Peer support is a central tenant of the Disability Rights Movements and is based on the recogniti... more Peer support is a central tenant of the Disability Rights Movements and is based on the recognition that experiential knowledge and shared experiences provide opportunities for informational, emotional and appraisal support amongst people with physical disabilities. "Peer support interventions" is an umbrella term used to describe a range of ancillary services provided by people with disabilities to people with disabilities, including peer mentoring, peer health education, and peer health navigation. A growing body of research documents the development, implementation and outcomes of peer support interventions for people with physical disabilities in physical medicine and rehabilitation. The organization, structure and objectives of peer support interventions vary tremendously making it difficult to synthesize findings across studies and establish best practices to support their systematic implementation across the continuum of care. This paper is a call to action for greater conceptual clarity in how peer support interventions are developed, implemented, and evaluated. We propose a 9-part evidence-informed framework delineating both theory-driven and contextual considerations to help strengthen the evidence-base of peer support interventions for people with disabilities in physical medicine and rehabilitation.
In the National Children's Study (NCS), assessments were proposed and developed that used a w... more In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.
Background: In order to develop health outcomes measures that are relevant and applicable to the ... more Background: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. Methods: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non–English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. Results: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. Conclusion: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups. Neurology 2013;80...
9056 Background: As new cancer therapies are developed, it is important to evaluate their efficac... more 9056 Background: As new cancer therapies are developed, it is important to evaluate their efficacy based not only on survival outcomes but also meaningful patient benefit in terms of symptoms and concerns that are important to patients. The purpose of this study of patients undergoing 2nd/3rd line chemotherapy for non-small cell lung cancer (NSCLC) was to characterize pulmonary symptoms and the importance patients place on these symptoms, as a part of assessing the content validity of the Pulmonary Symptom Index (PSI) of the Functional Assessment of Cancer Therapy – Lung (FACT-L). Methods: We conducted semi-structured thematic interviews with 20 stage III/IV NSCLC patients undergoing 2nd or 3rd line treatment. Interviews included open elicitation of NSCLC symptoms and their functional impact, and participant ratings of the relative importance of pulmonary symptoms. Results: Mean age was 62 years (range 30-79); 80% had non-squamous histology, and 30% had co-morbid COPD. While partici...
Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based... more Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based participatory research (CBPR) team, which was shaped by team members’ various occupational identities. Dual identities, although at times challenging to navigate, may serve as a bridge, facilitating collaboration in CBPR teams. Primary Author and Speaker: Amber Angell Additional Authors and Speakers: Alli Ferlin, Christina Papadimitriou, Susan Magasi Contributing Authors: Judy Panko Reis, Tom Wilson, Jennifer Thomas
Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge t... more Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge translation strategies and transformative curriculum design on the standardized use of the Canadian Occupational Performance Measure and reported self-efficacy in inpatient stroke rehabilitation. A moderate to large effect size occurred after the education. Primary Author and Speaker: Piper Hansen Contributing Authors: Joy Hammel, Susan Magasi, Jennifer Moore, Allen Heinemann
Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cer... more Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cervical cancer among women with disabilities, along with modifiable barriers to screening. By understanding and addressing these barriers, occupational therapy practitioners can be change agents at the provider and client levels. Research Platform
ObjectiveThe Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participator... more ObjectiveThe Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention.MethodsClinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage ...
International Journal of Environmental Research and Public Health, 2022
Eliminating cancer-related disparities is a global public health priority. Approximately 40% of c... more Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma (n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairme...
Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivor... more Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivors and their family caregivers during survivorship. Eighteen semi-structured interviews were conducted with a variety of stakeholders including Latinx cancer survivors (n = 8), their family caregivers (n = 5), and cancer care providers (n = 5). Data were analyzed thematically to describe occupational participation. Latinx families lived in political, economic, language, and social contexts that facilitated and hindered their well-being. Survivors simultaneously experienced occupational deprivation and posttraumatic growth. To promote occupational justice, occupational therapy practitioners and researchers are called to partner with Latinx survivors and their families to facilitate skills needed for everyday participation.
