Measuring Access to Mental Health Services Among Primary Care Patients.

BACKGROUND: The lifetime risk of mental health disorders is almost 50% and, in any year, about 25% of the population have a psychiatric disorder. Many of those people are cared for in primary care settings. RESEARCH OBJECTIVE: Measure access to mental health services, such as getting counselling or prescription mental health medications, using new patient survey questions that can be added to Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. STUDY DESIGN: Surveys were conducted with a stratified probability sample of patients receiving primary care services in a single state in 2018-2019. Medicaid and privately insured patients were surveyed by mail or telephone, respectively. RESULTS: Approximately 14% of sampled patients responded to a survey. More than 10% of privately insured respondents and about 20% of Medicaid respondents got or tried to get appointments for mental health care. About 15% of privately insured respondents and 11% of Medicaid respondents reported problems getting appointments with counselors. Only 8%-9% of respondents seeking mental health medicines reported problems getting appointments for prescriptions. A composite measure combining access to counselors and prescribers of mental health medicines evidenced adequate internal consistency reliability. Group level reliability estimates were low. CONCLUSIONS: Many respondents got or tried to get mental health services and a substantial number reported problems getting appointments or getting mental health prescriptions. The tested questions can be combined into an Access to Mental Health Care measure, which can be included in patient experience surveys for ambulatory care to monitor access to behavioral health care.

How responding in Spanish affects CAHPS results.

BACKGROUND: The most widely used surveys for assessing patient health care experiences in the U.S. are the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys. Studies examining the associations of language and ethnicity with responses to CAHPS surveys have yielded inconsistent findings. More research is needed to assess the effect of responding to CAHPS surveys in Spanish. METHODS: Subjects were patients who had received care at a study community health center in Connecticut within 6 or 12 months of being sent a CAHPS survey that asks about care experiences. The survey included four multi-item measures of care plus an overall rating of the provider. Sampled patients were mailed dual language (English and Spanish) cover letters and questionnaires. Those who did not respond after follow-up mailings were contacted by bilingual interviewers to complete the survey by telephone. We tested three hypotheses for any observed differences by ethnicity and language: 1. Spanish speakers are more likely than others to choose extreme response options. 2. The semantic meaning of the Spanish translation is not the same as the English version of the questions, resulting in Spanish speakers giving different answers because of meaning differences. 3. Spanish speakers have different expectations regarding their health care than those who answer in English. Analyses compared the answers on the survey measures for three groups: non-Hispanics answering in English, Hispanics answering in English, and Hispanics answering in Spanish. RESULTS: The overall response rate was 45%. After adjusting for differences in demographic characteristics and self-rated health, those answering in Spanish gave significantly more positive reports than the other two groups on three of the five measures, and higher than the non-Hispanic respondents on a fourth. CONCLUSIONS: Those answering in Spanish gave more positive reports of their medical experiences than Hispanics and non-Hispanics answering in English. Whether these results reflect different response tendencies, different standards for care, or better care experiences is a key issue in whether CAHPS responses in Spanish need adjustment to make them comparable to responses in English.

Measuring shared decision-making in younger and older adults with depression.

BACKGROUND: This study examined the performance of the shared decision-making (SDM) Process scale in patients with depression, compared alternative wording of two items in the scale and explored performance in younger adults. METHODS: A web-based non-probability panel of respondents with depression aged 18-39 (younger) or 40-75 (older) who talked with a health-care provider about starting or stopping treatment for depression in the past year were surveyed. Respondents completed one of two versions of the SDM Process scale that differed in the wording of pros and cons items and completed measures of decisional conflict, decision regret and who made the decision (mainly the respondent, mainly the provider or together). A subset of respondents completed a retest survey by 1 week. We examined how version and age group impacted SDM Process scores and calculated construct validity and retest reliability. We hypothesized that patients with higher SDM Process scores would show less decisional conflict using the SURE scale (range = 0-4); top score = no conflict versus other and less regret (range 1-4; higher scores indicated more regret). RESULTS: The sample (N = 494) was majority White, non-Hispanic (82%) and female (72%), 48% were younger and 23% had a high school education or less. SDM Process scores did not differ by version (P = 0.09). SDM Process scores were higher for younger respondents (M = 2.6, SD = 1.0) than older respondents (M = 2.3, SD = 1.1; P = 0.001). Higher SDM Process scores were also associated with no decisional conflict (M = 2.6, SD = 0.99 vs. M = 2.1, SD = 1.2; P < 0.001) and less decision regret (r = -0.18, P < 0.001). Retest reliability was intraclass correlation coefficient = 0.81. CONCLUSIONS: The SDM Process scale demonstrated validity and retest reliability in younger adults, and changes to item wording did not impact scores. Although younger respondents reported more SDM, there is room for improvement in SDM for depression treatment decisions.

