James Tulsky - Academia.edu (original) (raw)
Papers by James Tulsky
Annals of Internal Medicine, 2010
Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is kn... more Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is known about the patterns of care as patients transition from acute care hospitals to postacute care facilities or about the associated resource utilization. To describe 1-year trajectories of care and resource utilization for patients receiving prolonged mechanical ventilation. 1-year prospective cohort study. 5 intensive care units at Duke University Medical Center, Durham, North Carolina. 126 patients receiving prolonged mechanical ventilation (defined as ventilation for >or=4 days with tracheostomy placement or ventilation for >or=21 days without tracheostomy), as well as their 126 surrogates and 54 intensive care unit physicians, enrolled consecutively over 1 year. Patients and surrogates were interviewed in the hospital, as well as 3 and 12 months after discharge, to determine patient survival, functional status, and facility type and duration of postdischarge care. Physicians were interviewed in the hospital to elicit prognoses. Institutional billing records were used to assign costs for acute care, outpatient care, and interfacility transportation. Medicare claims data were used to assign costs for postacute care. 103 (82%) hospital survivors had 457 separate transitions in postdischarge care location (median, 4 transitions [interquartile range, 3 to 5 transitions]), including 68 patients (67%) who were readmitted at least once. Patients spent an average of 74% (95% CI, 68% to 80%) of all days alive in a hospital or postacute care facility or receiving home health care. At 1 year, 11 patients (9%) had a good outcome (alive with no functional dependency), 33 (26%) had a fair outcome (alive with moderate dependency), and 82 (65%) had a poor outcome (either alive with complete functional dependency [4 patients; 21%] or dead [56 patients; 44%]). Patients with poor outcomes were older, had more comorbid conditions, and were more frequently discharged to a postacute care facility than patients with either fair or good outcomes (P < 0.05 for all). The mean cost per patient was 306,135(SD,306,135 (SD, 306,135(SD,285,467), and total cohort cost was 38.1million,foranestimated38.1 million, for an estimated 38.1million,foranestimated3.5 million per independently functioning survivor at 1 year. The results of this single-center study may not be applicable to other centers. Patients receiving prolonged mechanical ventilation have multiple transitions of care, resulting in substantial health care costs and persistent, profound disability. The optimism of surrogate decision makers should be balanced by discussions of these outcomes when considering a course of prolonged life support. None.
Supportive Care in Cancer, 2011
Purpose Patients with advanced cancer often experience negative emotion; clinicians' empathic res... more Purpose Patients with advanced cancer often experience negative emotion; clinicians' empathic responses can alleviate patient distress. Much is known about how physicians respond to patient emotion; less is known about non-physician clinicians. Given that oncology care is increasingly provided by an interdisciplinary team, it is important to know more about how patients with advanced cancer express emotions to non-physician clinicians (NPCs) and how NPCs respond to those empathic opportunities. Method We audio recorded conversations between nonphysician clinicians and patients with advanced cancer. We analyzed 45 conversations between patients and oncology physician assistants, nurse practitioners, and nurse clinicians in which patients or their loved ones expressed at least one negative emotion to the NPC (i.e., an empathic opportunity). Empathic opportunities were coded three contribute to improved communication training for NPCs and, ultimately, to higher quality patient care in cancer.
