Alice A. Gaughan
Current Organizations / Institutes
The organizations/institutes from the scholar's latest article
Alice A. Gaughan has a total of 76 co-authors. Here are the top co-authors by number of shared publications:
- Ann Scheck McAlearney
Department of Family and Community Medicine College of Medicine The Ohio State University Columbus Ohio USA
22 shared publications - Laura J. Rush
The Center for the Advancement of Team Science, Analytics, and Systems Thinking in Health Services and Implementation Science Research (CATALYST), College of Medicine, The Ohio State University, Columbus, OH 43210, USA
12 shared publications - Sarah R. MacEwan
Division of General Internal Medicine, College of Medicine OSU Wexner Medical Center Columbus Ohio USA
10 shared publications - Megan E. Gregory
Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, USA
5 shared publications - Timothy R. Huerta
College of Medicine, The Ohio State University, Columbus, USA
5 shared publications - Ashish R. Panchal
National Registry of Emergency Medical Technicians
4 shared publications
Latest Publications
- Open Access
- 24 September 2026
- Published by JMIR Publications Inc. in JMIR Formative Research
- Vol. 10, e95948
Patient Experiences With a Symptom Monitoring and Self-Referral Program for Specialty Palliative Care After Lung Cancer Diagnosis: Qualitative Study
Background: Palliative care improves patients’ health-related quality of life (HRQoL) by delivering specialty-level management for cancer symptoms. Digital symptom monitoring programs (SMPs) improve patients’ HRQoL through early symptom identification during cancer care. Through complementary approaches, SMPs and palliative care align with symptom management theory by linking the patient-reported symptom experience with clinician recommendations for symptom management to improve health outcomes for patients with serious illness. While both SMPs and palliative care reduce health care use and improve survival through detection and treatment of cancer symptoms, few studies have attempted to integrate palliative care into SMPs for cancer symptom management. Objective: This study aimed to assess patients’ perspectives about the feasibility and acceptability of an SMP with a prompted palliative care self-referral option (Symptom Monitoring Program Linked to Electronic Referrals [SyMPLER]) via a mobile health (mHealth) app during lung cancer treatment. Methods: This is a single-institution qualitative study of patients newly diagnosed with lung cancer who were enrolled in a single-arm feasibility pilot of an mHealth app that facilitates on-demand reporting of cancer-related symptoms and prompts patients to self-refer to palliative care for symptom management. Interview participants were purposively sampled based on high (≥3 uses) vs low (0-2 uses) engagement with the app during the first 3 months of access to the SMP. Questions focused on program feasibility and acceptability as well as perceptions of the 5 components of the SMP intervention (introduction to palliative care, reminders, symptom reporting, palliative care self-referral, and oncology team callback). Interviews were conducted from May 2024 to May 2025 by telephone, recorded, transcribed, and analyzed using thematic analysis. Results: A total of 31 patients were interviewed; 21 had high and 10 had low app engagement. Participants were mostly White (n=29, 93.5%), female (n=21, 67.7%), and aged 60 years or older (n=19, 61.3%). In high and low engagement groups, participants voiced willingness and ability to report symptoms through the app and self-refer to palliative care if needed for symptom management. Feasibility barriers differed by group, with high-engagement participants noting forgetting to use the app for symptom reporting, while low-engagement participants cited low symptom burden, technology concerns, and time constraints as reasons for limited use of the SMP. Participants described uncertainty about when or why to request palliative care as a major barrier to self-referral. Conclusions: Participants’ perspectives on the feasibility and acceptability of SyMPLER differed by their level of engagement with the SMP app. Participants in both groups voiced acceptance of the option to self-refer to palliative care, although feasibility was limited by low uptake of palliative care self-referral. Participants suggested improvements to educational outreach, digital accessibility, customizable reminders, and recommendations for help-seeking behaviors based on symptom scoring thresholds to improve patient engagement with iterations of this SMP intervention.