Cognitive and field testing of a new set of medication adherence self-report items for HIV care.

We conducted four rounds of cognitive testing of self-report items that included 66 sociodemographically diverse participants, then field tested the three best items from the cognitive testing in a clinic waiting room (N = 351) and in an online social networking site for men who have sex with men (N = 6,485). As part of the online survey we conducted a randomized assessment of two versions of the adherence questionnaire-one which asked about adherence to a specific antiretroviral medication, and a second which asked about adherence to their "HIV medicines" as a group. Participants were better able to respond using adjectival and adverbial scales than visual analogue or percent items. The internal consistency reliability of the three item adherence scale was 0.89. Mean scores for the two different versions of the online survey were similar (91.0 vs. 90.2, p < 0.05), suggesting that it is not necessary, in general, to ask about individual medications in an antiretroviral therapy regimen when attempting to describe overall adherence.

Development and evaluation of a new survey instrument to measure the quality of colorectal cancer screening decisions.

BACKGROUND: Guidelines for colorectal cancer screening recommend that patients be informed about options and be able to select preferred method of screening; however, there are no existing measures available to assess whether this happens. METHODS: Colorectal Cancer Screening Decision Quality Instrument (CRC-DQI) includes knowledge items and patients' goals and concerns. Items were generated through literature review and qualitative work with patients and providers. Hypotheses relating to the acceptability, feasibility, discriminant validity and retest reliability of the survey were examined using data from three studies: (1) 2X2 randomized study of participants recruited online, (2) cross-sectional sample of patients recruited in community health clinics, and (3) cross-sectional sample of providers recruited from American Medical Association Master file. RESULTS: 338 participants were recruited online, 94 participants were recruited from community health centers, and 115 physicians were recruited. The CRC-DQI was feasible and acceptable with low missing data and high response rates for both online and paper-based administrations. The knowledge score was able to discriminate between those who had seen a decision aid or not (84% vs. 64%, p < 0.001) and between providers, online patients and clinic patients (89% vs. 74% vs. 41%, p < 0.001 for all comparisons). The knowledge score and most of the goals had adequate retest reliability. About half of the participants received a test that matched their goals (47% and 51% in online and clinic samples respectively). Many respondents who had never been screened had goals that indicated a preference for colonoscopy. A minority of respondents in the online (21%) and in clinic (2%) samples were both well informed and received a test that matched their goals. CONCLUSIONS: The CRC-DQI demonstrated good psychometric properties in diverse samples, and across different modes of administration. Few respondents made high quality decisions about colon cancer screening.

Changes in Antidementia Medications upon Admission to the Nursing Home: Who Decides and Why? Results From a National Survey of Nursing Home Administrators.

