Nataly Espinoza | Université Laval (original) (raw)

Papers by Nataly Espinoza

Research paper thumbnail of Collaborative Diagnostic Conversations Between Clinicians, Patients, and Their Families: A Way to Avoid Diagnostic Errors

Mayo Clinic Proceedings: Innovations, Quality & Outcomes

Research paper thumbnail of Prevención cuaternaria: Perspectivas desde el Primer nivel de Atención

Revista del Cuerpo Médico Hospital Nacional Almanzor Aguinaga Asenjo

Introducción: La práctica de la prevención cuaternaria lleva a evitar intervenciones sanitarias i... more Introducción: La práctica de la prevención cuaternaria lleva a evitar intervenciones sanitarias innecesarias. Objetivo: Evaluar la relevancia dada a los conceptos de prevención cuaternaria (P4), describir la influencia de entrenamiento en Medicina Basada en Evidencia su práctica y presentar las barreras y facilitadores de la práctica de la P4. El estudio: estudio de métodos mixtos durante 2018 y 2019. Se encuestaron 133 médicos que laboran en atención primaria y se realizaron entrevistas semi-estructuradas a 20 participantes. Se utilizó los principios de la fenomenología para el análisis de los transcritos. Hallazgos: 94% consideran importante la práctica de la P4. A partir de nuestras entrevistas se identificaron barreras y facilitadores para la práctica de la P4 en el primer nivel de atención. Conclusión: Los médicos consideran importante la práctica de la prevención cuaternaria. Las barreras y facilitadores relevantes son las características específicas del sistema sanitario, del...

Research paper thumbnail of Comparing Complication Rates of Midline Catheter vs Peripherally Inserted Central Catheter. A Systematic Review and Meta-analysis

Open Forum Infectious Diseases, Jan 18, 2023

Research paper thumbnail of Video-based observation research: A systematic review of studies in outpatient health care settings

Patient Education and Counseling

Research paper thumbnail of Impact of Cost Conversations During Clinical Encounters Aided by Shared Decision-Making Tools on Medication Adherence

Mayo Clinic Proceedings: Innovations, Quality & Outcomes, Aug 1, 2022

Objective: To investigate the impact of cost conversations occurring with or without the use of e... more Objective: To investigate the impact of cost conversations occurring with or without the use of encounter shared decision-making (SDM) tools in medication adherence. Patients and Methods: Using a coding scheme that included the occurrence and characteristics of cost conversation, we analyzed a randomly selected sample of 169 video recordings of clinical encounters. These videos were obtained during the conduct of practice-based randomized clinical trials comparing care with and without SDM tools for patients with diabetes, osteoporosis, and depression. Medication adherence was described in 2 ways: as a binary (yes/no) outcome, in which the patient met at least 80% adherence, or as a continuous variable, which was the percent of days that the patient adhered to their medication. The secondary analysis took place in 2018 from trials that ran between 2007 and 2015. Results: Most patients were White (155, 93.4%), educated (104, 63.4% completed college), middle-aged (mean age, 58 years), female (104, 61.5%), and from diabetes (86, 50.9%), depression (43, 25.4%), and osteoporosis (40, 23.7%) trials. Cost conversations occurred in 119 clinical encounters (70%) and were more frequent in those encounters in which SDM tools were used (P¼.03). Furthermore, 97 (57.4%) of the participants reported more than 80% medication adherence and 70.3AE29.34 percentage of days with adherent medication of 70 days. In the multiple regression model, the only factor associated with adherence (binary or continuous) was the condition of the trial in which people participated. For the participants who had cost conversations, the use of an SDM tool, their sex, the nature of cost conversation (direct or indirect), the nature of cost concerns (treatment or patient issue), and the clinician-offered strategies (yes or no) were not associated with adherence. Conclusion: In this videographic analysis of SDM practice-based clinical trials, cost conversations were not associated with the general measures of medication adherence. Future studies should assess whether a tailored cost conversation intervention would impact the cost-related nonadherence among patients.