- 24 September 2026
- Published by JMIR Publications Inc. in JMIR Formative Research
- Vol. 10, e95948
Open AccessPatient Experiences With a Symptom Monitoring and Self-Referral Program for Specialty Palliative Care After Lung Cancer Diagnosis: Qualitative Study
Background: Palliative care improves patients’ health-related quality of life (HRQoL) by delivering specialty-level management for cancer symptoms. Digital symptom monitoring programs (SMPs) improve patients’ HRQoL through early symptom identification during cancer care. Through complementary approaches, SMPs and palliative care align with symptom management theory by linking the patient-reported symptom experience with clinician recommendations for symptom management to improve health outcomes for patients with serious illness. While both SMPs and palliative care reduce health care use and improve survival through detection and treatment of cancer symptoms, few studies have attempted to integrate palliative care into SMPs for cancer symptom management. Objective: This study aimed to assess patients’ perspectives about the feasibility and acceptability of an SMP with a prompted palliative care self-referral option (Symptom Monitoring Program Linked to Electronic Referrals [SyMPLER]) via a mobile health (mHealth) app during lung cancer treatment. Methods: This is a single-institution qualitative study of patients newly diagnosed with lung cancer who were enrolled in a single-arm feasibility pilot of an mHealth app that facilitates on-demand reporting of cancer-related symptoms and prompts patients to self-refer to palliative care for symptom management. Interview participants were purposively sampled based on high (≥3 uses) vs low (0-2 uses) engagement with the app during the first 3 months of access to the SMP. Questions focused on program feasibility and acceptability as well as perceptions of the 5 components of the SMP intervention (introduction to palliative care, reminders, symptom reporting, palliative care self-referral, and oncology team callback). Interviews were conducted from May 2024 to May 2025 by telephone, recorded, transcribed, and analyzed using thematic analysis. Results: A total of 31 patients were interviewed; 21 had high and 10 had low app engagement. Participants were mostly White (n=29, 93.5%), female (n=21, 67.7%), and aged 60 years or older (n=19, 61.3%). In high and low engagement groups, participants voiced willingness and ability to report symptoms through the app and self-refer to palliative care if needed for symptom management. Feasibility barriers differed by group, with high-engagement participants noting forgetting to use the app for symptom reporting, while low-engagement participants cited low symptom burden, technology concerns, and time constraints as reasons for limited use of the SMP. Participants described uncertainty about when or why to request palliative care as a major barrier to self-referral. Conclusions: Participants’ perspectives on the feasibility and acceptability of SyMPLER differed by their level of engagement with the SMP app. Participants in both groups voiced acceptance of the option to self-refer to palliative care, although feasibility was limited by low uptake of palliative care self-referral. Participants suggested improvements to educational outreach, digital accessibility, customizable reminders, and recommendations for help-seeking behaviors based on symptom scoring thresholds to improve patient engagement with iterations of this SMP intervention.
- Open Access
- 24 March 2026
- Published by JMIR Publications Inc. in JMIR Preprints
Patient Experiences With a Symptom Monitoring and Self-Referral Program for Specialty Palliative Care After Lung Cancer Diagnosis: Qualitative Study (Preprint)
BACKGROUND Palliative care improves patients’ health-related quality of life (HRQoL) by delivering specialty-level management for cancer symptoms. Digital symptom monitoring programs (SMPs) improve patients’ HRQoL through early symptom identification during cancer care. Through complementary approaches, SMPs and palliative care align with symptom management theory by linking the patient-reported symptom experience with clinician recommendations for symptom management to improve health outcomes for patients with serious illness. While both SMPs and palliative care reduce health care use and improve survival through detection and treatment of cancer symptoms, few studies have attempted to integrate palliative care into SMPs for cancer symptom management. OBJECTIVE This study aimed to assess patients’ perspectives about the feasibility and acceptability of an SMP with a prompted palliative care self-referral option (Symptom Monitoring Program Linked to Electronic Referrals [SyMPLER]) via a mobile health (mHealth) app during lung cancer treatment. METHODS This is a single-institution qualitative study of patients newly diagnosed with lung cancer who were enrolled in a single-arm feasibility pilot of an mHealth app that facilitates on-demand reporting of cancer-related symptoms and prompts patients to self-refer to palliative care for symptom management. Interview