OBJECTIVE: Little is known about who is involved and what factors influence changes in antidementia medications for older adults living in nursing homes. The study sought to describe factors associated with initiation and discontinuation of antidementia medications in nursing home residents with dementia. DESIGN: National survey of nursing homes with ≥30 beds; homes with dementia units were oversampled. SETTINGS AND PARTICIPANTS: Nursing home administrators [eg, Directors of Nursing (DoNs)]. METHODS: In 2022, 1293 homes were surveyed (response rate: 26.6%, n = 340). Weighted analyses provided nationally representative results corrected for nonresponse (n = 14,455). RESULTS: DoNs reported that people always/almost always involved in antidementia medication decisions included nursing home prescriber (84.4%), nursing staff (33.2%), family (23.4%), resident (13.8%), community primary care provider (12.1%), and dementia specialist (5.8%). DoNs reported that antidementia medications were much more likely to be initiated if residents (55.8%) and family members (53.2%) wanted antidementia medications, a dementia specialist was involved (51.9%), resident had aggressive behaviors (44.8%), resisted care (31.6%), or had severe physical/cognitive impairment (22.3%). DoNs reported that antidementia medications were much more likely to be discontinued with dementia specialist involvement (46.5%), progression to severe impairment (39.2%), hospice involvement (31.5%), <6 months' prognosis (28.5%), emergence of aggressive behaviors (25.2%), or resisting care (19.0%) and much less likely to be discontinued if residents (30.2%) and family (27.3%) were reluctant to discontinue. One in 6 homes reported that residents had no immediate family/caregivers usually or almost always/always. CONCLUSIONS AND IMPLICATIONS: DoNs report that family/caregivers and dementia specialists have significant influence on antidementia medication decisions in nursing homes, but many residents lack their involvement. Real-world evidence on the risks and benefits of antidementia medications in nursing homes is needed to inform clinical guidance about appropriate use of antidementia medications in nursing homes.

Measure of Caregiver Attention-Deficit/Hyperactivity Disorder Knowledge Is Responsive to Decision Aid on Treatment for Attention-Deficit/Hyperactivity Disorder.

OBJECTIVE: Adapt and test a measure of knowledge for caregivers of children with attention-deficit/hyperactivity disorder (ADHD) and evaluate the impact of the information component of a decision aid (DA) on participant knowledge. METHODS: A set of seven knowledge items were created based on prior knowledge measures and clinical guidelines. As part of a larger cross-sectional survey study of caregivers of children diagnosed with ADHD, caregivers were randomized to one of two arms: 1) a DA arm, where participants reviewed the information component of the Cincinnati Children's Hospital's DA, and 2) a control arm, where participants were not shown a DA. All participants completed the seven knowledge items. Knowledge items were assessed for difficulty, quality of distractors, acceptability, and redundancy. Total knowledge scores (0-100) for the DA and control arm were compared. RESULTS: Caregivers were assigned to the DA arm (n = 243) or the control arm (n = 260). All 7 knowledge items were retained as no items were too difficult or too easy, all response options were used, there were little missing data, and no items were redundant. The overall knowledge score was normally distributed, and almost covered the full range of scores (5-100). Those who received the DA component had higher knowledge scores (M=68, SD=23) than those who did not receive the DA component (M=60, SD=19, P < .01, d=0.4). CONCLUSIONS: The Caregiver ADHD Knowledge (CAKe) measure was acceptable and demonstrated construct validity as those who were assigned to review the DA component demonstrated greater knowledge than those who were not assigned to review the DA component.

Preparing to measure health coverage in federal surveys post-reform: lessons from Massachusetts.

In preparation for health reform in 2014, qualitative research was conducted with Massachusetts residents to explore how to adapt surveys to accommodate reporting information about health exchanges. Questions about exchange participation were effective when state-specific exchange program names were offered, but generic terms such as "marketplace" and "exchange" did not resonate with respondents. However, respondents were able to understand new questions about premiums and subsidies and to answer with a high degree of accuracy. These questions, taken in tandem with answers on plan type, were sufficient to distinguish among Medicaid, subsidized exchange coverage, and unsubsidized coverage, even without the benefit of state-specific exchange program names.

Rising to the Occasion: A National Nursing Home Study Documenting Attempts to Address Social Isolation During the COVID-19 Pandemic.

OBJECTIVES: COVID-19-related policies introduced extraordinary social disruption in nursing homes. In response, nursing facilities implemented strategies to alleviate their residents' loneliness. This study sought to describe interventions nursing homes used, document the perceived effectiveness of efforts, and determine barriers to implementing strategies to mitigate social isolation and loneliness. DESIGN: National survey of nursing homes sampled in strata defined by facility size (beds: 30-99, 100+) and quality ratings (1, 2-4, 5). SETTINGS AND PARTICIPANTS: US Nursing Home Directors of Nursing/Administrators (n = 1676). METHODS: The survey was conducted between February and May 2022 (response rate: 30%; n = 504, weighted n = 14,506). Weighted analyses provided nationally representative results. RESULTS: One-third were extremely concerned about their home's ability to meet residents' medical and social needs during COVID-19 before vaccines were available and 13% after vaccines. Nearly all reported trying to mitigate residents' social isolation during the pandemic. Efforts tried, and perceived as most useful, included using technology (tablets, phones, emails), assigning staff as a family contact, and more staff time with residents. Most frequently cited barriers to implementation were related to staffing issues. CONCLUSIONS AND IMPLICATIONS: Despite multiple challenges, nearly all nursing homes tried to implement many different approaches to address residents' social needs, with some (eg, having an assigned family contact, use of tablets and phones) perceived as more useful than others. Staffing issues presented barriers for addressing the social needs of nursing home residents. Many strategies for addressing social isolation placed more demands on a workforce already stretched to the limit. While concerns about resident social isolation reduced after vaccine availability, administrators remained extremely concerned about staff burnout and mental health.

