapy , Chemotherapy, Adjuvant/psychology , Cross-Sectional Studies , Female , Health Care Surveys , Hispanic or Latino/psychology , Humans , Indians, North American/psychology , Informed Consent , Los Angeles , Male , Mastectomy/methods , Mastectomy/psychology , Michigan , Patient Education as Topic , Patient Participation/psychology , Radiotherapy, Adjuvant/psychology , SEER Program , Surveys and Questionnaires , White People/psychology
16.
Ann Surg Oncol ; 20(1): 7-14, 2013 Jan.
Article in English | MEDLINE | ID: mdl-23054105

ABSTRACT

BACKGROUND AND PURPOSE: While variation in breast cancer quality indicators has been studied, to date there have been no studies examining the degree of surgeon-level variation in patient-reported outcomes. The purpose of this study is to examine surgeon-level variation in patient appraisals of their breast cancer care experiences. METHODS: Survey responses and clinical data from breast cancer patients reported to Detroit and Los Angeles Surveillance, Epidemiology and End Results registries from 6/2005 to 2/2007 were merged with attending surgeon surveys (1,780 patients, 291 surgeons). Primary outcomes were patient reports of access to care, care coordination, and decision satisfaction. Random-effects models examined variation due to individual surgeons for these three outcomes. RESULTS: Mean values on each patient-reported outcome scale were high. The amount of variation attributable to individual surgeons in the unconditional models was low to modest: 5.4% for access to care, 3.3% for care coordination, and 7.5% for decision satisfaction. Few factors were independently associated with patient reports of better access to or coordination of care, but less-acculturated Latina patients had lower decision satisfaction. CONCLUSIONS: Patients reported generally positive experiences with their breast cancer treatment, though we found disparities in decision satisfaction. Individual surgeons did not substantively explain the variation in any of the patient-reported outcomes.


Subject(s)
Breast Neoplasms/surgery , Critical Pathways , Patient Satisfaction , Black or African American/statistics & numerical data , Aged , Appointments and Schedules , Clinical Competence , Female , Health Services Accessibility , Hispanic or Latino/statistics & numerical data , Humans , Interdisciplinary Communication , Male , Middle Aged , Patient Participation , Specialization , Surveys and Questionnaires , White People/statistics & numerical data , Young Adult
17.
Med Decis Making ; 32(4): 545-53, 2012.
Article in English | MEDLINE | ID: mdl-22472914

ABSTRACT

BACKGROUND: Electronic personal health records offer a promising way to communicate medical test results to patients. We compared the usability of tables and horizontal bar graphs for presenting medical test results electronically. METHODS: We conducted experiments with a convenience sample of 106 community-dwelling adults. In the first experiment, participants viewed either table or bar graph formats (between subjects) that presented medical test results with normal and abnormal findings. In a second experiment, participants viewed table and bar graph formats (within subjects) that presented test results with normal, borderline, and abnormal findings. RESULTS: Participants required less viewing time when using bar graphs rather than tables. This overall difference was due to superior performance of bar graphs in vignettes with many test results. Bar graphs and tables performed equally well with regard to recall accuracy and understanding. In terms of ease of use, participants did not prefer bar graphs to tables when they viewed only one format. When participants viewed both formats, those with experience with bar graphs preferred bar graphs, and those with experience with tables found bar graphs equally easy to use. Preference for bar graphs was strongest when viewing tests with borderline results. CONCLUSIONS: Compared to horizontal bar graphs, tables required more time and experience to achieve the same results, suggesting that tables can be a more burdensome format to use. The current practice of presenting medical test results in a tabular format merits reconsideration.


Subject(s)
Audiovisual Aids , Communication , Consumer Health Information/methods , Electronic Health Records/organization & administration , Adult , Aged , Aged, 80 and over , Blood Pressure , Body Mass Index , Cholesterol/blood , Diagnostic Techniques and Procedures , Female , Humans , Male , Middle Aged , Residence Characteristics , Statistics as Topic/methods , Time Factors
18.
Patient Educ Couns ; 81 Suppl: S34-40, 2010 Dec.
Article in English | MEDLINE | ID: mdl-21074963