Journal of Palliative Medicine, 2014
Background: Communication with patients and families is an essential component of high-quality ca... more Background: Communication with patients and families is an essential component of high-quality care in serious illness. Small-group skills training can result in new communication behaviors, but past studies have used facilitators with extensive experience, raising concerns this is not scalable. Objective: The objective was to investigate the effect of an experiential communication skills building workshop (Codetalk), led by newly trained facilitators, on internal medicine trainees' and nurse practitioner students' ability to communicate bad news and express empathy. Design: Trainees participated in Codetalk; skill improvement was evaluated through pre-and post-standardized patient (SP) encounters. Setting and subjects: The subjects were internal medicine residents and nurse practitioner students at two universities. Intervention and measurements: The study was carried out in anywhere from five to eight half-day sessions over a month. The first and last sessions included audiotaped trainee SP encounters coded for effective communication behaviors. The primary outcome was change in communication scores from pre-intervention to postintervention. We also measured trainee characteristics to identify predictors of performance and change in performance over time. Results: We enrolled 145 trainees who completed pre-and post-intervention SP interviews-with participation rates of 52% for physicians and 14% for nurse practitioners. Trainees' scores improved in 8 of 11 coded behaviors ( p < 0.05). The only significant predictors of performance were having participated in the intervention ( p < 0.001) and study site ( p < 0.003). The only predictor of improvement in performance over time was participating in the intervention ( p < 0.001). Conclusions: A communication skills intervention using newly trained facilitators was associated with improvement in trainees' skills in giving bad news and expressing empathy. Improvement in communication skills did not vary by trainee characteristics.
The Journal of family practice, 2011
Combining nutrition, physical activity, and weight loss advice may help patients reduce fat intak... more Combining nutrition, physical activity, and weight loss advice may help patients reduce fat intake. Focusing solely on exercise may actually lead to weight gain.
Clinical pediatrics, Jan 9, 2015
Physicians can help guide teenagers in their emerging sexuality; however, teens rarely inform phy... more Physicians can help guide teenagers in their emerging sexuality; however, teens rarely inform physicians about their sexual activity. We audio-recorded annual visits between 365 teenagers and 49 physicians. Before the recorded visit, the teens were asked in a confidential telephone survey whether they had ever engaged in sexual intercourse. Recordings were coded for teenage disclosures about previous sexual intercourse. We measured agreement between telephone survey responses and annual visit disclosures, and examined factors associated with agreement between the two. Fifty-six teenagers (15%) reported previous sexual intercourse in either the telephone survey or to their physician. Among those who reported sexual intercourse, 57% shared this information to both the telephone survey and their physician (κ = .72, confidence interval = 0.63-0.82). Although a slight majority of teenagers disclosed their sexual activity to both the telephone survey and their doctor, a significant number...
Journal of oncology practice / American Society of Clinical Oncology, Jan 31, 2015
Palliative medicine, 2006
In order to improve the state of science in palliative care, we must increase our ability to docu... more In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions. To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers. A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEFB < 40 or advanced chronic obstructive pulmonary disease (COPD) pCO(2) > 46, and their caregivers, interviewed mo...
Journal of oncology practice / American Society of Clinical Oncology, 2014
Little is known about the association between patient-oncologist discussion of cancer treatment o... more Little is known about the association between patient-oncologist discussion of cancer treatment out-of-pocket (OOP) cost and medication adherence, a critical component of quality cancer care. We surveyed insured adults receiving anticancer therapy. Patients were asked if they had discussed OOP cost with their oncologist. Medication nonadherence was defined as skipping doses or taking less medication than prescribed to make prescriptions last longer, or not filling prescriptions because of cost. Multivariable analysis assessed the association between nonadherence and cost discussions. Among 300 respondents (86% response), 16% (n = 49) reported high or overwhelming financial distress. Nineteen percent (n = 56) reported talking to their oncologist about cost. Twenty-seven percent (n = 77) reported medication nonadherence. To make a prescription last longer, 14% (n = 42) skipped medication doses, and 11% (n = 33) took less medication than prescribed; 22% (n = 66) did not fill a prescrip...
Palliative medicine, 2006
Most oncologists have not received adequate training in physician-patient communication, and exis... more Most oncologists have not received adequate training in physician-patient communication, and existing effective courses tend to be time and resource intensive. We are developing and testing a tailored CD-ROM educational intervention that includes feedback on oncologists' own audio-recorded conversations with their advanced cancer patients. In this report, we describe the study methods and identify challenges to implementation and how these were overcome. A three-phase, randomized, controlled trial. In Phase 1, we audio-recorded oncologist-patient clinic encounters. In Phase 2, oncologists were randomly assigned to a communication CD-ROM intervention or control. Phase 3 consisted of audio-recording all participating oncologists conversing with a new sample of patients, two to 12 months after the intervention, to assess its effectiveness. Oncology clinics at Duke University Medical Center (DUMC) and the Durham Veterans Affairs Medical Center (DVAMC) in Durham, NC, and the Universi...