U.S. nursing home leadership experiences with COVID-19 and its impact on residents and staff: A qualitative analysis.

OBJECTIVES: To explore experiences of U.S. (United States) nursing home leadership during the COVID-19 pandemic in their efforts to address resident loneliness and social isolation and to elicit stories about personal and professional impacts on themselves and staff. DESIGN: Qualitative inquiry via three optional open-ended questions appended to a national self-administered survey of American nursing home leaders was employed. Textual data was analyzed using an iterative reflexive thematic approach. SETTING AND PARTICIPANTS: A stratified sample frame defined by facility size (beds: 30-99, 100+) and quality ratings (1, 2-4, 5) was employed. Web survey links and paper surveys were sent to 1,676 nursing home directors of nursing between February and May 2022. RESULTS: Open text responses were collected from 271 nursing homes. Broad themes included: 1) Addressing needs of residents & families; 2) Challenges; and 3) Personal experiences of nursing home leadership/staff. Respondents described trauma to residents, staff, and leadership. Resident loneliness was addressed using existing and newer technologies and innovative indoor and outdoor activities. Residents experienced fear, illness, loss, and sometimes death. Isolation from family and lack of touch were particularly difficult. Regulations were seen as punitive while ignoring emotional needs of residents. Staffing challenges and pressures to do more with less created additional stress. Leadership and staff made significant sacrifices resulting in physical, social, and emotional consequences. Beneficial outcomes included staff bonding, professional growth, and permanent implementation of new interventions. CONCLUSIONS AND IMPLICATIONS: New and creative interventions were successfully implemented to address social isolation and loneliness. Improved Wi-Fi and other nursing home infrastructure upgrades are needed to maintain them. Reimagining often conflicting overlapping federal, state, and local regulations, grounding them in good clinical judgement, and incentivizing performance improvement should be considered. Trauma experienced by staff needs to be addressed to deal with current and future workforce needs.

Giving voice to the vulnerable: the development of a CAHPS nursing home survey measuring family members' experiences.

BACKGROUND: To complement a nursing home resident survey, the team developed a survey asking family members about their experiences with nursing homes. Although a family member does not receive care directly from a nursing home, their experiences at the nursing home and with staff can contribute to understanding nursing home quality. OBJECTIVES: To describe how the nursing home family member instrument was developed, refined, tested, and finalized. RESEARCH DESIGN: The team developed a draft survey using information from a literature review, 12 focus groups with family members involved in choosing a nursing home for someone, review of nursing home surveys, and expert/stakeholder input. The survey went through 2 rounds of cognitive interviews (n=54) and revisions and was fielded in 15 nursing homes. Data from the pilot survey (n=885) were subjected to psychometric analyses to evaluate the measurement properties of items as well as the reliability and validity of the resulting composites. On the basis of these analyses and input from experts, the survey was finalized. RESULTS: Focus groups and experts provided input into discerning important indicators of quality, although in some cases family members were not the best sources of information. Cognitive testing refined the survey and eliminated some of the proxy items. The field test analysis and input from experts eliminated 10 items. The final survey included 21 items organized into 4 composites. CONCLUSIONS: This survey measures family members' experiences of nursing home care, and the results contribute to the understanding of quality of care in nursing homes.

Development and evaluation of CAHPS questions to assess the impact of health information technology on patient experiences with ambulatory care.