Research paper thumbnail of ABLE to support patient financial capacity: A qualitative analysis of cost conversations in clinical encounters

Patient Education and Counseling

Research paper thumbnail of Global prevalence of antidepressant drug utilization in the community: protocol for a systematic review

BMJ Open

IntroductionAntidepressant drugs are the most frequently prescribed medication for mental disorde... more IntroductionAntidepressant drugs are the most frequently prescribed medication for mental disorders. They are also used off-label and for non-psychiatric indications. Prescriptions of antidepressants have increased in the last decades, but no systematic review exists on the extent of their use in the community.Methods and analysisWe will conduct a systematic review to estimate the prevalence of antidepressant use in the community. We will search for studies published from 1 January 2010 in the Embase and MEDLINE databases using a combination of controlled vocabulary and keywords adjusted for each database without any language restriction. The main inclusion criterion is the presence of prevalence data of antidepressant utilization. Thus, we will include all studies with a descriptive observational design reporting the prevalence of antidepressant use in the community. Study selection (by title/abstract and full-text screening) and data extraction for included studies will be indepen...

Research paper thumbnail of Interventions for End of Life Decision Making for Patients with Limited English Proficiency

Journal of Immigrant and Minority Health, 2019

Background: Patients with limited English proficiency (LEP) experience disparities in end-oflife ... more Background: Patients with limited English proficiency (LEP) experience disparities in end-oflife decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Methods: Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Results: Eight studies from the US and Australia were included (7 studies in Spanish and 1 study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Conclusion: Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.

Research paper thumbnail of Global prevalence of antidepressant utilization in the community: A protocol for a systematic review

Background Antidepressant drugs are the most frequently prescribed medication for mental disorder... more Background Antidepressant drugs are the most frequently prescribed medication for mental disorders. They are also used off-label and for non-psychiatric indications. Prescriptions of antidepressants have increased in the last decades, but no systematic review exists on the extent of their use in the community. Methods and analysis We will conduct a systematic review to estimate the prevalence of antidepressant use in the community. We will search for studies published from 2010 in the Embase and MEDLINE databases. Study selection (by title/abstract and full-text screening) and data extraction for included studies will be independently conducted by pairs of reviewers. We will then synthesize the data on the prevalence of antidepressant use in individuals living in the community. If possible, we will perform a meta-analysis to generate prevalence-pooled estimates. If the data allows it, we will conduct subgroup analyses by antidepressant class, age, sex, country or other sociodemograp...

Research paper thumbnail of sj-doc-1-mdm-10.1177_0272989X211005655 – Supplemental material for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Supplemental material, sj-doc-1-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools fo... more Supplemental material, sj-doc-1-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan by Victor D. Torres Roldan, Sarah R. Brand-McCarthy, Oscar J. Ponce, Tereza Belluzzo, Meritxell Urtecho, Nataly R. Espinoza Suarez, Freddy J. K. Toloza, Anjali D. Thota, Paige W. Organick, Francisco Barrera, Carolina Liu-Sanchez, Soumya Jaladi, Larry Prokop, Elissa M. Ozanne, Angela Fagerlin, Ian G. Hargraves, Peter A. Noseworthy, Victor M. Montori and Juan P. Brito in Medical Decision Making

Research paper thumbnail of sj-docx-2-mdm-10.1177_0272989X211005655 – Supplemental material for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Supplemental material, sj-docx-2-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools f... more Supplemental material, sj-docx-2-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan by Victor D. Torres Roldan, Sarah R. Brand-McCarthy, Oscar J. Ponce, Tereza Belluzzo, Meritxell Urtecho, Nataly R. Espinoza Suarez, Freddy J. K. Toloza, Anjali D. Thota, Paige W. Organick, Francisco Barrera, Carolina Liu-Sanchez, Soumya Jaladi, Larry Prokop, Elissa M. Ozanne, Angela Fagerlin, Ian G. Hargraves, Peter A. Noseworthy, Victor M. Montori and Juan P. Brito in Medical Decision Making

Research paper thumbnail of Additional file 5: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

DA effects. (DOCX 64Â kb)

Research paper thumbnail of Additional file 4: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

DA information. (DOCX 77Â kb)

Research paper thumbnail of Additional file 3: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

Risk of bias assessment. (DOCX 46Â kb)

Research paper thumbnail of Additional file 2: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

Search histories bibliographic databases. (DOCX 25Â kb)

Research paper thumbnail of Additional file 1: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

PRISMA checklist. (DOC 63Â kb)

Research paper thumbnail of Older Patients with Advanced Chronic Kidney Disease and Their Perspectives on Prognostic Information: a Qualitative Study

Journal of General Internal Medicine, 2022

Prognostic information is key to shared decision-making, particularly in life-limiting illness li... more Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). To understand the prognostic information preferences expressed by older patients with CKD. Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. Semi-structured telephone or in-person interviews to explore patients’ preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.

Research paper thumbnail of Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis

PLOS ONE, 2021

Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); th... more Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients’ insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden. Methods We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants’ treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles...

