scholarly journals Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy

2021 ◽  
Vol 6 (2) ◽  
pp. 238146832110332
Author(s):  
Christine M. Gunn ◽  
Ariel Maschke ◽  
Michael K. Paasche-Orlow ◽  
Ashley J. Housten ◽  
Nancy R. Kressin ◽  
...  

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs. [Box: see text]

2020 ◽  
Vol 35 (9) ◽  
pp. 2553-2559
Author(s):  
Emily Nachtigal ◽  
Noelle K. LoConte ◽  
Sarah Kerch ◽  
Xiao Zhang ◽  
Amanda Parkes

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2340-2340 ◽  
Author(s):  
Susan E Creary ◽  
Ismahan Adan ◽  
Joseph R Stanek ◽  
Sarah O'Brien ◽  
Deena J Chisolm ◽  
...  

Abstract Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to caregivers. Interventions that increase caregivers' SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved caregivers' SCT knowledge and to assess caregivers' satisfaction with their SCT education. Methods Nationwide Children's Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course. From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores <75% were considered to have low knowledge. Immediately after receiving education, caregivers repeated the SCTKA and provided feedback about the session. Assessments were not available to the educator during the session. The Wilcoxon Signed-Rank test was used to compare SCTKA scores pre- and post-education. Mann-Whitney tests were used to compare NVS and pre-SCTKA scores between those with high and low SCT knowledge after education. Results We recruited 114/374 eligible caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many caregivers (52.2%) had NVS scores <4, but most (94.7%) reported the education was easy to understand, their questions were answered (99.1%), and they do intend to inform their child of their SCT status (99.1%). Caregivers' median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p <0.0001). Only 38.1% of caregivers had high SCT knowledge pre-education but most (90.3%) achieved high knowledge with education. Caregivers with low SCT knowledge after education had significantly lower NVS scores (median=1, p=0.0286) and baseline SCTKA scores (median=50%, p=0.0032) compared to those with high SCT knowledge after education (NVS=3.5, baseline SCTKA median=62.5%). Discussion Our study suggests that caregivers' baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these caregivers may have lower baseline SCT knowledge and health literacy. Assessing caregivers' health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all caregivers, if caregivers' SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 1550-1550
Author(s):  
Anne Hudson Blaes ◽  
Rachel Isaksson Vogel ◽  
Nancy Raymond ◽  
Kristine Talley ◽  
Alicia Allen ◽  
...  

1550 Background: Little literature exists on primary care providers’ knowledge and preferences towards breast cancer screening for high-risk women. While guidelines recommend MRI and mammography, it is unclear how frequently these recommendations are used. Methods: This web-based survey of providers licensed to practice in Minnesota was conducted. This analysis focuses on breast cancer screening practices for high-risk women. Data were summarized using descriptive statistics; professional characteristic comparisons were conducted using Chi-squared tests. Results: 805 of 10,392 (8%) invitees completed the survey. 72.2% were female. 43.9% were physicians (20.8% internists, 71.7% family medicine, 6.3% gynecology), 11.4% physician assistants (PAs), 44.8% advanced practice registered nurses (APRNs). 84.8% were in community practice, 38% > 20 years of experience and 27.1% < 10 years. When asked how effective screening was for reducing cancer mortality in high risk women, mammography was thought to be very effective (48.8%) or effective (46.8%) in women ages 40-49 years, for women ages 50+ years, 60.8% and 35.7%, respectively. 62.4% thought breast MRI was very effective in reducing cancer mortality in high risk women. There was no difference in breast MRI recommendation based on professional background, experience or practice setting. Female practitioners, less experience, and those working in gynecology or women’s health were more likely to recommend breast MRI. A case vignette for high risk screening cancer survivors is provided (Table). Conclusions: Most primary care providers believe mammography is helpful in women at high risk for developing breast cancer. Less than half of practitioners, however, are following guideline specific recommendations of both mammography and MRI for breast cancer screening in high-risk patients. [Table: see text]


