While much attention has been directed at improving the quality of care at the end of life, few s... more While much attention has been directed at improving the quality of care at the end of life, few studies have examined what determines a good death in different individuals. We sought to identify common domains that characterize a good death in a diverse range of community-dwelling individuals, and to describe differences that might exist between minority and non-minority community-dwelling individuals' views. Using data from 13 focus groups, we identified 10 domains that characterize the quality of the death experience: 1) physical comfort, 2) burdens on family, 3) location and environment, 4) presence of others, 5) concerns regarding prolongation of life, 6) communication, 7) completion and emotional health, 8) spiritual care, 9) cultural concerns, 10) individualization. Differences in minority compared to non-minority views were apparent within the domains of spiritual concerns, cultural concerns, and individualization. The findings may help in efforts to encourage more culturally sensitive and humane end-of-life care for both minority and non-minority individuals. Resume I Alors que beaucoup d'etudes se sont attardees sur I'importance d'amellorer la quahte des soins de fin de vie, peu d'entre elles se sont penchees sur les facteurs qui constituent une « bonne mort ", une mort douce et sereine. Dans notre projet, nous avons tente de cerner les points communs caracterisant une bonne mort et de decrlre les differents points de vue axprlmes par les groupes minoritaires et les groupes non-minoritaires vivant dans une msme cornmunaute. A partir de donnees
The US Food and Drug Administration (FDA) Amendments Act of 2007 authorized the FDA to require ri... more The US Food and Drug Administration (FDA) Amendments Act of 2007 authorized the FDA to require risk evaluation and mitigation strategy (REMS) programs for drugs with important safety concerns. REMS can have elements to assure safe use (ETASU), such as patient registries, dispensing restrictions, and physician training and certification requirements. We aimed to understand physician experiences with and perceptions of a selection of ETASU REMS. Methods Physicians prescribing 1 of 4 ETASU REMS-covered drugs: natalizumab, riociguat, sodium oxybate, and vigabatrin. Study design Descriptive phenomenological study based on semi-structured phone interviews. Data collection/Extraction methods Qualitative content analysis to summarize physician responses to open-ended questions. Results Of 31 physicians (14 female), 6 prescribed riociguat, 6 vigabatrin, 7 sodium oxybate, and 12 natalizumab (5 for Crohn's disease, 7 for multiple sclerosis), most demonstrated good understanding of the rationale for and requirements of the ETASU REMS but believed that the programs had limited effect on clinical practice. Some physicians reported that the ETASU REMS made them more comfortable with prescribing covered drugs due to heightened oversight, facilitated discussions about treatment, and were likely more beneficial for non-specialists. Concerns were raised about the administrative effort needed to comply with
School health is an area which brings together the tripartate concerns of medical educational and... more School health is an area which brings together the tripartate concerns of medical educational and applied anthropology. Anthropologists from the University of Connecticut have been involved since 1976 in a variety of activities and settings of health education and services for school aged children in the Hartford area. The following is a brief description of some of these projects.
Background Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This ... more Background Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This syndrome is associated with many comorbidities and impairments related to motor function, breathing, sleep, expressive language, and repetitive hand movements. The Rett Syndrome Behaviour Questionnaire (RSBQ) is one measure used to assess changes in Rett syndrome–related manifestations or core symptoms. Little is known about how caregivers think about meaningful changes in the items that make up the RSBQ scale. Methods This qualitative study explored how caregivers of individuals with Rett syndrome viewed changes in the symptoms covered in the RSBQ. We conducted semistructured interviews with 40 caregivers and employed thematic analysis, identifying themes using an iterative process. Results Two factors characterized caregivers’ thoughts about meaningful changes in Rett syndrome manifestations. First, general features of these symptoms rendered them bothersome: the extent of bother compared to other symptoms, if or how they prevented desirable behaviors and their temporal qualities. Second, caregivers evaluated the meaning of improvements by considering the decrease in bother and the potential benefits of change. Improvements had social and psychological consequences for individuals with Rett syndrome and caregivers. In addition, implications for health, fine and gross motor skills, and communication were also substantial.