Preventive medicine, 2010
JAMA pediatrics, 2014
Physicians may be important sources of sexuality information and preventive services, and one-on-... more Physicians may be important sources of sexuality information and preventive services, and one-on-one confidential time during health maintenance visits is recommended to allow discussions of sexual development, behavior, and risk reduction. However, little is known about the occurrence and characteristics of physician-adolescent discussions about sexuality. To examine predictors of time spent discussing sexuality, level of adolescent participation, and physician and patient characteristics associated with sexuality discussions during health maintenance visits by early and middle adolescents. Observational study of audio-recorded conversations between 253 adolescents (mean age, 14.3 years; 53% female; 40% white; 47% African American) and 49 physicians (82% pediatricians; 84% white; 65% female; mean age, 40.9 years; mean [SD] duration in practice, 11.8 [8.7] years) coded for sexuality content at 11 clinics (3 academic and 8 community-based practices) located throughout the Raleigh/Dur...
Journal of pain and symptom management, 2014
Family members of seriously ill patients experience significant burden as they advocate with prov... more Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is central to comprehensive care. This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care. We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability. The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Furth...
Palliative & supportive care, Jan 8, 2014
Objective: Most palliative care efforts focus on assessing and improving the quality of life and ... more Objective: Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients. Method: We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic me...
Social Science & Medicine, 2007
Hospices have been expected to reduce health expenditures since their addition to the US Medicare... more Hospices have been expected to reduce health expenditures since their addition to the US Medicare benefit package in the early-1980s, but the literature on their ability to do so is mixed. The contradictory findings noted in previous studies may be due to selection bias and the period of cost comparison used. Accounting for these, this study focuses on the length
Fulfillment of patients' expectations may influence health care utilization, affect patie... more Fulfillment of patients' expectations may influence health care utilization, affect patient satisfaction, and be used to indicate quality of care. Several different instruments have been used to measure expectations, yet little is known about how different assessment methods affect outcomes. The object of the study was to determine whether different measurement instruments elicit different numbers and types of expectations and different levels of patient satisfaction. Patients waiting to see their physician were randomly assigned to receive 1 of 2 commonly used instruments assessing expectations or were assigned to a third (control) group that was not asked about expectations. After the visit, patients in all 3 groups were asked about their satisfaction and services they received. The study subjects were 290 male, primary care outpatients in a VA general medicine clinic. A "short" instrument asked about 3 general expectations for tests, referrals, and new medications, while a "long" instrument nested similar questions within a more detailed list. Wording also differed between the 2 instruments. The short instrument asked patients what they wanted; the long instrument asked patients what they thought was necessary for the physician to do. Satisfaction was measured with a visit-specific questionnaire and a more general assessment of physician interpersonal skills. Patients receiving the long instrument were more likely to express expectations for tests (83% vs. 28%, P <0.001), referrals (40% vs. 18%, P <0.001), and new medications (45% vs. 28%, P <0.001). The groups differed in the number of unmet expectations: 40% of the long instrument group reported at least 1 unmet expectation compared with 19% of the short instrument group (P <0.001). Satisfaction was similar among the 3 groups. These different instruments elicit different numbers of expectations but do not affect patient satisfaction.
Patient Education and Counseling, 2011
Objective-Examine primary care physicians' use of counseling techniques when treating overweight ... more Objective-Examine primary care physicians' use of counseling techniques when treating overweight and obese patients and the association with mediators of behavior change as well as change in nutrition, exercise, and weight loss attempts.
American heart journal, 2014
The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life... more The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF. PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritu...