participants were purposively sampled based on high (≥3 uses) vs low (0-2 uses) engagement with the app during the first 3 months of access to the SMP. Questions focused on program feasibility and acceptability as well as perceptions of the 5 components of the SMP intervention (introduction to palliative care, reminders, symptom reporting, palliative care self-referral, and oncology team callback). Interviews were conducted from May 2024 to May 2025 by telephone, recorded, transcribed, and analyzed using thematic analysis. RESULTS A total of 31 patients were interviewed; 21 had high and 10 had low app engagement. Participants were mostly White (n=29, 93.5%), female (n=21, 67.7%), and aged 60 years or older (n=19, 61.3%). In high and low engagement groups, participants voiced willingness and ability to report symptoms through the app and self-refer to palliative care if needed for symptom management. Feasibility barriers differed by group, with high-engagement participants noting forgetting to use the app for symptom reporting, while low-engagement participants cited low symptom burden, technology concerns, and time constraints as reasons for limited use of the SMP. Participants described uncertainty about when or why to request palliative care as a major barrier to self-referral. CONCLUSIONS Participants’ perspectives on the feasibility and acceptability of SyMPLER differed by their level of engagement with the SMP app. Participants in both groups voiced acceptance of the option to self-refer to palliative care, although feasibility was limited by low uptake of palliative care self-referral. Participants suggested improvements to educational outreach, digital accessibility, customizable reminders, and recommendations for help-seeking behaviors based on symptom scoring thresholds to improve patient engagement with iterations of this SMP intervention. CLINICALTRIAL
- 24 March 2026
- Published by JMIR Publications Inc. in JMIR Preprints
Open AccessPatient Experiences With a Symptom Monitoring and Self-Referral Program for Specialty Palliative Care After Lung Cancer Diagnosis: Qualitative Study (Preprint)
BACKGROUND Palliative care improves patients’ health-related quality of life (HRQoL) by delivering specialty-level management for cancer symptoms. Digital symptom monitoring programs (SMPs) improve patients’ HRQoL through early symptom identification during cancer care. Through complementary approaches, SMPs and palliative care align with symptom management theory by linking the patient-reported symptom experience with clinician recommendations for symptom management to improve health outcomes for patients with serious illness. While both SMPs and palliative care reduce health care use and improve survival through detection and treatment of cancer symptoms, few studies have attempted to integrate palliative care into SMPs for cancer symptom management. OBJECTIVE This study aimed to assess patients’ perspectives about the feasibility and acceptability of an SMP with a prompted palliative care self-referral option (Symptom Monitoring Program Linked to Electronic Referrals [SyMPLER]) via a mobile health (mHealth) app during lung cancer treatment. METHODS This is a single-institution qualitative study of patients newly diagnosed with lung cancer who were enrolled in a single-arm feasibility pilot of an mHealth app that facilitates on-demand reporting of cancer-related symptoms and prompts patients to self-refer to palliative care for symptom management. Interview participants were purposively sampled based on high (≥3 uses) vs low (0-2 uses) engagement with the app during the first 3 months of access to the SMP. Questions focused on program feasibility and acceptability as well as perceptions of the 5 components of the SMP intervention (introduction to palliative care, reminders, symptom reporting, palliative care self-referral, and oncology team callback). Interviews were conducted from May 2024 to May 2025 by telephone, recorded, transcribed, and analyzed using thematic analysis. RESULTS A total of 31 patients were interviewed; 21 had high and 10 had low app engagement. Participants were mostly White (n=29, 93.5%), female (n=21, 67.7%), and aged 60 years or older (n=19, 61.3%). In high and low engagement groups, participants voiced willingness and ability to report symptoms through the app and self-refer to palliative care if needed for symptom management. Feasibility barriers differed by group, with high-engagement participants noting forgetting to use the app for symptom reporting, while low-engagement participants cited low symptom burden, technology concerns, and time constraints as reasons for limited use of the SMP. Participants described uncertainty about when or why to request palliative care as a major barrier to self-referral. CONCLUSIONS Participants’ perspectives on the feasibility and acceptability of SyMPLER differed by their level of engagement with the SMP app. Participants in both groups voiced acceptance of the option to self-refer to palliative care, although feasibility was limited by low uptake of palliative care self-referral. Participants suggested improvements to educational outreach, digital accessibility, customizable reminders, and recommendations for help-seeking behaviors based on symptom scoring thresholds to improve patient engagement with iterations of this SMP intervention. CLINICALTRIAL