A qualitative study to elicit views among residents of Connecticut about death, dying, preference... more A qualitative study to elicit views among residents of Connecticut about death, dying, preferences for care, and gaps in available care was conducted for the Connecticut Coalition to Improve End-of-Life Care. Twenty-eight focus groups were convened across the state between May 1999 and March 2001. The focus groups included adolescents and adults from diverse religious, ethnic, and professional backgrounds. A total of 196 individuals participated in the 90-minute sessions. Trained moderators conducted the discussion groups following a guide. Transcriptions of the groups were coded to identify themes. Thirty-two recommendations to improve care based on the focus group discussions are presented. These are grouped under the following actions: 1) enhance public education; 2) offer better professional provider education and support; and 3) augment services. The recommendations are illustrated with quotations from the focus groups.
We investigated the prevalence of angina (as determined by the Rose Questionnaire) in a random sa... more We investigated the prevalence of angina (as determined by the Rose Questionnaire) in a random sample of African-American and white adults, aged 44 to 75 years, in three Boston (Mass) neighborhoods. Telephone interviews were completed by 2030 eligible subjects (response rate = 87.9%). A sample of 737 persons who had never been hospitalized for a heart attack also participated in a home visit. The prevalence of Rose angina was 7.0% in black women, 4.8% in white women, 5.0% in black men, and 5.7% in white men (P = .37). In both racial groups, respondents with diagnosed cardiovascular conditions, those taking cardiovascular medications, and those living alone were more likely to report angina than were other respondents. Blacks were more likely to report angina if they felt they were not getting needed medical care. Risk of angina declined with age among whites. In the home visit sample, the presence of major electrocardiogram abnormalities was also associated with angina. Rose angina appears to be influenced by similar risk factors in both blacks and whites.
To measure self-efficacy with respect to risk behaviors for HIV infection, a set of questionnaire... more To measure self-efficacy with respect to risk behaviors for HIV infection, a set of questionnaire items was developed regarding condom use, drug use with friends, and negotiations with potential sex partners. These items were tested with a sample of Latinos aged 14 to 22 years in two New England cities. A nine-item self-efficacy scale was found to have a high level of internal consistency (Cronbach's alpha = .77). Reliability coefficients were similar for men, women, and both English- and Spanish-speaking respondents. Strong associations with recent performance accomplishments, as specified in Bandura's social cognitive theory, support the construct validity of the scale.
Until recently, minority populations have been inadequately or inaccurately represented in health... more Until recently, minority populations have been inadequately or inaccurately represented in health research. Researchers are now recognizing the need to improve the validity and reliability of data on the health status and health-related behaviors of minorities. This paper discusses important methodological issues in conducting health survey research in minority communities: construction of an appropriate sampling frame, response rates, attrition from panel studies, and response patterns. These themes are illustrated with data from three field studies at the New England Research Institute. Two of these studies focus on inner-city Puerto Rican youth, a group rapidly increasing in size. The extent and multiplicity of problems experienced by this group affect the complexity of survey protocols. The third study is a random-digit-dial telephone survey on health care utilization for coronary heart disease by black and white adults from three inner-city neighborhoods in Boston. The conclusions drawn from the Institute's experience are corroborated by other scientific studies. First, the sociocultural characteristics of the community or group selected for study must be considered in planning and implementing any survey research on minority populations. Second, ensuring the quality of field work with minority groups may be expensive because of high residential mobility and lack of preexisting sampling frames. Third, there is no reason to expect any diminution of data quality with minority groups, provided the resources for data collection are adequate. The quality of data is undoubtedly proportional to the field efforts expended, but the costs of high-quality survey work are often not appreciated. The paper questions the utility of the term "minority research," for it disregards the considerable variation between and within minority groups and subcultures.