BACKGROUND: Little is known about whether health information technology (HIT) affects patient experiences with health care. OBJECTIVE: To develop HIT questions that assess patients care experiences not evaluated by existing ambulatory Consumer Assessment of Health Plans and Systems (CAHPS) measures. RESEARCH DESIGN: We reviewed published articles and conducted focus groups and cognitive testing to develop survey questions. We collected data, using mail and the internet, from patients of 69 physicians receiving care at an academic medical center and 2 regional integrated delivery systems in late 2009 and 2010. We evaluated questions and scales about HIT using factor analysis, item-scale correlations, and reliability (internal consistency and physician-level) estimates. RESULTS: We found support for 3 HIT composites: doctor use of computer (2 items), e-mail (2 items), and helpfulness of provider's website (4 items). Corrected item-scale correlations were 0.37 for the 2 doctor use of computer items and 0.71 for the 2 e-mail items, and ranged from 0.50 to 0.60 for the provider's website items. Cronbach α was high for e-mail (0.83) and provider's website (0.75), but only 0.54 for doctor use of computer. As few as 50 responses per physician would yield reliability of 0.70 for e-mail and provider's website. Two HIT composites, doctor use of computer (P<0.001) and provider's website (P=0.02), were independent predictors of overall ratings of doctors. CONCLUSIONS: New CAHPS HIT items were identified that measure aspects of patient experiences not assessed by the CAHPS C&G 1.0 survey.

Measuring decision quality: psychometric evaluation of a new instrument for breast cancer surgery.

BACKGROUND: The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals. METHODS: Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined. RESULTS: We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient=0.70) and discriminated between providers and patients (mean difference 35%, p<0.001). The majority of providers felt that the knowledge items covered content that was essential for the decision. Five of the 6 treatment goals met targets for content validity. The five goals had moderate to strong retest reliability (0.64 to 0.87). The concordance score was 89%, indicating that a majority had treatments concordant with that predicted by their goals. Patients who had concordant treatment had similar levels of confidence and regret as those who did not. CONCLUSIONS: The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.

Pediatric Caregiver Version of the Shared Decision Making Process Scale: Validity and Reliability for ADHD Treatment Decisions.

OBJECTIVE: Shared decision making (SDM) is recommended for common pediatric conditions; however, there are limited data on measures of SDM in pediatrics. This study adapted the SDM Process scale and examined validity and reliability of the scale for attention-deficit/hyperactivity disorder (ADHD) treatment decisions. METHODS: Cross-sectional survey of caregivers (n = 498) of children (aged 5-13) diagnosed with ADHD, who had made a decision about ADHD medication in the last 2 years. Surveys included the adapted SDM Process scale (scores range 0-4, higher scores indicate more SDM), decisional conflict, decision regret, and decision involvement. Validity was assessed by testing hypothesized relationships between these constructs. A subset of participants was surveyed a week later to assess retest reliability. RESULTS: Pediatric Caregiver version of the SDM Process scale (M = 2.8, SD = 1.05) showed no evidence of floor or ceiling effects. The scale was found to be acceptable (<1% missing data) and reliable (intraclass correlation coefficient = 0.74). Scores demonstrated convergent validity, as they were higher for those without decisional conflict than those with decisional conflict (2.93 vs 2.46, P < .001, d = 0.46), and higher for caregivers who stated they made the decision with the provider than those who made the decision themselves (3.0 vs 2.7; P = .003). Higher scores were related to less regret (r = -0.15, P < .001), though the magnitude of the relationship was small. CONCLUSIONS: The adapted Pediatric Caregiver version of the SDM Process scale demonstrated acceptability, validity and reliability in the context of ADHD medication decisions made by caregivers of children 5-13. Scores indicate pediatricians generally involve caregivers in decision making about ADHD medication.

Using Standardized Videos to Examine the Validity of the Shared Decision Making Process Scale: Results of a Randomized Online Experiment.