Clinical Pediatrics, 2015
Annals of Internal Medicine, 2010
Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is kn... more Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is known about the patterns of care as patients transition from acute care hospitals to postacute care facilities or about the associated resource utilization. To describe 1-year trajectories of care and resource utilization for patients receiving prolonged mechanical ventilation. 1-year prospective cohort study. 5 intensive care units at Duke University Medical Center, Durham, North Carolina. 126 patients receiving prolonged mechanical ventilation (defined as ventilation for &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;or=4 days with tracheostomy placement or ventilation for &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;or=21 days without tracheostomy), as well as their 126 surrogates and 54 intensive care unit physicians, enrolled consecutively over 1 year. Patients and surrogates were interviewed in the hospital, as well as 3 and 12 months after discharge, to determine patient survival, functional status, and facility type and duration of postdischarge care. Physicians were interviewed in the hospital to elicit prognoses. Institutional billing records were used to assign costs for acute care, outpatient care, and interfacility transportation. Medicare claims data were used to assign costs for postacute care. 103 (82%) hospital survivors had 457 separate transitions in postdischarge care location (median, 4 transitions [interquartile range, 3 to 5 transitions]), including 68 patients (67%) who were readmitted at least once. Patients spent an average of 74% (95% CI, 68% to 80%) of all days alive in a hospital or postacute care facility or receiving home health care. At 1 year, 11 patients (9%) had a good outcome (alive with no functional dependency), 33 (26%) had a fair outcome (alive with moderate dependency), and 82 (65%) had a poor outcome (either alive with complete functional dependency [4 patients; 21%] or dead [56 patients; 44%]). Patients with poor outcomes were older, had more comorbid conditions, and were more frequently discharged to a postacute care facility than patients with either fair or good outcomes (P &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.05 for all). The mean cost per patient was 306,135(SD,306,135 (SD, 306,135(SD,285,467), and total cohort cost was 38.1million,foranestimated38.1 million, for an estimated 38.1million,foranestimated3.5 million per independently functioning survivor at 1 year. The results of this single-center study may not be applicable to other centers. Patients receiving prolonged mechanical ventilation have multiple transitions of care, resulting in substantial health care costs and persistent, profound disability. The optimism of surrogate decision makers should be balanced by discussions of these outcomes when considering a course of prolonged life support. None.
Supportive Care in Cancer, 2011
Purpose Patients with advanced cancer often experience negative emotion; clinicians' empathic res... more Purpose Patients with advanced cancer often experience negative emotion; clinicians' empathic responses can alleviate patient distress. Much is known about how physicians respond to patient emotion; less is known about non-physician clinicians. Given that oncology care is increasingly provided by an interdisciplinary team, it is important to know more about how patients with advanced cancer express emotions to non-physician clinicians (NPCs) and how NPCs respond to those empathic opportunities. Method We audio recorded conversations between nonphysician clinicians and patients with advanced cancer. We analyzed 45 conversations between patients and oncology physician assistants, nurse practitioners, and nurse clinicians in which patients or their loved ones expressed at least one negative emotion to the NPC (i.e., an empathic opportunity). Empathic opportunities were coded three contribute to improved communication training for NPCs and, ultimately, to higher quality patient care in cancer.
