Voices of Women With Lived Experience of Substance Use During Pregnancy: A Qualitative Study of Motivators and Barriers to Recruitment and Retention in Research.

Despite concerns about negative neurocognitive effects of in utero substance exposure on child and brain development, research in this area is limited. This study gathered perspectives of persons with lived experience of substance use (eg, alcohol, prescription and illicit opioids, and other illicit substances) during a previous pregnancy to determine facilitators and barriers to research engagement in this vulnerable population. We conducted structured, in-depth, individual interviews and 2 focus groups of adult persons with lived experience of substance use during a previous pregnancy. Questions were developed by clinical, research, bioethics, and legal experts, with input from diverse stakeholders. They inquired about facilitators and barriers to research recruitment and retention, especially in long-term studies, with attention to bio-sample and neuroimaging data collection and legal issues. Interviews and focus groups were audio-recorded, transcribed, and analyzed using inductive coding qualitative analysis methods. Ten participants completed in-depth interviews and 7 participated in focus groups. Three main themes emerged as potential barriers to research engagement: shame of using drugs while pregnant, fear of punitive action, and mistrust of health care and research professionals. Facilitative factors included trustworthiness, compassion, and a nonjudgmental attitude among research personnel. Inclusion of gender-concordant recovery peer support specialists as research team members was the most frequently identified facilitator important for helping participants reduce fears and bolster trust in research personnel. In this qualitative study, persons with lived experience of substance use during a previous pregnancy identified factors critical for engaging this population in research, emphasizing the involvement of peer support specialists as research team members.

Patient Preferences for Diagnostic Imaging: CTA vs MRA When Diagnosing Pulmonary Embolism.

OBJECTIVE: To identify preferences regarding choice of diagnostic imaging (computed tomographic angiography [CTA] vs magnetic resonance angiography [MRA]) for the evaluation of pulmonary embolism. METHODS: We conducted 4 focus group discussions with residents of 2 Wisconsin cities. Community members ≥18 years old were recruited via telephone using a commercially available telephone database. The discussions were audio recorded and professionally transcribed. Three investigators (a research specialist, emergency physician, and qualitative methodologist) independently analyzed these transcripts using inductive thematic coding to identify the overarching themes and underlying concepts. Intercoder discrepancies were resolved through consensus discussion by the reviewers. RESULTS: Focus groups were held over a 3-month period and included 29 participants (16 female). Ages were well represented: 18-30 (n = 7), 31-40 (n = 8), 41-55 (n = 6), and 56+ (n = 8) years old. Analysis revealed 3 central themes: time, risk, and experience. Participants who preferred CTA commonly cited the need for immediate results in the emergency department. When nonemergent scenarios were discussed, the option to undergo MRA was considered more strongly; participants weighed additional details like radiation and diagnostic accuracy. Regarding risks, discussants expressed concerns from multiple sources, including radiation and intravenous contrast. However, understanding of this risk varied across the groups. Prior experience with medical imaging-both personal and indirect experiences-carried considerable weight. CONCLUSIONS: Preferences regarding imaging choice in the diagnosis of pulmonary embolism were mixed, often reliant on vicarious experiences and an exaggerated notion of the difference in timing of imaging results. Participants frequently used incomplete or even incorrect information as the basis for decision-making.

Core Elements of Shared Decision-making for Women Considering Breast Cancer Screening: Results of a Modified Delphi Survey.

BACKGROUND: The United States Preventive Services Task Force recommends individualized breast cancer screening for average-risk women before age 50, advised by risk assessment and shared decision-making (SDM). However, the foundational principles of this recommendation that would inform decision support tools for patients and primary care physicians at the point of care have not been codified. Determining the core elements of SDM for breast cancer screening as valued by patients and primary care providers (PCPs) is necessary for implementing effective SDM tools. The aim of this study is to affirm core elements of SDM in the context of clinical interactions, through a Delphi consensus process. METHODS: A Delphi was conducted with 30 participants (10 women aged 40-49, 10 PCPs, and 10 healthcare decision scientists), to codify core elements of breast cancer screening SDM. The criterion for establishing consensus was a threshold of 80% agreement. The Delphi concluded with an 83% response rate. RESULTS: Of 48 items fielded, 44 met the threshold on the high-importance end of the response scale and were accepted as core elements. Core elements across three thematic categories-information delivery and patient education, interpersonal clinician-patient communication, and framework of the decision-received panelists' support in nearly equal measure. Panelists unanimously agreed that SDM should include provision of clearly understandable information, including that of personal breast cancer risk factors, and benefits and harms of mammography screening, and that PCPs should convey they are listening, knowledgeable, and demonstrate cultural sensitivity. DISCUSSION: This research codifies the core elements of SDM for mammography in women 40-49, augmenting the evidence to inform discussions between patients and physicians. These core elements of SDM have the potential to operationalize SDM for breast cancer screening in an effort to improve public health outcomes.

Family and transplant professionals' views of organ recovery before circulatory death for imminently dying patients: A qualitative study using semistructured interviews and focus groups.