ABSTRACT

OBJECTIVE: To identify factors associated with perceptions of care coordination in a diverse sample of breast cancer patients. METHODS: Breast cancer patients reported to the metropolitan SEER registries of Detroit or Los Angeles from 6/05 to 2/07 were surveyed after diagnosis (N=2268, RR=72.4%). Outcomes were two dichotomous measures reflecting patient appraisal of care coordination during their treatment experience. Primary independent variables were race/ethnicity (white, African American, Latina-high acculturated, Latina-low acculturated) and health literacy (low, moderate, high). Logistic regression was used to evaluate factors associated with both measures of care coordination. RESULTS: 2148 subjects were included in the analytic dataset. 16.4% of women perceived low care coordination and 12.5% reported low satisfaction. Race/ethnicity was not significantly associated with care coordination. Women with low subjective health literacy were 3-4 times as likely as those with high health literacy to perceive low care coordination and low satisfaction with care coordination (OR=3.88; 95% CI: 2.78-5.41; OR=3.19 95% CI: 2.25-4.52, respectively). CONCLUSIONS: Many breast cancer patients positively appraised their care coordination, but patients with low health literacy perceived low care coordination. PRACTICE IMPLICATIONS: Providers should be aware of the health literacy deficits that may contribute to their patients' attitudes towards their breast cancer care coordination.


Subject(s)
Breast Neoplasms/ethnology , Breast Neoplasms/therapy , Delivery of Health Care/organization & administration , Ethnicity/statistics & numerical data , Health Literacy , Quality of Health Care , Adult , Aged , Breast Neoplasms/diagnosis , Continuity of Patient Care , Female , Humans , Middle Aged , Outcome and Process Assessment, Health Care , Patient Satisfaction , SEER Program , Socioeconomic Factors , Surveys and Questionnaires , Young Adult
19.
Health Educ Behav ; 37(5): 737-52, 2010 Oct.
Article in English | MEDLINE | ID: mdl-20930135

ABSTRACT

Research has led to greater understanding of what is needed to create and sustain well-functioning public health partnerships. However, a partnership's ability to foster an environment that encourages broad member involvement in discussions, decision making, and activities has received scant empirical attention. This study examined the relationship between partnership members' perceptions of how well leadership and management facilitated their involvement, and their satisfaction with their role and influence within the partnership. Data came from 60 individuals who participated in two waves of a quantitative process evaluation of six southern interorganizational partnerships, formed as part of a national pilot project to increase cervical and breast cancer screening rates. Results suggested that environments fostering broad partner involvement were associated with measures of member satisfaction, controlling for other partnership characteristics. Findings indicated that facilitation of member involvement deserves increased consideration from researchers and practitioners as an indicator of the quality of partnership functioning.


Subject(s)
Interinstitutional Relations , Leadership , Public Health Administration/methods , American Cancer Society , Breast Neoplasms/diagnosis , Centers for Disease Control and Prevention, U.S. , Cooperative Behavior , Early Detection of Cancer/statistics & numerical data , Female , Humans , National Cancer Institute (U.S.) , United States , United States Department of Agriculture , Uterine Cervical Neoplasms/diagnosis
20.
Med Decis Making ; 29(2): 157-66, 2009.
Article in English | MEDLINE | ID: mdl-19050227

ABSTRACT

BACKGROUND: As new genomic technology expands the number of medical tests available to physicians and patients, identifying gaps in our understanding of how best to communicate risk is increasingly important. We examined how health literacy informs breast cancer survivors' understanding of and meaning assigned to recurrence risks yielded by genomic tests. METHODS: Study participants were posttreatment female breast cancer survivors (N =163) recruited at a university breast cancer clinic. We assessed their health literacy (using REALM) and their interpretation of hypothetical recurrence risk results from a genomic test, presented in several verbal and numerical formats. Analyses controlled for women's objective recurrence risk, age, income, and race. RESULTS: Women with lower health literacy gave higher mean estimates of recurrence risk for a hypothetical group of women with early-stage breast cancer than did women with higher health literacy (52% v. 30%, P < 0:001). Women with lower health literacy also gave more variable estimates in this and several other tasks. When making chemotherapy decisions using risks presented in verbal formats, decisions by women with lower health literacy were less sensitive to the difference between low and high recurrence risk. Ease of understanding of risk formats differed by health literacy. CONCLUSIONS: Health literacy affected the meanings women assigned to recurrence risk when presented in certain formats. The greater variability in responding by women with lower health literacy supports the hypothesis that they have less precise mental representations of risk, but more research is needed to rule out other possible explanations.


Subject(s)
Breast Neoplasms/genetics , Genomics , Health Knowledge, Attitudes, Practice , Neoplasm Recurrence, Local/genetics , Adult , Aged , Aged, 80 and over , Communication , Decision Making , Female , Genetic Predisposition to Disease , Humans , Middle Aged , Neoplasms/genetics , Risk Assessment , Survivors
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