BACKGROUND: The Shared Decision Making (SDM) Process scale is a brief, patient-reported measure of SDM with demonstrated validity in surgical decision making studies. Herein we examine the validity of the scores in assessing SDM for cancer screening and medication decisions through standardized videos of good-quality and poor-quality SDM consultations. METHOD: An online sample was randomized to a clinical decision-colon cancer screening or high cholesterol-and a viewing order-good-quality video first or poor-quality video first. Participants watched both videos, completing a survey after each video. Surveys included the SDM Process scale and the 9-item SDM Questionnaire (SDM-Q-9); higher scores indicated greater SDM. Multilevel linear regressions identified if video, order, or their interaction predicted SDM Process scores. To identify how the SDM Process score classified videos, area under the curve (AUC) was calculated. The correlation between SDM Process score and SDM-Q-9 assessed construct validity. Heterogeneity analyses were conducted. RESULTS: In the sample of 388 participants (68% white, 70% female, average age 45 years) good-quality videos received higher SDM Process scores than poor-quality videos (Ps < 0.001), and those who viewed the good-quality high cholesterol video first tended to rate the videos higher. SDM Process scores were related to SDM-Q-9 scores (rs > 0.58; Ps < 0.001). AUC was poor (0.69) for the high cholesterol model and fair (0.79) for the colorectal cancer model. Heterogeneity analyses suggested individual differences were predictive of SDM Process scores. CONCLUSION: SDM Process scores showed good evidence of validity in a hypothetical scenario but were lacking in ability to classify good-quality or poor-quality videos accurately. Considerable heterogeneity of scoring existed, suggesting that individual differences played a role in evaluating good- or poor-quality SDM conversations.

Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation.

BACKGROUND: A high quality decision requires that patients who meet clinical criteria for surgery are informed about the options (including non-surgical alternatives) and receive treatments that match their goals. The aim of this study was to evaluate the psychometric properties and clinical sensibility of a patient self report instrument, to measure the quality of decisions about total joint replacement for knee or hip osteoarthritis. METHODS: The performance of the Hip/Knee Osteoarthritis Decision Quality Instrument (HK-DQI) was evaluated in two samples: (1) a cross-sectional mail survey with 489 patients and 77 providers (study 1); and (2) a randomized controlled trial of a patient decision aid with 138 osteoarthritis patients considering total joint replacement (study 2). The HK-DQI results in two scores. Knowledge items are summed to create a total knowledge score, and a set of goals and concerns are used in a logistic regression model to develop a concordance score. The concordance score measures the proportion of patients whose treatment matched their goals. Hypotheses related to acceptability, feasibility, reliability and validity of the knowledge and concordance scores were examined. RESULTS: In study 1, the HK-DQI was completed by 382 patients (79%) and 45 providers (58%), and in study 2 by 127 patients (92%), with low rates of missing data. The DQI-knowledge score was reproducible (ICC = 0.81) and demonstrated discriminant validity (68% decision aid vs. 54% control, and 78% providers vs. 61% patients) and content validity. The concordance score demonstrated predictive validity, as patients whose treatments were concordant with their goals had more confidence and less regret with their decision compared to those who did not. CONCLUSIONS: The HK-DQI is feasible and acceptable to patients. It can be used to assess whether patients with osteoarthritis are making informed decisions about surgery that are concordant with their goals.

Development of instruments to measure the quality of breast cancer treatment decisions.

BACKGROUND: Women with early-stage breast cancer face a multitude of decisions. The quality of a decision can be measured by the extent to which the treatment reflects what is most important to an informed patient. Reliable and valid measures of patients' knowledge and their goals and concerns related to breast cancer treatments are needed to assess the decision quality. OBJECTIVE: To identify a set of key facts and goals relevant to each of three breast cancer treatment decisions (surgery, reconstruction and adjuvant chemotherapy and hormone therapy) and to evaluate the validity of the methods used to identify them. METHODS: Candidate facts and goals were chosen based on evidence review and qualitative studies with breast cancer patients and providers. Cross-sectional surveys of patients and providers were conducted for each decision. The accuracy, importance and completeness of the items were examined. RESULTS: Thirty-eight facts (11-14 per decision) and 27 goals (8-10 per decision) were identified. An average of 17 patients and 21 providers responded to each survey. The sets of facts were accurate and complete for all three decisions. The sets of goals and concerns were important for surgery and reconstruction, but not chemotherapy/hormone therapy. Patients and providers disagreed about the relative importance of several key facts and goals. CONCLUSIONS: Overall, breast cancer patients and providers found the sets of facts and goals accurate, important and complete for three treatment decisions. Because patients' and providers' perspectives are different, it is vital that instrument development should include items reflecting both views.