As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of t... more As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of the health status of the whole child, scientific teams were convened to recommend assessment measures for the NCS. This manuscript documents the work of three scientific teams who focused on the motor, sensory, or the physical health aspects of this assessment. Each domain team offered a value proposition for the importance of their domain to the health outcomes of the developing infant and child. Constructs within each domain were identified and measures of these constructs proposed. Where available extant assessments were identified. Those constructs that were in need of revised or new assessment instruments were identified and described. Recommendations also were made for the age when the assessments should take place.
Archives of Physical Medicine and Rehabilitation, 2021
Objective(s) To investigate the state of the science around availability and appropriate use of a... more Objective(s) To investigate the state of the science around availability and appropriate use of accessible medical diagnostic equipment (AMDE) for patients with disabilities (PWD). Data Sources Bibliographic databases PubMed, CINAHL, Embase were searched (January 2000- February 2021). Terms included diagnostic equipment, examination table, weight scale, imaging equipment, mammography, wheelchair, disabled persons, and health services accessibility. Study Selection English-language research of any design, conducted in the US, focused on adults with physical disabilities, and describing/evaluating AMDE was included. Two researchers independently evaluated studies. Initial search yielded 813 results; 29 studies were included. All methods were in accordance with the WHO's guidelines for rapid reviews. Data Extraction Key study characteristics of included articles were extracted by one researcher and reviewed for accuracy by another. The quality of included studies was assessed independently by two researchers using the Mixed Methods Appraisal Tool. Data Synthesis Both quantitative (n=18) and qualitative (n=11) research revealed that PWD identify lack of access to AMDE as a barrier to safe and equitable primary and specialty healthcare. Providers and PWD report that the presence of AMDE doesn't translate into use of equipment by providers. Additionally, Facilities typically rated themselves higher on accessibility surveys than third party auditors. Conclusions Although access to MDE has improved slightly in recent decades, the presence and use of accessible equipment remains infrequent, creating barriers for PWD. Existing studies on AMDE are largely descriptive, establishing the scope of the issue. Future research should focus on evaluating impact, outcomes, and cost in order to facilitate greater adoption of AMDE in accordance with the US Access Board's 2017 standards and ADA. Author(s) Disclosures This rapid review was partially funded by a cooperative agreement with the National Council on Disability.
The American Journal of Occupational Therapy, 2021
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limi... more Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation during survivorship is a product of cultural values, environmental influences, and occupational gains and losses. To promote occupational justice, the OT profession is called to deliver culturally tailored care to capitalize on this group's strengths and prepare them for daily participation. Primary Author and Speaker: Ricardo Daniel Ramirez Additional Authors and Speakers: Susan Magasi
63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is... more 63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is important for characterizing drug treatment benefit as well as developing appropriate psychosocial support interventions. The purpose of this interview study of patients undergoing second and third line therapy for non-small cell lung cancer (NSCLC) was to characterize their physiological, especially pulmonary, symptoms, functional impacts, emotional distress, health-related quality of life (HRQOL), and coping strategies. Methods: Semi-structured thematic interviews with 20 patients in second and third line treatment for advanced NSCLC. Interviews included open elicitation of NSCLC symptoms, their functional impact, and coping strategies. Results: Mean age was 62 years (range 30-79); 80% of patients had non-squamous histology, and 25% had co-morbid COPD. Patients described a range of core symptom experiences, severity, functional impacts, and coping strategies. Shortness of breath (repo...
To identify factors underlying heart failure hospitalization. Between January 1, 2012, and May 31... more To identify factors underlying heart failure hospitalization. Between January 1, 2012, and May 31, 2012, we combined medical record reviews and cross-sectional qualitative interviews of multiple patients with heart failure, their clinicians, and their caregivers from a large academic medical center in the Midwestern United States. The interview data were analyzed using a 3-step grounded theory-informed process and constant comparative methods. Qualitative data were compared and contrasted with results from the medical record review. Patient nonadherence to the care plan was the most important contributor to hospital admission; however, reasons for nonadherence were complex and multifactorial. The data highlight the importance of patient education for the purposes of condition management, timeliness of care, and effective communication between providers and patients. To improve the consistency and quality of care for patients with heart failure, more effective relationships among patients, providers, and caregivers are needed. Providers must be pragmatic when educating patients and their caregivers about heart failure, its treatment, and its prognosis.