Journal of Palliative Medicine, 2014
Background: Communication with patients and families is an essential component of high-quality ca... more Background: Communication with patients and families is an essential component of high-quality care in serious illness. Small-group skills training can result in new communication behaviors, but past studies have used facilitators with extensive experience, raising concerns this is not scalable. Objective: The objective was to investigate the effect of an experiential communication skills building workshop (Codetalk), led by newly trained facilitators, on internal medicine trainees' and nurse practitioner students' ability to communicate bad news and express empathy. Design: Trainees participated in Codetalk; skill improvement was evaluated through pre-and post-standardized patient (SP) encounters. Setting and subjects: The subjects were internal medicine residents and nurse practitioner students at two universities. Intervention and measurements: The study was carried out in anywhere from five to eight half-day sessions over a month. The first and last sessions included audiotaped trainee SP encounters coded for effective communication behaviors. The primary outcome was change in communication scores from pre-intervention to postintervention. We also measured trainee characteristics to identify predictors of performance and change in performance over time. Results: We enrolled 145 trainees who completed pre-and post-intervention SP interviews-with participation rates of 52% for physicians and 14% for nurse practitioners. Trainees' scores improved in 8 of 11 coded behaviors ( p < 0.05). The only significant predictors of performance were having participated in the intervention ( p < 0.001) and study site ( p < 0.003). The only predictor of improvement in performance over time was participating in the intervention ( p < 0.001). Conclusions: A communication skills intervention using newly trained facilitators was associated with improvement in trainees' skills in giving bad news and expressing empathy. Improvement in communication skills did not vary by trainee characteristics.
The Journal of family practice, 2011
Combining nutrition, physical activity, and weight loss advice may help patients reduce fat intak... more Combining nutrition, physical activity, and weight loss advice may help patients reduce fat intake. Focusing solely on exercise may actually lead to weight gain.
Clinical pediatrics, Jan 9, 2015
Physicians can help guide teenagers in their emerging sexuality; however, teens rarely inform phy... more Physicians can help guide teenagers in their emerging sexuality; however, teens rarely inform physicians about their sexual activity. We audio-recorded annual visits between 365 teenagers and 49 physicians. Before the recorded visit, the teens were asked in a confidential telephone survey whether they had ever engaged in sexual intercourse. Recordings were coded for teenage disclosures about previous sexual intercourse. We measured agreement between telephone survey responses and annual visit disclosures, and examined factors associated with agreement between the two. Fifty-six teenagers (15%) reported previous sexual intercourse in either the telephone survey or to their physician. Among those who reported sexual intercourse, 57% shared this information to both the telephone survey and their physician (κ = .72, confidence interval = 0.63-0.82). Although a slight majority of teenagers disclosed their sexual activity to both the telephone survey and their doctor, a significant number...
Journal of oncology practice / American Society of Clinical Oncology, Jan 31, 2015
Palliative medicine, 2006
In order to improve the state of science in palliative care, we must increase our ability to docu... more In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions. To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers. A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEFB < 40 or advanced chronic obstructive pulmonary disease (COPD) pCO(2) > 46, and their caregivers, interviewed mo...
Journal of oncology practice / American Society of Clinical Oncology, 2014
Little is known about the association between patient-oncologist discussion of cancer treatment o... more Little is known about the association between patient-oncologist discussion of cancer treatment out-of-pocket (OOP) cost and medication adherence, a critical component of quality cancer care. We surveyed insured adults receiving anticancer therapy. Patients were asked if they had discussed OOP cost with their oncologist. Medication nonadherence was defined as skipping doses or taking less medication than prescribed to make prescriptions last longer, or not filling prescriptions because of cost. Multivariable analysis assessed the association between nonadherence and cost discussions. Among 300 respondents (86% response), 16% (n = 49) reported high or overwhelming financial distress. Nineteen percent (n = 56) reported talking to their oncologist about cost. Twenty-seven percent (n = 77) reported medication nonadherence. To make a prescription last longer, 14% (n = 42) skipped medication doses, and 11% (n = 33) took less medication than prescribed; 22% (n = 66) did not fill a prescrip...
Palliative medicine, 2006
Most oncologists have not received adequate training in physician-patient communication, and exis... more Most oncologists have not received adequate training in physician-patient communication, and existing effective courses tend to be time and resource intensive. We are developing and testing a tailored CD-ROM educational intervention that includes feedback on oncologists' own audio-recorded conversations with their advanced cancer patients. In this report, we describe the study methods and identify challenges to implementation and how these were overcome. A three-phase, randomized, controlled trial. In Phase 1, we audio-recorded oncologist-patient clinic encounters. In Phase 2, oncologists were randomly assigned to a communication CD-ROM intervention or control. Phase 3 consisted of audio-recording all participating oncologists conversing with a new sample of patients, two to 12 months after the intervention, to assess its effectiveness. Oncology clinics at Duke University Medical Center (DUMC) and the Durham Veterans Affairs Medical Center (DVAMC) in Durham, NC, and the Universi...