Cognitive testing of a survey instrument for self-assessed menstrual cycle characteristics and androgen excess.

BACKGROUND: In large population-based studies, there is a lack of existing survey instruments designed to ascertain menstrual cycle characteristics and androgen excess status including hirsutism, alopecia, and acne. Our objective was to cognitively test a survey instrument for self-assessed menstrual cycle characteristics androgen excess. METHODS: Questions to assess menstrual characteristics and health were designed using existing surveys and clinical experience. Pictorial self-assessment tools for androgen excess were also developed with an experienced medical illustrator to include the modified Ferrimen-Galway, acne and androgenic alopecia. These were combined into an online survey instrument using REDCap. Of the 219 questions, 120 were selected for cognitive testing to assess question comprehension in a population representative of the future study population. RESULTS: Cognitive testing identified questions and concepts not easily comprehended, recalled, or had problematic response choices. Comprehension examples included simplifying the definition for polycystic ovary syndrome and revising questions on historic menstrual regularity and bleeding duration. Recall and answer formation examples include issues with recalling waist size, beverage consumption, and interpretation of questions using symbols (> or <). The survey was revised based on feedback and subsequently used in the Ovulation and Menstruation (OM) Health Pilot study. CONCLUSION: We present a cognitively tested, novel survey instrument to assess menstrual cycle characteristics and androgen excess.

Assessing the Quality of Published Surveys in Ophthalmology.

PURPOSE: Surveys are an important research modality in ophthalmology, but their quality has not been rigorously assessed. This study evaluated the quality of published ophthalmic surveys. METHODS: Three survey methodologists, three senior ophthalmologists, and two research assistants developed a survey evaluation instrument focused on survey development and testing; sampling frame; response bias; results reporting; and ethics. Two investigators used the instrument to assess the quality of all ophthalmic surveys that were published between January 1, 2018 and December 31, 2018; indexed in MEDLINE/PubMed, Embase, and/or Web of Science; contained the search terms "ophthalmology" and "survey" or "questionnaire" in the title and/or abstract; and were available in English. RESULTS: The search identified 626 articles; 60 met the eligibility criteria and were assessed with the survey evaluation instrument. Most surveys (93%; 56/60) defined the study population; 48% (29/60) described how question items were chosen; 30% (18/60) provided the survey for review or described the questions in sufficient detail; 30% (18/60) were pre-tested or piloted; 25% (15/60) reported validity/clinical sensibility testing; 15% (9/60) described techniques used to assess non-response bias; and 63% (38/60) documented review by an institutional review board (IRB). CONCLUSION: The quality of published ophthalmic surveys can be improved by focusing on survey development, pilot testing, non-response bias and institutional review board review. The survey evaluation instrument can help guide researchers in conducting quality ophthalmic surveys and assist journal editors in evaluating surveys submitted for publication.

Examining Physician Interactions with Disease Advocacy Organizations.

Disease advocacy organizations (DAOs) have traditionally focused on raising awareness of rare diseases, providing educational resources to patients, and supporting patients and families. Previous research has described how scientists collaborate with DAOs, but few empirical data are available regarding the extent to which physicians interact with DAOs and how those interactions impact patient care. We conducted a national survey of 230 board-certified pediatric neurologists to assess their engagement with DAOs and their beliefs about the impact of DAOs on patient care. In that context, we evaluated a set of 24 items describing interactions between physicians and DAOs. Exploratory factor analysis produced a 19-item model capturing four types of physician-DAO engagement: (1) accessing or distributing DAO-produced materials (6 items, alpha = 0.80); (2) consulting on DAO activities (5 items, alpha = 0.81); (3) collaborating with DAOs on research activities (6 items, alpha = 0.80); and (4) co-producing scholarly materials with DAOs (2 items, alpha = 0.80). Our data indicate that physicians engage with DAOs in more frequent and diverse ways than has been previously reported. Almost all physicians in our sample had interacted directly with a DAO in some way, from low-effort activities such as visiting a DAO's website to deeper forms of engagement including coauthoring journal articles. These findings may provide a framework for bioethicists to characterize the nature and extent of physician interactions with advocacy organizations, which is critical for evaluating the ethical implications of physician-DAO relationships.