- Open Access
- 18 August 2025
- Published by SAGE Publications in Journal of Patient Experience
- Vol. 12
Assessment of Patient Experience During Active Surveillance for Prostate Cancer
Active surveillance is a preferred strategy for patients with low-risk prostate cancer to delay and/or avoid side effects of treatment. While its impact on health-related quality of life (HRQOL) has been studied, factors influencing follow-up adherence and patient involvement in active surveillance protocols remain less understood. This study aimed to explore patient perspectives on testing modalities, frequencies, and satisfaction with active surveillance. HRQOL surveys and active surveillance-specific questions assessed patients undergoing active surveillance at a US academic medical center between 2019 and 2021 after Institutional Review Board approval. Respondents were invited to interviews and thematic analysis identified key themes. Forty-six participants completed surveys and 12 were interviewed. Satisfaction with active surveillance was reported by 93.3%, and 97.7% indicated a willingness to opt for the same treatment again. Anxiety and urinary function were key factors influencing quality of life. Trust in the doctor's recommendations, avoiding side effects, and feeling it is a good way to monitor their cancer were common reasons for choosing active surveillance. Addressing organizational factors, treatment equity, and evolving patient perspectives can refine active surveillance protocols. Understanding patient experiences can inform tailored protocols and improve patient–provider communication, enhancing patients’ well-being and adherence.
- 18 August 2025
- Published by SAGE Publications in Journal of Patient Experience
- Vol. 12
Open AccessAssessment of Patient Experience During Active Surveillance for Prostate Cancer
Active surveillance is a preferred strategy for patients with low-risk prostate cancer to delay and/or avoid side effects of treatment. While its impact on health-related quality of life (HRQOL) has been studied, factors influencing follow-up adherence and patient involvement in active surveillance protocols remain less understood. This study aimed to explore patient perspectives on testing modalities, frequencies, and satisfaction with active surveillance. HRQOL surveys and active surveillance-specific questions assessed patients undergoing active surveillance at a US academic medical center between 2019 and 2021 after Institutional Review Board approval. Respondents were invited to interviews and thematic analysis identified key themes. Forty-six participants completed surveys and 12 were interviewed. Satisfaction with active surveillance was reported by 93.3%, and 97.7% indicated a willingness to opt for the same treatment again. Anxiety and urinary function were key factors influencing quality of life. Trust in the doctor's recommendations, avoiding side effects, and feeling it is a good way to monitor their cancer were common reasons for choosing active surveillance. Addressing organizational factors, treatment equity, and evolving patient perspectives can refine active surveillance protocols. Understanding patient experiences can inform tailored protocols and improve patient–provider communication, enhancing patients’ well-being and adherence.
- 11 August 2025
- Published by American Psychological Association (APA) in Journal of Family Psychology
- Vol. 39 (7) , 899-905
Characterizing facilitators of and barriers to suicide prevention program development and use: An exploratory study.
Parental history of a suicide attempt increases children's risk for suicidal behavior. This study examined parental perceptions of and willingness to engage in suicide prevention programs for children whose parents have a history of attempting suicide. Semistructured qualitative interviews were conducted with nine parents who had a history of suicide attempt. Parents described three key elements they perceived to be necessary for this type of suicide prevention program: (a) parental involvement and education, (b) child education and counseling, and (c) timeliness of intervention. Parents also identified three barriers that could hinder program participation: (a) fear, stigma, and embarrassment; (b) finances, insurance, time, and transportation; and (c) lack of education. Incorporating these key components within suicide prevention programs as well as addressing identified barriers may increase familial participation and help reduce suicide risk in youth with a parental history of suicide attempt. (PsycInfo Database Record (c) 2025 APA, all rights reserved).
- 11 August 2025
- Published by American Psychological Association (APA) in Journal of Family Psychology
- Vol. 39 (7) , 899-905
Characterizing facilitators of and barriers to suicide prevention program development and use: An exploratory study.