Preventive medicine, 2010
JAMA pediatrics, 2014
Physicians may be important sources of sexuality information and preventive services, and one-on-... more Physicians may be important sources of sexuality information and preventive services, and one-on-one confidential time during health maintenance visits is recommended to allow discussions of sexual development, behavior, and risk reduction. However, little is known about the occurrence and characteristics of physician-adolescent discussions about sexuality. To examine predictors of time spent discussing sexuality, level of adolescent participation, and physician and patient characteristics associated with sexuality discussions during health maintenance visits by early and middle adolescents. Observational study of audio-recorded conversations between 253 adolescents (mean age, 14.3 years; 53% female; 40% white; 47% African American) and 49 physicians (82% pediatricians; 84% white; 65% female; mean age, 40.9 years; mean [SD] duration in practice, 11.8 [8.7] years) coded for sexuality content at 11 clinics (3 academic and 8 community-based practices) located throughout the Raleigh/Dur...
Journal of pain and symptom management, 2014
Family members of seriously ill patients experience significant burden as they advocate with prov... more Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is central to comprehensive care. This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care. We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability. The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Furth...
Palliative & supportive care, Jan 8, 2014
Objective: Most palliative care efforts focus on assessing and improving the quality of life and ... more Objective: Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients. Method: We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic me...
Social Science & Medicine, 2007
Hospices have been expected to reduce health expenditures since their addition to the US Medicare... more Hospices have been expected to reduce health expenditures since their addition to the US Medicare benefit package in the early-1980s, but the literature on their ability to do so is mixed. The contradictory findings noted in previous studies may be due to selection bias and the period of cost comparison used. Accounting for these, this study focuses on the length
Fulfillment of patients' expectations may influence health care utilization, affect patie... more Fulfillment of patients' expectations may influence health care utilization, affect patient satisfaction, and be used to indicate quality of care. Several different instruments have been used to measure expectations, yet little is known about how different assessment methods affect outcomes. The object of the study was to determine whether different measurement instruments elicit different numbers and types of expectations and different levels of patient satisfaction. Patients waiting to see their physician were randomly assigned to receive 1 of 2 commonly used instruments assessing expectations or were assigned to a third (control) group that was not asked about expectations. After the visit, patients in all 3 groups were asked about their satisfaction and services they received. The study subjects were 290 male, primary care outpatients in a VA general medicine clinic. A "short" instrument asked about 3 general expectations for tests, referrals, and new medications, while a "long" instrument nested similar questions within a more detailed list. Wording also differed between the 2 instruments. The short instrument asked patients what they wanted; the long instrument asked patients what they thought was necessary for the physician to do. Satisfaction was measured with a visit-specific questionnaire and a more general assessment of physician interpersonal skills. Patients receiving the long instrument were more likely to express expectations for tests (83% vs. 28%, P <0.001), referrals (40% vs. 18%, P <0.001), and new medications (45% vs. 28%, P <0.001). The groups differed in the number of unmet expectations: 40% of the long instrument group reported at least 1 unmet expectation compared with 19% of the short instrument group (P <0.001). Satisfaction was similar among the 3 groups. These different instruments elicit different numbers of expectations but do not affect patient satisfaction.
Patient Education and Counseling, 2011
Objective-Examine primary care physicians' use of counseling techniques when treating overweight ... more Objective-Examine primary care physicians' use of counseling techniques when treating overweight and obese patients and the association with mediators of behavior change as well as change in nutrition, exercise, and weight loss attempts.
American heart journal, 2014
The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life... more The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF. PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritu...
Clinical Pediatrics, 2015