Research paper thumbnail of Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Medical Decision Making, 2021

Objective Shared decision making (SDM) tools can help implement guideline recommendations for pat... more Objective Shared decision making (SDM) tools can help implement guideline recommendations for patients with atrial fibrillation (AF) considering stroke prevention strategies. We sought to characterize all available SDM tools for this purpose and examine their quality and clinical impact. Methods We searched through multiple bibliographic databases, social media, and an SDM tool repository from inception to May 2020 and contacted authors of identified SDM tools. Eligible tools had to offer information about warfarin and ≥1 direct oral anticoagulant. We extracted tool characteristics, assessed their adherence to the International Patient Decision Aids Standards, and obtained information about their efficacy in promoting SDM. Results We found 14 SDM tools. Most tools provided up-to-date information about the options, but very few included practical considerations (e.g., out-of-pocket cost). Five of these SDM tools, all used by patients prior to the encounter, were tested in trials at h...

Research paper thumbnail of Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease

Proceedings of the ACM on Human-Computer Interaction, 2021

CSCW has previously investigated the "information work" that patients do in relation to... more CSCW has previously investigated the "information work" that patients do in relation to their health, illnesses, and treatments. Our study contributes to this ongoing stream of work by investigating the information work that chronically ill patients do in relation to their physical bodily experiences. We use an interpretivist approach and qualitative methods (semi-structured interviews and observations) to examine how patients in a midwestern U.S. city carry out information work related to their bodily experiences of Chronic Kidney Disease (CKD). Our findings highlight four themes related to such work: bodily experiences of CKD; making meaning of bodily experiences through experiential learning; communicating bodily experiences; and attuning daily life around bodily experiences. In so doing, we show how patients continuously engage in information work in relation to their bodily experiences. For example, we found participants experienced physical sensations such as pain, c...

Research paper thumbnail of Collaborative Diagnostic Conversations Between Clinicians, Patients, and Their Families: A Way to Avoid Diagnostic Errors

Mayo Clinic Proceedings: Innovations, Quality & Outcomes

Research paper thumbnail of Prevención cuaternaria: Perspectivas desde el Primer nivel de Atención

Revista del Cuerpo Médico Hospital Nacional Almanzor Aguinaga Asenjo

Introducción: La práctica de la prevención cuaternaria lleva a evitar intervenciones sanitarias i... more Introducción: La práctica de la prevención cuaternaria lleva a evitar intervenciones sanitarias innecesarias. Objetivo: Evaluar la relevancia dada a los conceptos de prevención cuaternaria (P4), describir la influencia de entrenamiento en Medicina Basada en Evidencia su práctica y presentar las barreras y facilitadores de la práctica de la P4. El estudio: estudio de métodos mixtos durante 2018 y 2019. Se encuestaron 133 médicos que laboran en atención primaria y se realizaron entrevistas semi-estructuradas a 20 participantes. Se utilizó los principios de la fenomenología para el análisis de los transcritos. Hallazgos: 94% consideran importante la práctica de la P4. A partir de nuestras entrevistas se identificaron barreras y facilitadores para la práctica de la P4 en el primer nivel de atención. Conclusión: Los médicos consideran importante la práctica de la prevención cuaternaria. Las barreras y facilitadores relevantes son las características específicas del sistema sanitario, del...

Research paper thumbnail of Comparing Complication Rates of Midline Catheter vs Peripherally Inserted Central Catheter. A Systematic Review and Meta-analysis

Open Forum Infectious Diseases, Jan 18, 2023

Research paper thumbnail of Video-based observation research: A systematic review of studies in outpatient health care settings

Patient Education and Counseling

Research paper thumbnail of Impact of Cost Conversations During Clinical Encounters Aided by Shared Decision-Making Tools on Medication Adherence