Donation before circulatory death for imminently dying patients has been proposed to address organ scarcity and harms of nondonation. To characterize stakeholder attitudes about organ recovery before circulatory death we conducted semistructured interviews with family members (N = 15) who had experienced a loved one's unsuccessful donation after circulatory death and focus groups with professional stakeholders (surgeons, anesthesiologists, critical care specialists, palliative care specialists, organ procurement personnel, and policymakers, N = 46). We then used qualitative content analysis to characterize these perspectives. Professional stakeholders believed that donation of all organs before circulatory death was unacceptable, morally repulsive, and equivalent to murder; consent for such a procedure would be impermissible. Respondents feared the social costs related to recovery before death were too high. Although beliefs about recovery of all organs were widely shared, some professional stakeholders could accommodate removal of a single kidney before circulatory death. In contrast, family members were typically accepting of donation before circulatory death for a single kidney, and many believed recovery of all organs was permissible because they believed the cause of death was the donor's injury, not organ procurement. These findings suggest that definitions of death and precise rules around organ donation are critical for professional stakeholders, whereas donor families find less relevance in these constructs for determining the acceptability of organ donation. Donation of a single kidney before circulatory death warrants future exploration.

Harms of unsuccessful donation after circulatory death: An exploratory study.

While donation after circulatory death (DCD) has expanded options for organ donation, many who wish to donate are still unable to do so. We conducted face-to-face interviews with family members (N = 15) who had direct experience with unsuccessful DCD and 5 focus groups with professionals involved in the donation process. We used qualitative content analysis to characterize the harms of nondonation as perceived by participants. Participants reported a broad spectrum of harms affecting organ recipients, donors, and donor families. Harms included waste of precious life-giving organs and hospital resources, inability to honor the donor's memory and character, and impaired ability for families to make sense of tragedy and cope with loss. Donor families empathized with the initial hope and ultimate despair of potential recipients who must continue their wait on the transplant list. Focus group members reinforced these findings and highlighted the struggle of families to navigate the uncertainty regarding the timing of death during the donation process. While families reported significant harm, many appreciated the donation attempt. These findings highlight the importance of organ donation to donor families and the difficult experiences associated with current processes that could inform development of alternative donation strategies.

How participants report their health status: cognitive interviews of self-rated health across race/ethnicity, gender, age, and educational attainment.

BACKGROUND: Self-rated health (SRH) is widely used to measure subjective health. Yet it is unclear what underlies health ratings, with implications for understanding the validity of SRH overall and across sociodemographic characteristics. We analyze participants' explanations of how they formulated their SRH answer in addition to which health factors they considered and examine group differences in these processes. METHODS: Cognitive interviews were conducted with 64 participants in a convenience quota sample crossing dimensions of race/ethnicity (white, Latino, black, American Indian), gender, age, and education. Participants rated their health then described their thoughts when answering SRH. We coded participants' answers in an inductive, iterative, and systematic process from interview transcripts, developing analytic categories (i.e., themes) and subdimensions within. We examined whether the presence of each dimension of an analytic category varied across sociodemographic groups. RESULTS: Our qualitative analysis led to the identification and classification of various subdimensions of the following analytic categories: types of health factors mentioned, valence of health factors, temporality of health factors, conditional health statements, and descriptions and definitions of health. We found differences across groups in some types of health factors mentioned-corresponding, conflicting, or novel with respect to prior research. Furthermore, we also documented various processes through which respondents integrate seemingly disparate health factors to formulate an answer through valence and conditional health statements. Finally, we found some evidence of sociodemographic group differences with respect to types of health factors mentioned, valence of health factors, and conditional health statements, highlighting avenues for future research. CONCLUSION: This study provides a description of how participants rate their general health status and highlights potential differences in these processes across sociodemographic groups, helping to provide a more comprehensive understanding of how SRH functions as a measure of health.

Using the Consumer Experience with Pharmacy Services Survey as a quality metric for ambulatory care pharmacies: older adults' perspectives.

OBJECTIVES: To describe older adults' perceptions of evaluating and comparing pharmacies based on the Consumer Experience with Pharmacy Services Survey (CEPSS), describe older adults' perceived importance of the CEPSS and its specific domains, and explore older adults' perceptions of the influence of specific CEPSS domains in choosing/switching pharmacies. DESIGN: Focus group methodology was combined with the administration of a questionnaire. The focus groups explored participants' perceived importance of the CEPSS and their perception of using the CEPSS to choose and/or switch pharmacies. Then, using the questionnaire, participants rated their perceived importance of each CEPSS domain in evaluating a pharmacy, and the likelihood of using CEPSS to switch pharmacies if their current pharmacy had low ratings. Descriptive and thematic analyses were done. SETTING: 6 semistructured focus groups were conducted in a private meeting room in a Mid-Western state in the USA. PARTICIPANTS: 60 English-speaking adults who were at least 65 years, and had filled a prescription at a retail pharmacy within 90 days. RESULTS: During the focus groups, the older adults perceived the CEPSS to have advantages and disadvantages in evaluating and comparing pharmacies. Older adults thought the CEPSS was important in choosing the best pharmacies and avoiding the worst pharmacies. The perceived influence of the CEPSS in switching pharmacies varied depending on the older adult's personal experience or trust of other consumers' experience. Questionnaire results showed that participants perceived health/medication-focused communication as very important or extremely important (n=47, 82.5%) in evaluating pharmacies and would be extremely likely (n=21, 36.8%) to switch pharmacies if their pharmacy had low ratings in this domain. CONCLUSIONS: The older adults in this study are interested in using patient experiences as a quality metric for avoiding the worst pharmacies. Pharmacists' communication about health and medicines is perceived important and likely to influence older adults' pharmacy selection.