Parental history of a suicide attempt increases children's risk for suicidal behavior. This study examined parental perceptions of and willingness to engage in suicide prevention programs for children whose parents have a history of attempting suicide. Semistructured qualitative interviews were conducted with nine parents who had a history of suicide attempt. Parents described three key elements they perceived to be necessary for this type of suicide prevention program: (a) parental involvement and education, (b) child education and counseling, and (c) timeliness of intervention. Parents also identified three barriers that could hinder program participation: (a) fear, stigma, and embarrassment; (b) finances, insurance, time, and transportation; and (c) lack of education. Incorporating these key components within suicide prevention programs as well as addressing identified barriers may increase familial participation and help reduce suicide risk in youth with a parental history of suicide attempt. (PsycInfo Database Record (c) 2025 APA, all rights reserved).
- 31 July 2025
- Published by SAGE Publications in Substance use & addiction journal
- Vol. 47 (1) , 90-99
Evaluation of a Medication for Opioid Use Disorder Initiation Program in the Emergency Department
Background: Medication for opioid use disorder (MOUD) is the standard evidence-based treatment option for patients with opioid use disorder (OUD). Initiating MOUD in the emergency department (ED) may help patients start the treatment and lead to greater success in sustaining recovery from OUD. Programs have been introduced in EDs to support the initiation of MOUD, but little is known about the implementation facilitators and challenges that impact these programs. The objective of this study was to explore key partners’ perspectives about the facilitators and challenges of implementing and operating an ED-based MOUD program in a large, Midwestern academic medical center. Methods: Interviews were conducted in April and May 2019 with physicians, nurses, social workers, pharmacists, and administrators who were involved in implementing the ED MOUD initiation program. Verbatim transcripts were analyzed both deductively and inductively to identify themes related to the facilitators and challenges of program implementation, and suggestions about factors that contributed to program success. Results: We found subthemes related to each of these 3 major themes. First, facilitators of program implementation included institutional buy-in, community support, involvement of an interdisciplinary team, availability of ongoing training, and public awareness of the opioid epidemic. Second, program implementation challenges included inadequate staffing and training, complications in treatment linkage, uncertainty in prescribing, unclear workflow, and culture change. Identified success factors for program implementation included provider, community, and patient education, data availability, and provider buy-in. Conclusion: Our study results suggest that attention to factors such as buy-in, the need for the right training and education, and establishing key relationships with community organizations can help ED-based MOUD programs fill a critical gap in care for patients with OUD.
- 31 July 2025
- Published by SAGE Publications in Substance use & addiction journal
- Vol. 47 (1) , 90-99
Evaluation of a Medication for Opioid Use Disorder Initiation Program in the Emergency Department
Background: Medication for opioid use disorder (MOUD) is the standard evidence-based treatment option for patients with opioid use disorder (OUD). Initiating MOUD in the emergency department (ED) may help patients start the treatment and lead to greater success in sustaining recovery from OUD. Programs have been introduced in EDs to support the initiation of MOUD, but little is known about the implementation facilitators and challenges that impact these programs. The objective of this study was to explore key partners’ perspectives about the facilitators and challenges of implementing and operating an ED-based MOUD program in a large, Midwestern academic medical center. Methods: Interviews were conducted in April and May 2019 with physicians, nurses, social workers, pharmacists, and administrators who were involved in implementing the ED MOUD initiation program. Verbatim transcripts were analyzed both deductively and inductively to identify themes related to the facilitators and challenges of program implementation, and suggestions about factors that contributed to program success. Results: We found subthemes related to each of these 3 major themes. First, facilitators of program implementation included institutional buy-in, community support, involvement of an interdisciplinary team, availability of ongoing training, and public awareness of the opioid epidemic. Second, program implementation challenges included inadequate staffing and training, complications in treatment linkage, uncertainty in prescribing, unclear workflow, and culture change. Identified success factors for program implementation included provider, community, and patient education, data availability, and provider buy-in. Conclusion: Our study results suggest that attention to factors such as buy-in, the need for the right training and education, and establishing key relationships with community organizations can help ED-based MOUD programs fill a critical gap in care for patients with OUD.