Mayo Clinic Proceedings: Innovations, Quality & Outcomes, Aug 1, 2022

Objective: To investigate the impact of cost conversations occurring with or without the use of e... more Objective: To investigate the impact of cost conversations occurring with or without the use of encounter shared decision-making (SDM) tools in medication adherence. Patients and Methods: Using a coding scheme that included the occurrence and characteristics of cost conversation, we analyzed a randomly selected sample of 169 video recordings of clinical encounters. These videos were obtained during the conduct of practice-based randomized clinical trials comparing care with and without SDM tools for patients with diabetes, osteoporosis, and depression. Medication adherence was described in 2 ways: as a binary (yes/no) outcome, in which the patient met at least 80% adherence, or as a continuous variable, which was the percent of days that the patient adhered to their medication. The secondary analysis took place in 2018 from trials that ran between 2007 and 2015. Results: Most patients were White (155, 93.4%), educated (104, 63.4% completed college), middle-aged (mean age, 58 years), female (104, 61.5%), and from diabetes (86, 50.9%), depression (43, 25.4%), and osteoporosis (40, 23.7%) trials. Cost conversations occurred in 119 clinical encounters (70%) and were more frequent in those encounters in which SDM tools were used (P¼.03). Furthermore, 97 (57.4%) of the participants reported more than 80% medication adherence and 70.3AE29.34 percentage of days with adherent medication of 70 days. In the multiple regression model, the only factor associated with adherence (binary or continuous) was the condition of the trial in which people participated. For the participants who had cost conversations, the use of an SDM tool, their sex, the nature of cost conversation (direct or indirect), the nature of cost concerns (treatment or patient issue), and the clinician-offered strategies (yes or no) were not associated with adherence. Conclusion: In this videographic analysis of SDM practice-based clinical trials, cost conversations were not associated with the general measures of medication adherence. Future studies should assess whether a tailored cost conversation intervention would impact the cost-related nonadherence among patients.

Research paper thumbnail of ABLE to support patient financial capacity: A qualitative analysis of cost conversations in clinical encounters

Patient Education and Counseling

Research paper thumbnail of Global prevalence of antidepressant drug utilization in the community: protocol for a systematic review

BMJ Open

IntroductionAntidepressant drugs are the most frequently prescribed medication for mental disorde... more IntroductionAntidepressant drugs are the most frequently prescribed medication for mental disorders. They are also used off-label and for non-psychiatric indications. Prescriptions of antidepressants have increased in the last decades, but no systematic review exists on the extent of their use in the community.Methods and analysisWe will conduct a systematic review to estimate the prevalence of antidepressant use in the community. We will search for studies published from 1 January 2010 in the Embase and MEDLINE databases using a combination of controlled vocabulary and keywords adjusted for each database without any language restriction. The main inclusion criterion is the presence of prevalence data of antidepressant utilization. Thus, we will include all studies with a descriptive observational design reporting the prevalence of antidepressant use in the community. Study selection (by title/abstract and full-text screening) and data extraction for included studies will be indepen...

Research paper thumbnail of Interventions for End of Life Decision Making for Patients with Limited English Proficiency

Journal of Immigrant and Minority Health, 2019

Background: Patients with limited English proficiency (LEP) experience disparities in end-oflife ... more Background: Patients with limited English proficiency (LEP) experience disparities in end-oflife decision making and advance care planning. Our objective was to conduct a systematic review to assess the literature about interventions addressing these issues. Methods: Our search strategy was built around end-of-life (EOL), LEP, ACP, and goals of care. The databases included Ovid MEDLINE(R), and Epub Ahead of Print, In-Process & Other Non-Indexed Citations and Daily from 1946 to November 9, 2018, Ovid EMBASE. Results: Eight studies from the US and Australia were included (7 studies in Spanish and 1 study in Greek and Italian). Interventions used trained personnel, video images, web-based programs, and written materials. Interventions were associated with increased advance directive completion and decreased preferences for some life-prolonging treatments. Interventions were deemed to be feasible and acceptable. Conclusion: Few interventions exist to improve end-of-life care for patients with LEP. Data are limited regarding intervention effectiveness.

Research paper thumbnail of Global prevalence of antidepressant utilization in the community: A protocol for a systematic review

Background Antidepressant drugs are the most frequently prescribed medication for mental disorder... more Background Antidepressant drugs are the most frequently prescribed medication for mental disorders. They are also used off-label and for non-psychiatric indications. Prescriptions of antidepressants have increased in the last decades, but no systematic review exists on the extent of their use in the community. Methods and analysis We will conduct a systematic review to estimate the prevalence of antidepressant use in the community. We will search for studies published from 2010 in the Embase and MEDLINE databases. Study selection (by title/abstract and full-text screening) and data extraction for included studies will be independently conducted by pairs of reviewers. We will then synthesize the data on the prevalence of antidepressant use in individuals living in the community. If possible, we will perform a meta-analysis to generate prevalence-pooled estimates. If the data allows it, we will conduct subgroup analyses by antidepressant class, age, sex, country or other sociodemograp...