A methodology for a process evaluation system as applied to the Pawtucket Heart Health Program is... more A methodology for a process evaluation system as applied to the Pawtucket Heart Health Program is described. The rationale, goals, and design of this system, which are suited to the documentation of community demonstration programs or other interventions, are discussed. Examples of data from the system are provided, including those from linked, computer-based files for the systematic tracking of program activities and the characteristics of program participants. Also discussed are approaches to maintaining such a system in a context of limited resources.
Intervention activities AIDS program: 1 = hosted AIDS discussion group in home; 0 = otherwise. AI... more Intervention activities AIDS program: 1 = hosted AIDS discussion group in home; 0 = otherwise. AIDS workshop: 1 = attended AIDS workshop or forum outside of home; 0 = otherwise. Condom kit: 1 = received condom kit, including condoms and information about how to use them; 0 = otherwise. Free condom: 1 = received free condom in the last 6 months; 0 = otherwise. Study design Smoking study participant: 1 = participant in previous smoking study; 0 = otherwise. Months to follow-up: number of months between the baseline and follow-up interviews.
Journal of General Internal Medicine, Feb 21, 2007
BACKGROUND: Patient participation in shared decision making (SDM) results in increased patient kn... more BACKGROUND: Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire. OBJECTIVE: To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient's perspective. DESIGN: Qualitative study. SETTING: Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes. PATIENTS: Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements. MEASUREMENTS: Respondents' experiences and beliefs related to patient participation in SDM. RESULTS: Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient's responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time. LIMITATIONS: The generalizability of the results is limited by the homogeneity of the study sample. CONCLUSIONS: Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and "buy in" to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.
PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves p... more PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients' low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics. METHODS The HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers). RESULTS We identified themes in patient/family tool-related responses, including the desire to view a patientfriendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients' communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool. CONCLUSION There was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.
Background. Current screening instruments for hypogonadism lack adequate specificity and diagnost... more Background. Current screening instruments for hypogonadism lack adequate specificity and diagnostic accuracy. A new self-administered questionnaire of hypogonadism symptoms is being developed to address this need. The process for questionnaire development and results from the first (qualitative) phase are presented. Methods. Qualitative interviews were conducted based on a new conceptual model of hypogonadism and according to standards for questionnaire development. An item pool was generated from focus groups and in-depth interviews with two groups of hypogonadal patients, treated (N ¼ 26) and untreated (N ¼ 26), and age-equivalent controls (N ¼ 28). Standardized scoring of the qualitative interviews was used to confirm conceptual domains in the model and to generate questionnaire items for further validation. Results. Key domains identified in both patients and controls included: (a) physical function; (b) bodily signs and symptoms; (c) sexual function and libido; (d) sleep function; (e) mood and affective function; (f) memory and cognitive function. The final domain is distress or bother associated with hypogonadism symptoms. This domain was only relevant to the patient groups. Conclusions. The first stage in the design of a new hypogonadism screener has been completed. Seven domains were identified and draft items were developed in each domain according to current standards of patient-reported outcomes.
Introduction The US Food and Drug Administration uses drug safety communications (DSCs) to releas... more Introduction The US Food and Drug Administration uses drug safety communications (DSCs) to release emerging information regarding post-market safety issues, but it is unclear the extent of awareness by patients and providers of these communications and their specific recommendations. Objective We conducted semi-structured interviews with patients and physicians to evaluate their awareness and understanding of emerging drug safety information related to two sleep aids: zolpidem or eszopiclone. Methods We conducted interviews with 40 patients and ten physicians recruited from a combination of insurer claims databases and online sources. We evaluated (1) sources of drug safety information; (2) discussions between patients and physicians about the two medications; (3) their knowledge of the DSC; and (4) preferences for learning about future drug safety information. Interviews were transcribed and analyzed thematically. Results Patients cited their physicians, pharmacy inserts, and the Internet as sources of drug safety information. Physicians often referred to medical journals and online medical sources. Most patients reported being aware of information contained in the DSC summaries they were read. Almost all patients and physicians reported discussing side effects during patient-provider conversations, but almost no patients mentioned that physicians had communicated with them key messaging from the DSCs at issue: the risk of next-morning impairment with zolpidem and the lower recommended initial dose for women. Conclusions Some risks of medications are effectively communicated to patients and physicians; however, there is still a noticeable gap between information issued by the Food and Drug Administration and patient and physician awareness of this knowledge, as well as patients' decisions to act on this information. Disseminators of emerging drug safety information should explore ways of providing userfriendly resources to patients and healthcare professionals that can update them on new risks in a timely manner.