- Open Access
- 30 June 2025
- Published by MDPI AG in Healthcare
- Vol. 13 (13) , 1568
Long COVID Patients’ Perceptions of Social Support in Their Work and Personal Lives: A Qualitative Study
Background: The onset and persistence of Long COVID can lead to cognitive and functional impairment, contributing to illness-induced employment and work disparities. Understanding how social support influences these issues can inform care strategies and support continued workforce participation. Objectives: This study explored perceptions of social support among patients with Long COVID. Methods: Semi-structured interviews were conducted with 21 patients receiving care at a post-COVID recovery clinic. Patient perspectives on social support in their work and personal lives were analyzed using both inductive and deductive thematic analysis. Findings were organized under the following five dimensions of social support theory: tangible support, emotional support, informational support, appraisal support, and belonging support. Results: Patients received positive tangible, emotional, and informational support from family, friends, and credible sources. However, patients also described receiving negative appraisal support from their personal lives and workplaces when others misunderstood the scope and duration of their limitations due to Long COVID. This negative appraisal support often labeled them as lazy or underperforming, leading to both personal and professional challenges to their self-esteem. Regarding companionship support, participants reported challenges keeping in touch with others and being less social. Conclusions: Social support impacts Long COVID patients’ abilities to cope with the trauma of their experiences. Understanding the sources of and barriers to social support for Long COVID patients may inform strategies to enhance their care and well-being. Future interventions should offer opportunities for family, friends, and employers of Long COVID patients to learn about what it means to live with the illness.
- 30 June 2025
- Published by MDPI AG in Healthcare
- Vol. 13 (13) , 1568
Open AccessLong COVID Patients’ Perceptions of Social Support in Their Work and Personal Lives: A Qualitative Study
Background: The onset and persistence of Long COVID can lead to cognitive and functional impairment, contributing to illness-induced employment and work disparities. Understanding how social support influences these issues can inform care strategies and support continued workforce participation. Objectives: This study explored perceptions of social support among patients with Long COVID. Methods: Semi-structured interviews were conducted with 21 patients receiving care at a post-COVID recovery clinic. Patient perspectives on social support in their work and personal lives were analyzed using both inductive and deductive thematic analysis. Findings were organized under the following five dimensions of social support theory: tangible support, emotional support, informational support, appraisal support, and belonging support. Results: Patients received positive tangible, emotional, and informational support from family, friends, and credible sources. However, patients also described receiving negative appraisal support from their personal lives and workplaces when others misunderstood the scope and duration of their limitations due to Long COVID. This negative appraisal support often labeled them as lazy or underperforming, leading to both personal and professional challenges to their self-esteem. Regarding companionship support, participants reported challenges keeping in touch with others and being less social. Conclusions: Social support impacts Long COVID patients’ abilities to cope with the trauma of their experiences. Understanding the sources of and barriers to social support for Long COVID patients may inform strategies to enhance their care and well-being. Future interventions should offer opportunities for family, friends, and employers of Long COVID patients to learn about what it means to live with the illness.
- Open Access
- 5 June 2025
- Published by Elsevier in American Journal of Infection Control
- Vol. 53 (9) , 997-1000
Development of the SMART Toolkit: An online collection of management resources for health care-associated infection prevention
- 5 June 2025
- Published by Elsevier in American Journal of Infection Control
- Vol. 53 (9) , 997-1000
Open AccessDevelopment of the SMART Toolkit: An online collection of management resources for health care-associated infection prevention
- Open Access
The Role of Social Support in Buffering the Financial Toxicity of Breast Cancer: A Qualitative Study of Patient Experiences
Background/Objectives: Financial distress from the direct and indirect costs of cancer treatment is a critical issue for many patients with breast cancer, particularly those from underserved populations who may be more vulnerable to financial hardship and its negative impacts on quality of life and clinical outcomes (i.e., financial toxicity). Few investigations, however, focus on protective factors that safeguard against financial toxicity. This study explores how social support might reduce financial toxicity among patients with breast cancer who are at high risk for financial hardship. Methods: We analyzed interviews with 41 adult women treated for stage I-IV breast cancer that had been conducted between December 2021 and March 2022. Our study specifically sampled women considered to be at elevated risk for financial toxicity: young adults aged 18–40 years old, Black women, women with lower incomes, and those residing in rural communities. We used deductive and inductive coding to identify themes related to social support. Results: Interviewees reported receiving support from family, friends, and their communities during their treatments. They noted how this social support helped with direct and indirect costs, encouraged emotional wellbeing, and safeguarded against economizing behaviors that offset spending (e.g., financial tradeoffs that jeopardize their treatment plan). Conclusions: Patients with breast cancer from groups vulnerable to financial toxicity often rely on the support of family, friends, and their communities to help buffer financial distress from the costs of treatment. These data highlight social support as an area for future studies exploring strategies to mitigate financial toxicity.