Research paper thumbnail of sj-doc-1-mdm-10.1177_0272989X211005655 – Supplemental material for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Supplemental material, sj-doc-1-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools fo... more Supplemental material, sj-doc-1-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan by Victor D. Torres Roldan, Sarah R. Brand-McCarthy, Oscar J. Ponce, Tereza Belluzzo, Meritxell Urtecho, Nataly R. Espinoza Suarez, Freddy J. K. Toloza, Anjali D. Thota, Paige W. Organick, Francisco Barrera, Carolina Liu-Sanchez, Soumya Jaladi, Larry Prokop, Elissa M. Ozanne, Angela Fagerlin, Ian G. Hargraves, Peter A. Noseworthy, Victor M. Montori and Juan P. Brito in Medical Decision Making

Research paper thumbnail of sj-docx-2-mdm-10.1177_0272989X211005655 – Supplemental material for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Supplemental material, sj-docx-2-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools f... more Supplemental material, sj-docx-2-mdm-10.1177_0272989X211005655 for Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan by Victor D. Torres Roldan, Sarah R. Brand-McCarthy, Oscar J. Ponce, Tereza Belluzzo, Meritxell Urtecho, Nataly R. Espinoza Suarez, Freddy J. K. Toloza, Anjali D. Thota, Paige W. Organick, Francisco Barrera, Carolina Liu-Sanchez, Soumya Jaladi, Larry Prokop, Elissa M. Ozanne, Angela Fagerlin, Ian G. Hargraves, Peter A. Noseworthy, Victor M. Montori and Juan P. Brito in Medical Decision Making

Research paper thumbnail of Additional file 5: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

DA effects. (DOCX 64Â kb)

Research paper thumbnail of Additional file 4: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

DA information. (DOCX 77Â kb)

Research paper thumbnail of Additional file 3: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

Risk of bias assessment. (DOCX 46Â kb)

Research paper thumbnail of Additional file 2: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

Search histories bibliographic databases. (DOCX 25Â kb)

Research paper thumbnail of Additional file 1: of Decision aids that facilitate elements of shared decision making in chronic illnesses: a systematic review

PRISMA checklist. (DOC 63Â kb)

Research paper thumbnail of Older Patients with Advanced Chronic Kidney Disease and Their Perspectives on Prognostic Information: a Qualitative Study

Journal of General Internal Medicine, 2022

Prognostic information is key to shared decision-making, particularly in life-limiting illness li... more Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). To understand the prognostic information preferences expressed by older patients with CKD. Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. Semi-structured telephone or in-person interviews to explore patients’ preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.

Research paper thumbnail of Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis

PLOS ONE, 2021

Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); th... more Background Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients’ insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden. Methods We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants’ treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles...

Research paper thumbnail of Shared Decision Making Tools for People Facing Stroke Prevention Strategies in Atrial Fibrillation: A Systematic Review and Environmental Scan

Medical Decision Making, 2021

Objective Shared decision making (SDM) tools can help implement guideline recommendations for pat... more Objective Shared decision making (SDM) tools can help implement guideline recommendations for patients with atrial fibrillation (AF) considering stroke prevention strategies. We sought to characterize all available SDM tools for this purpose and examine their quality and clinical impact. Methods We searched through multiple bibliographic databases, social media, and an SDM tool repository from inception to May 2020 and contacted authors of identified SDM tools. Eligible tools had to offer information about warfarin and ≥1 direct oral anticoagulant. We extracted tool characteristics, assessed their adherence to the International Patient Decision Aids Standards, and obtained information about their efficacy in promoting SDM. Results We found 14 SDM tools. Most tools provided up-to-date information about the options, but very few included practical considerations (e.g., out-of-pocket cost). Five of these SDM tools, all used by patients prior to the encounter, were tested in trials at h...

Research paper thumbnail of Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease

Proceedings of the ACM on Human-Computer Interaction, 2021

CSCW has previously investigated the "information work" that patients do in relation to... more CSCW has previously investigated the "information work" that patients do in relation to their health, illnesses, and treatments. Our study contributes to this ongoing stream of work by investigating the information work that chronically ill patients do in relation to their physical bodily experiences. We use an interpretivist approach and qualitative methods (semi-structured interviews and observations) to examine how patients in a midwestern U.S. city carry out information work related to their bodily experiences of Chronic Kidney Disease (CKD). Our findings highlight four themes related to such work: bodily experiences of CKD; making meaning of bodily experiences through experiential learning; communicating bodily experiences; and attuning daily life around bodily experiences. In so doing, we show how patients continuously engage in information work in relation to their bodily experiences. For example, we found participants experienced physical sensations such as pain, c...