LITERATURE REVIEW Community Capacity Enhancement Traditionally, communities of color bave been co... more LITERATURE REVIEW Community Capacity Enhancement Traditionally, communities of color bave been considered "bard to reacb" for inclusion in health behavior change strategies (Black, Stein, Loveland-Cberry, 2001; Braithwite & Lythcott, 1989). and efforts to address population-specific needs have suffered from tbe lack of comprebensive planning and relied mostly on a deficit model to inform research and practice (Cbaskin,Josepb,& Chipenda-Dansokho. 1997; Morrison et al., 1997). The success of intervention strategies designed to bring about cbange in these populations depends on public engagement and community partnerships in both research and practice (Delgado, 2000; i6
While much attention has been directed at improving the quality of care at the end of life, few s... more While much attention has been directed at improving the quality of care at the end of life, few studies have examined what determines a good death in different individuals. We sought to identify common domains that characterize a good death in a diverse range of community-dwelling individuals, and to describe differences that might exist between minority and non-minority community-dwelling individuals' views. Using data from 13 focus groups, we identified 10 domains that characterize the quality of the death experience: 1) physical comfort, 2) burdens on family, 3) location and environment, 4) presence of others, 5) concerns regarding prolongation of life, 6) communication, 7) completion and emotional health, 8) spiritual care, 9) cultural concerns, 10) individualization. Differences in minority compared to non-minority views were apparent within the domains of spiritual concerns, cultural concerns, and individualization. The findings may help in efforts to encourage more culturally sensitive and humane end-of-life care for both minority and non-minority individuals. Resume I Alors que beaucoup d'etudes se sont attardees sur I'importance d'amellorer la quahte des soins de fin de vie, peu d'entre elles se sont penchees sur les facteurs qui constituent une « bonne mort ", une mort douce et sereine. Dans notre projet, nous avons tente de cerner les points communs caracterisant une bonne mort et de decrlre les differents points de vue axprlmes par les groupes minoritaires et les groupes non-minoritaires vivant dans une msme cornmunaute. A partir de donnees
The US Food and Drug Administration (FDA) Amendments Act of 2007 authorized the FDA to require ri... more The US Food and Drug Administration (FDA) Amendments Act of 2007 authorized the FDA to require risk evaluation and mitigation strategy (REMS) programs for drugs with important safety concerns. REMS can have elements to assure safe use (ETASU), such as patient registries, dispensing restrictions, and physician training and certification requirements. We aimed to understand physician experiences with and perceptions of a selection of ETASU REMS. Methods Physicians prescribing 1 of 4 ETASU REMS-covered drugs: natalizumab, riociguat, sodium oxybate, and vigabatrin. Study design Descriptive phenomenological study based on semi-structured phone interviews. Data collection/Extraction methods Qualitative content analysis to summarize physician responses to open-ended questions. Results Of 31 physicians (14 female), 6 prescribed riociguat, 6 vigabatrin, 7 sodium oxybate, and 12 natalizumab (5 for Crohn's disease, 7 for multiple sclerosis), most demonstrated good understanding of the rationale for and requirements of the ETASU REMS but believed that the programs had limited effect on clinical practice. Some physicians reported that the ETASU REMS made them more comfortable with prescribing covered drugs due to heightened oversight, facilitated discussions about treatment, and were likely more beneficial for non-specialists. Concerns were raised about the administrative effort needed to comply with
School health is an area which brings together the tripartate concerns of medical educational and... more School health is an area which brings together the tripartate concerns of medical educational and applied anthropology. Anthropologists from the University of Connecticut have been involved since 1976 in a variety of activities and settings of health education and services for school aged children in the Hartford area. The following is a brief description of some of these projects.