Open AccessThe Role of Social Support in Buffering the Financial Toxicity of Breast Cancer: A Qualitative Study of Patient Experiences
Background/Objectives: Financial distress from the direct and indirect costs of cancer treatment is a critical issue for many patients with breast cancer, particularly those from underserved populations who may be more vulnerable to financial hardship and its negative impacts on quality of life and clinical outcomes (i.e., financial toxicity). Few investigations, however, focus on protective factors that safeguard against financial toxicity. This study explores how social support might reduce financial toxicity among patients with breast cancer who are at high risk for financial hardship. Methods: We analyzed interviews with 41 adult women treated for stage I-IV breast cancer that had been conducted between December 2021 and March 2022. Our study specifically sampled women considered to be at elevated risk for financial toxicity: young adults aged 18–40 years old, Black women, women with lower incomes, and those residing in rural communities. We used deductive and inductive coding to identify themes related to social support. Results: Interviewees reported receiving support from family, friends, and their communities during their treatments. They noted how this social support helped with direct and indirect costs, encouraged emotional wellbeing, and safeguarded against economizing behaviors that offset spending (e.g., financial tradeoffs that jeopardize their treatment plan). Conclusions: Patients with breast cancer from groups vulnerable to financial toxicity often rely on the support of family, friends, and their communities to help buffer financial distress from the costs of treatment. These data highlight social support as an area for future studies exploring strategies to mitigate financial toxicity.
- Open Access
- 30 September 2024
- Published by MDPI AG in Challenges
- Vol. 15 (4) , 39
Implications of Long COVID for Society: Insights into the Physical, Social, and Financial Impacts from Patient Interviews
Long COVID affects millions of people worldwide and has emerged as a major health consequence of the COVID-19 pandemic. While quantitative studies have helped paint a picture of ongoing symptomatology, there are very few longitudinal qualitative studies that present patients’ perspectives about the significant and persistent impact Long COVID has on their daily lives. To address this gap, we conducted semi-structured qualitative interviews with nine Long COVID patients about 15 months after we performed an initial set of interviews with those patients who were seeking care at a Long COVID specialty clinic. Most patients that we re-interviewed reported having lingering symptoms that continue to impact their lives. Many described suffering with mental health issues, particularly depression and anxiety. Others described financial stress. Most reported not yet being unable to return to their pre-COVID level of health and well-being. Our work demonstrates the ongoing need to study Long COVID and provide robust social support, mental health resources, and healthcare focused on symptom relief.
- 30 September 2024
- Published by MDPI AG in Challenges
- Vol. 15 (4) , 39
Open AccessImplications of Long COVID for Society: Insights into the Physical, Social, and Financial Impacts from Patient Interviews
Long COVID affects millions of people worldwide and has emerged as a major health consequence of the COVID-19 pandemic. While quantitative studies have helped paint a picture of ongoing symptomatology, there are very few longitudinal qualitative studies that present patients’ perspectives about the significant and persistent impact Long COVID has on their daily lives. To address this gap, we conducted semi-structured qualitative interviews with nine Long COVID patients about 15 months after we performed an initial set of interviews with those patients who were seeking care at a Long COVID specialty clinic. Most patients that we re-interviewed reported having lingering symptoms that continue to impact their lives. Many described suffering with mental health issues, particularly depression and anxiety. Others described financial stress. Most reported not yet being unable to return to their pre-COVID level of health and well-being. Our work demonstrates the ongoing need to study Long COVID and provide robust social support, mental health resources, and healthcare focused on symptom relief.