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6550-6550 ◽  
Author(s):  
Craig Evan Pollack ◽  
Archana Radhakrishnan ◽  
Andrew M Parker ◽  
Kala Visvanathan ◽  
Sarah A Nowak

6550 Background: Physicians’ prior experiences caring for patients with breast cancer along with experiences in their social networks including family members and friends may be a key and understudied driver of recommendations for cancer screening. Methods: The Breast Cancer Social Networks study (CanSNET) is a national, mailed survey of 2,000 primary care providers (PCPs) randomly selected from the American Medical Association Masterfile. PCPs were asked to provide detailed characteristics on up to 2 women they know who have been diagnosed with breast cancer and “whose cancer, broadly speaking, had the greatest impact” on them, including friends, family members and patients. Each woman was categorized as being diagnosed (a) through screening with a good prognosis, (b) not through screening with a good prognosis, (c) through screening with a poor prognosis or (d) not through screening with a poor prognosis. We used a logistic regression model to assess the association between the network member and recommendations for routine screening mammograms to average-risk women ages 75+, adjusting for provider and practice characteristics. Results: Overall 871 physicians responded to the survey yielding an adjusted response rate of 52.3% (out of 1665 eligible). We found that 67% of physicians recommended screening for women 75+. The sample reported on 762 patients, 378 family members and 476 other network members who had been diagnosed with breast cancer. Ten percent of patients and 25.1% of family members reported on died of their disease. In adjusted models, we found that physicians who reported on family members who did not receive a mammogram and had a poor prognosis were significantly more likely to recommend screening compared to those who did not (Odds Ratio 1.22, 95% Confidence Interval 1.03, 1.43). Conclusions: Physicians’ experiences with their social networks was linked to their breast cancer screening recommendations, underscoring the potential for information that is learned from social networks to differ from clinical guidelines and highlighting the need to address a broad array of influences in trying to reduce potential over-screening in cancer.


2018 ◽  
Vol 107 ◽  
pp. 90-102 ◽  
Author(s):  
Archana Radhakrishnan ◽  
Sarah A. Nowak ◽  
Andrew M. Parker ◽  
Kala Visvanathan ◽  
Craig E. Pollack

Author(s):  
Nathaniel Hendrix ◽  
Brett Hauber ◽  
Christoph I Lee ◽  
Aasthaa Bansal ◽  
David L Veenstra

Abstract Background Artificial intelligence (AI) is increasingly being proposed for use in medicine, including breast cancer screening (BCS). Little is known, however, about referring primary care providers’ (PCPs’) preferences for this technology. Methods We identified the most important attributes of AI BCS for ordering PCPs using qualitative interviews: sensitivity, specificity, radiologist involvement, understandability of AI decision-making, supporting evidence, and diversity of training data. We invited US-based PCPs to participate in an internet-based experiment designed to force participants to trade off among the attributes of hypothetical AI BCS products. Responses were analyzed with random parameters logit and latent class models to assess how different attributes affect the choice to recommend AI-enhanced screening. Results Ninety-one PCPs participated. Sensitivity was most important, and most PCPs viewed radiologist participation in mammography interpretation as important. Other important attributes were specificity, understandability of AI decision-making, and diversity of data. We identified 3 classes of respondents: “Sensitivity First” (41%) found sensitivity to be more than twice as important as other attributes; “Against AI Autonomy” (24%) wanted radiologists to confirm every image; “Uncertain Trade-Offs” (35%) viewed most attributes as having similar importance. A majority (76%) accepted the use of AI in a “triage” role that would allow it to filter out likely negatives without radiologist confirmation. Conclusions and Relevance Sensitivity was the most important attribute overall, but other key attributes should be addressed to produce clinically acceptable products. We also found that most PCPs accept the use of AI to make determinations about likely negative mammograms without radiologist confirmation.


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