Background Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This ... more Background Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This syndrome is associated with many comorbidities and impairments related to motor function, breathing, sleep, expressive language, and repetitive hand movements. The Rett Syndrome Behaviour Questionnaire (RSBQ) is one measure used to assess changes in Rett syndrome–related manifestations or core symptoms. Little is known about how caregivers think about meaningful changes in the items that make up the RSBQ scale. Methods This qualitative study explored how caregivers of individuals with Rett syndrome viewed changes in the symptoms covered in the RSBQ. We conducted semistructured interviews with 40 caregivers and employed thematic analysis, identifying themes using an iterative process. Results Two factors characterized caregivers’ thoughts about meaningful changes in Rett syndrome manifestations. First, general features of these symptoms rendered them bothersome: the extent of bother compared to other symptoms, if or how they prevented desirable behaviors and their temporal qualities. Second, caregivers evaluated the meaning of improvements by considering the decrease in bother and the potential benefits of change. Improvements had social and psychological consequences for individuals with Rett syndrome and caregivers. In addition, implications for health, fine and gross motor skills, and communication were also substantial.
A qualitative study to elicit views among residents of Connecticut about death, dying, preference... more A qualitative study to elicit views among residents of Connecticut about death, dying, preferences for care, and gaps in available care was conducted for the Connecticut Coalition to Improve End-of-Life Care. Twenty-eight focus groups were convened across the state between May 1999 and March 2001. The focus groups included adolescents and adults from diverse religious, ethnic, and professional backgrounds. A total of 196 individuals participated in the 90-minute sessions. Trained moderators conducted the discussion groups following a guide. Transcriptions of the groups were coded to identify themes. Thirty-two recommendations to improve care based on the focus group discussions are presented. These are grouped under the following actions: 1) enhance public education; 2) offer better professional provider education and support; and 3) augment services. The recommendations are illustrated with quotations from the focus groups.
We investigated the prevalence of angina (as determined by the Rose Questionnaire) in a random sa... more We investigated the prevalence of angina (as determined by the Rose Questionnaire) in a random sample of African-American and white adults, aged 44 to 75 years, in three Boston (Mass) neighborhoods. Telephone interviews were completed by 2030 eligible subjects (response rate = 87.9%). A sample of 737 persons who had never been hospitalized for a heart attack also participated in a home visit. The prevalence of Rose angina was 7.0% in black women, 4.8% in white women, 5.0% in black men, and 5.7% in white men (P = .37). In both racial groups, respondents with diagnosed cardiovascular conditions, those taking cardiovascular medications, and those living alone were more likely to report angina than were other respondents. Blacks were more likely to report angina if they felt they were not getting needed medical care. Risk of angina declined with age among whites. In the home visit sample, the presence of major electrocardiogram abnormalities was also associated with angina. Rose angina appears to be influenced by similar risk factors in both blacks and whites.
To measure self-efficacy with respect to risk behaviors for HIV infection, a set of questionnaire... more To measure self-efficacy with respect to risk behaviors for HIV infection, a set of questionnaire items was developed regarding condom use, drug use with friends, and negotiations with potential sex partners. These items were tested with a sample of Latinos aged 14 to 22 years in two New England cities. A nine-item self-efficacy scale was found to have a high level of internal consistency (Cronbach's alpha = .77). Reliability coefficients were similar for men, women, and both English- and Spanish-speaking respondents. Strong associations with recent performance accomplishments, as specified in Bandura's social cognitive theory, support the construct validity of the scale.