The structural and process aspects of pharmacy quality: older adults' perceptions.

BACKGROUND: Patients are increasingly playing an active role in healthcare and their definitions of healthcare quality are becoming more important to understand. The Donabedian model has been used to understand patients' perceptions of quality in healthcare settings including hospitals and nursing homes; no research has applied the model to understand patients' perceptions of pharmacy quality. OBJECTIVE: To describe older adults' perception of a quality pharmacy including their expectations of a quality pharmacy and their preferences in a quality pharmacy. SETTING: Six focus groups held in community centers and senior residence facilities in Wisconsin. METHODS: The design was a descriptive, exploratory study. Participants were adults 65 years and older who filled a prescription at a community pharmacy in the 90 days prior to being contacted. Donabedian's assessment of healthcare quality based on 'structure,' 'process' and 'outcome' was used to organize and categorize the focus group themes. MAIN OUTCOME MEASURE: The focus groups explored older adults' perceptions and expectations of a quality pharmacy. The factors that influenced their pharmacy choice were also examined. Results The older adults' description of a quality pharmacy was based on the 'structure' and 'process' domain of the Donabedian model. However, most responses were focused on the 'process' domains and related to the application of patient-centered care (e.g., pharmacist interaction and communication) versus the structure domains (e.g., staff availability). The most frequently reported factor in the choice of pharmacies was the pharmacy's location with some participants also reporting that their relationship and rapport with the pharmacist were also important. Older adults' expectations were focused on the 'process' features of quality, including the provision of medication-related information, and the pharmacist facilitating medication safety and medication adherence. CONCLUSIONS: In describing pharmacy quality, older adults mostly refer to the 'process' aspects of quality. Older adults perceive a quality pharmacy as one where the pharmacist provides patient-centered care. While location is important in pharmacy choices, the pharmacist's patient-centeredness, and the quality features of the pharmacy are also relevant. Older adults' expectations were related to their perception of a quality pharmacy. Pharmacists should publicize their pharmacies' 'process' features in quality reporting systems.

Safeguarding older adults from inappropriate over-the-counter medications: the role of community pharmacists.

PURPOSE OF THE STUDY: To elicit the thought process or mental model that community pharmacists use when making recommendations on over-the-counter (OTC) medications to older adults and to elicit the current practices of community pharmacists in providing information, advice, and counseling to older adults about potentially inappropriate OTC medications. DESIGN AND METHODS: Three separate focus groups with pharmacists were conducted with 5 to 8 pharmacists per group. A vignette about an elderly woman seeking an OTC sleep aid was used to elicit information that pharmacists seek to establish when making a recommendation. Focus groups were recorded, transcribed verbatim, and analyzed for themes using the initial and focused coding methods of grounded theory. RESULTS: Community pharmacists' mental models were characterized by 2 similarities: a similarity in what community pharmacists seek to establish about patients and a similarity in when community pharmacists seek to establish it--the sequence in which they try to learn key details about patients. It was identified that pharmacists gather specific information about the patient's medication profile, health conditions, characteristics of the problem, and past treatments in order to make a recommendation. Community pharmacists recommended behavioral modifications and seeing their physician prior to recommending an OTC sleep aid, primarily due to medication safety concerns. IMPLICATIONS: Pharmacists can play a key role in assisting older adults to select and use OTC medications.

Prevalence of renal dysfunction in tacrolimus-treated pediatric transplant recipients: a systematic review.

Renal dysfunction after non-renal transplantation in adult tacrolimus-treated transplant patients is well documented. Little is known about its prevalence in children. Age-related changes in both disposition and effect of tacrolimus as well as renal function may preclude extrapolation of adult data to children. To systematically review the literature on renal dysfunction in non-renal pediatric transplant recipients treated with tacrolimus. PubMed/Medline, Embase, and Google were searched from their inception until April 19, 2012, with the search terms "tacrolimus," "renal function," "transplantation," and "children." Eighteen of 385 retrieved papers were considered relevant. Twelve dealt with liver, four with heart transplant, one with heart and lung transplant, and one with intestinal recipients. Reported prevalences of mild and severe chronic kidney disease ranged from 0% to 39% and 0% to 71.4%, respectively, for liver, and from 22.7% to 40% and 6.8% to 46%, respectively, for heart and/or lung transplant recipients. Ranges remained wide after adjusting for follow-up time and disease severity. Possible explanations are inclusion bias and definitions used for renal dysfunction. A considerable proportion of pediatric non-renal transplant patients who receive tacrolimus-based immunosuppression, appear to suffer from chronic kidney disease. This conclusion warrants further research into the real risk, its risk factors, and individualization of immunosuppressant therapy.