Until recently, minority populations have been inadequately or inaccurately represented in health... more Until recently, minority populations have been inadequately or inaccurately represented in health research. Researchers are now recognizing the need to improve the validity and reliability of data on the health status and health-related behaviors of minorities. This paper discusses important methodological issues in conducting health survey research in minority communities: construction of an appropriate sampling frame, response rates, attrition from panel studies, and response patterns. These themes are illustrated with data from three field studies at the New England Research Institute. Two of these studies focus on inner-city Puerto Rican youth, a group rapidly increasing in size. The extent and multiplicity of problems experienced by this group affect the complexity of survey protocols. The third study is a random-digit-dial telephone survey on health care utilization for coronary heart disease by black and white adults from three inner-city neighborhoods in Boston. The conclusions drawn from the Institute's experience are corroborated by other scientific studies. First, the sociocultural characteristics of the community or group selected for study must be considered in planning and implementing any survey research on minority populations. Second, ensuring the quality of field work with minority groups may be expensive because of high residential mobility and lack of preexisting sampling frames. Third, there is no reason to expect any diminution of data quality with minority groups, provided the resources for data collection are adequate. The quality of data is undoubtedly proportional to the field efforts expended, but the costs of high-quality survey work are often not appreciated. The paper questions the utility of the term "minority research," for it disregards the considerable variation between and within minority groups and subcultures.
A methodology for a process evaluation system as applied to the Pawtucket Heart Health Program is... more A methodology for a process evaluation system as applied to the Pawtucket Heart Health Program is described. The rationale, goals, and design of this system, which are suited to the documentation of community demonstration programs or other interventions, are discussed. Examples of data from the system are provided, including those from linked, computer-based files for the systematic tracking of program activities and the characteristics of program participants. Also discussed are approaches to maintaining such a system in a context of limited resources.
Intervention activities AIDS program: 1 = hosted AIDS discussion group in home; 0 = otherwise. AI... more Intervention activities AIDS program: 1 = hosted AIDS discussion group in home; 0 = otherwise. AIDS workshop: 1 = attended AIDS workshop or forum outside of home; 0 = otherwise. Condom kit: 1 = received condom kit, including condoms and information about how to use them; 0 = otherwise. Free condom: 1 = received free condom in the last 6 months; 0 = otherwise. Study design Smoking study participant: 1 = participant in previous smoking study; 0 = otherwise. Months to follow-up: number of months between the baseline and follow-up interviews.
Journal of General Internal Medicine, Feb 21, 2007
BACKGROUND: Patient participation in shared decision making (SDM) results in increased patient kn... more BACKGROUND: Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire. OBJECTIVE: To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient's perspective. DESIGN: Qualitative study. SETTING: Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes. PATIENTS: Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements. MEASUREMENTS: Respondents' experiences and beliefs related to patient participation in SDM. RESULTS: Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient's responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time. LIMITATIONS: The generalizability of the results is limited by the homogeneity of the study sample. CONCLUSIONS: Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and "buy in" to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.
PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves p... more PURPOSE Evidence-based somatic and germline sequencing has transformed cancer care and improves patient outcomes. However, patients' low genetic literacy and misunderstanding of their own genomic results poses a threat to the realization of precision oncology. To optimize patient genomic comprehension, we developed a Web-based, patient-directed, genomic sequencing education and return-of-results tool, HOPE-Genomics. METHODS The HOPE-Genomics prototype included somatic and germline sequencing results, embedded multimedia genomic education, and interactive features (eg, request for genetic counseling). Between January and April 2018, we elicited feedback on tool usability and comprehensiveness through participant surveys, 4 focus groups of patients with cancer and their family members, and 3 provider focus groups (comprising 8 patients, 5 family members, and 19 providers). RESULTS We identified themes in patient/family tool-related responses, including the desire to view a patientfriendly report, a desire to receive multiple types of genomic information (eg, prognostic and uncertain), high acceptability of report content, and interest in tool-enabled access to genetic counseling. Major themes from the clinician focus groups included believing the tool could help patients formulate questions and facilitate patients' communication of results to family members. However, there were diverse responses from all participants in terms of tool implementation (ie, timing and nature of report release). Some participants preferred report release before meeting with the provider, and others preferred it during the appointment. Additionally, some clinicians were concerned about providing prognostic and treatment information through the tool. CONCLUSION There was high acceptability and interest from patients, family members, and providers in a patient-directed genomics report. Future work will determine whether direct-to-patient reporting of genomic results improves patient knowledge, care engagement, and compliance with genomically guided interventions.
Background. Current screening instruments for hypogonadism lack adequate specificity and diagnost... more Background. Current screening instruments for hypogonadism lack adequate specificity and diagnostic accuracy. A new self-administered questionnaire of hypogonadism symptoms is being developed to address this need. The process for questionnaire development and results from the first (qualitative) phase are presented. Methods. Qualitative interviews were conducted based on a new conceptual model of hypogonadism and according to standards for questionnaire development. An item pool was generated from focus groups and in-depth interviews with two groups of hypogonadal patients, treated (N ¼ 26) and untreated (N ¼ 26), and age-equivalent controls (N ¼ 28). Standardized scoring of the qualitative interviews was used to confirm conceptual domains in the model and to generate questionnaire items for further validation. Results. Key domains identified in both patients and controls included: (a) physical function; (b) bodily signs and symptoms; (c) sexual function and libido; (d) sleep function; (e) mood and affective function; (f) memory and cognitive function. The final domain is distress or bother associated with hypogonadism symptoms. This domain was only relevant to the patient groups. Conclusions. The first stage in the design of a new hypogonadism screener has been completed. Seven domains were identified and draft items were developed in each domain according to current standards of patient-reported outcomes.
Introduction The US Food and Drug Administration uses drug safety communications (DSCs) to releas... more Introduction The US Food and Drug Administration uses drug safety communications (DSCs) to release emerging information regarding post-market safety issues, but it is unclear the extent of awareness by patients and providers of these communications and their specific recommendations. Objective We conducted semi-structured interviews with patients and physicians to evaluate their awareness and understanding of emerging drug safety information related to two sleep aids: zolpidem or eszopiclone. Methods We conducted interviews with 40 patients and ten physicians recruited from a combination of insurer claims databases and online sources. We evaluated (1) sources of drug safety information; (2) discussions between patients and physicians about the two medications; (3) their knowledge of the DSC; and (4) preferences for learning about future drug safety information. Interviews were transcribed and analyzed thematically. Results Patients cited their physicians, pharmacy inserts, and the Internet as sources of drug safety information. Physicians often referred to medical journals and online medical sources. Most patients reported being aware of information contained in the DSC summaries they were read. Almost all patients and physicians reported discussing side effects during patient-provider conversations, but almost no patients mentioned that physicians had communicated with them key messaging from the DSCs at issue: the risk of next-morning impairment with zolpidem and the lower recommended initial dose for women. Conclusions Some risks of medications are effectively communicated to patients and physicians; however, there is still a noticeable gap between information issued by the Food and Drug Administration and patient and physician awareness of this knowledge, as well as patients' decisions to act on this information. Disseminators of emerging drug safety information should explore ways of providing userfriendly resources to patients and healthcare professionals that can update them on new risks in a timely manner.
LITERATURE REVIEW Community Capacity Enhancement Traditionally, communities of color bave been co... more LITERATURE REVIEW Community Capacity Enhancement Traditionally, communities of color bave been considered "bard to reacb" for inclusion in health behavior change strategies (Black, Stein, Loveland-Cberry, 2001; Braithwite & Lythcott, 1989). and efforts to address population-specific needs have suffered from tbe lack of comprebensive planning and relied mostly on a deficit model to inform research and practice (Cbaskin,Josepb,& Chipenda-Dansokho. 1997; Morrison et al., 1997). The success of intervention strategies designed to bring about cbange in these populations depends on public engagement and community partnerships in both research and practice (Delgado, 2000; i6
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