If measures of muscle strength are to be broadly applied, they should be objective, portable, qui... more If measures of muscle strength are to be broadly applied, they should be objective, portable, quick, and reliable. Through this component of the NIH Toolbox study we sought to compare the test-retest reliability of 3 tests of muscle strength that are objective, portable, and quick: the five-repetition sit-to-stand test (FRSTST), hand-grip dynamometry (HGD), and belt-stabilized hand-held dynamometry (BSHHD) of knee extension. Three sets of each test were performed- 1 warm-up and 2 maximal. Measures from the maximal tests obtained 4 to 10 days apart were compared. Reliability was described using descriptive statistics, intraclass correlation coefficients (ICCs) and 4 measures of response stability: standard error of measurement (SEM), method error (ME), coefficient of variation of SEM (SEM CV ), and coefficient of variation of variation of ME (ME CV ). The ICCs of all tests were good (≥ 0.853). Measures of response stability showed less variability between test and retest for FRSTST a...
The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations ... more The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations below average) for grip strength for healthy young adults and to examine the utility of t-scores from this group for the identification of dynapenia in older adults. Our investigation was a population-based, general community secondary analysis of cross-sectional grip strength data utilizing the NIH Toolbox Assessment norming sample. Participants consisted of community-dwelling adults, with age ranges of 20-40 years (n = 558) and 60-85 years (n = 390). The main outcome measure was grip strength using a Jamar plus dynamometer. Maximum grip strengths were consistent over the 20-40-year age group [men 108.0 (SD 22.6) pounds, women 65.8 (SD 14.6) pounds]. Comparison of older group grip strengths to those of the younger reference group revealed (depending on age strata) that 46.2-87.1% of older men and 50.0-82.4% of older women could be designated as dynapenic on the basis of t-scores. The us...
Peer support is a central tenant of the Disability Rights Movements and is based on the recogniti... more Peer support is a central tenant of the Disability Rights Movements and is based on the recognition that experiential knowledge and shared experiences provide opportunities for informational, emotional and appraisal support amongst people with physical disabilities. "Peer support interventions" is an umbrella term used to describe a range of ancillary services provided by people with disabilities to people with disabilities, including peer mentoring, peer health education, and peer health navigation. A growing body of research documents the development, implementation and outcomes of peer support interventions for people with physical disabilities in physical medicine and rehabilitation. The organization, structure and objectives of peer support interventions vary tremendously making it difficult to synthesize findings across studies and establish best practices to support their systematic implementation across the continuum of care. This paper is a call to action for greater conceptual clarity in how peer support interventions are developed, implemented, and evaluated. We propose a 9-part evidence-informed framework delineating both theory-driven and contextual considerations to help strengthen the evidence-base of peer support interventions for people with disabilities in physical medicine and rehabilitation.
In the National Children's Study (NCS), assessments were proposed and developed that used a w... more In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.
Background: In order to develop health outcomes measures that are relevant and applicable to the ... more Background: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. Methods: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non–English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. Results: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. Conclusion: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups. Neurology 2013;80...
9056 Background: As new cancer therapies are developed, it is important to evaluate their efficac... more 9056 Background: As new cancer therapies are developed, it is important to evaluate their efficacy based not only on survival outcomes but also meaningful patient benefit in terms of symptoms and concerns that are important to patients. The purpose of this study of patients undergoing 2nd/3rd line chemotherapy for non-small cell lung cancer (NSCLC) was to characterize pulmonary symptoms and the importance patients place on these symptoms, as a part of assessing the content validity of the Pulmonary Symptom Index (PSI) of the Functional Assessment of Cancer Therapy – Lung (FACT-L). Methods: We conducted semi-structured thematic interviews with 20 stage III/IV NSCLC patients undergoing 2nd or 3rd line treatment. Interviews included open elicitation of NSCLC symptoms and their functional impact, and participant ratings of the relative importance of pulmonary symptoms. Results: Mean age was 62 years (range 30-79); 80% had non-squamous histology, and 30% had co-morbid COPD. While partici...
Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based... more Date Presented 4/20/2018 This ethnography explored the collaborative process of a community-based participatory research (CBPR) team, which was shaped by team members’ various occupational identities. Dual identities, although at times challenging to navigate, may serve as a bridge, facilitating collaboration in CBPR teams. Primary Author and Speaker: Amber Angell Additional Authors and Speakers: Alli Ferlin, Christina Papadimitriou, Susan Magasi Contributing Authors: Judy Panko Reis, Tom Wilson, Jennifer Thomas
Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge t... more Date Presented 4/9/2016 The purpose of this research is to explore the effect of both knowledge translation strategies and transformative curriculum design on the standardized use of the Canadian Occupational Performance Measure and reported self-efficacy in inpatient stroke rehabilitation. A moderate to large effect size occurred after the education. Primary Author and Speaker: Piper Hansen Contributing Authors: Joy Hammel, Susan Magasi, Jennifer Moore, Allen Heinemann
Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cer... more Date Presented 4/17/2015 In this mixed-methods study, we identified disparities in breast and cervical cancer among women with disabilities, along with modifiable barriers to screening. By understanding and addressing these barriers, occupational therapy practitioners can be change agents at the provider and client levels. Research Platform
ObjectiveThe Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participator... more ObjectiveThe Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention.MethodsClinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage ...
International Journal of Environmental Research and Public Health, 2022
Eliminating cancer-related disparities is a global public health priority. Approximately 40% of c... more Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma (n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairme...
Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivor... more Abstract The purpose of this study was to examine the lived experiences of Latinx cancer survivors and their family caregivers during survivorship. Eighteen semi-structured interviews were conducted with a variety of stakeholders including Latinx cancer survivors (n = 8), their family caregivers (n = 5), and cancer care providers (n = 5). Data were analyzed thematically to describe occupational participation. Latinx families lived in political, economic, language, and social contexts that facilitated and hindered their well-being. Survivors simultaneously experienced occupational deprivation and posttraumatic growth. To promote occupational justice, occupational therapy practitioners and researchers are called to partner with Latinx survivors and their families to facilitate skills needed for everyday participation.
As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of t... more As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of the health status of the whole child, scientific teams were convened to recommend assessment measures for the NCS. This manuscript documents the work of three scientific teams who focused on the motor, sensory, or the physical health aspects of this assessment. Each domain team offered a value proposition for the importance of their domain to the health outcomes of the developing infant and child. Constructs within each domain were identified and measures of these constructs proposed. Where available extant assessments were identified. Those constructs that were in need of revised or new assessment instruments were identified and described. Recommendations also were made for the age when the assessments should take place.
Archives of Physical Medicine and Rehabilitation, 2021
Objective(s) To investigate the state of the science around availability and appropriate use of a... more Objective(s) To investigate the state of the science around availability and appropriate use of accessible medical diagnostic equipment (AMDE) for patients with disabilities (PWD). Data Sources Bibliographic databases PubMed, CINAHL, Embase were searched (January 2000- February 2021). Terms included diagnostic equipment, examination table, weight scale, imaging equipment, mammography, wheelchair, disabled persons, and health services accessibility. Study Selection English-language research of any design, conducted in the US, focused on adults with physical disabilities, and describing/evaluating AMDE was included. Two researchers independently evaluated studies. Initial search yielded 813 results; 29 studies were included. All methods were in accordance with the WHO's guidelines for rapid reviews. Data Extraction Key study characteristics of included articles were extracted by one researcher and reviewed for accuracy by another. The quality of included studies was assessed independently by two researchers using the Mixed Methods Appraisal Tool. Data Synthesis Both quantitative (n=18) and qualitative (n=11) research revealed that PWD identify lack of access to AMDE as a barrier to safe and equitable primary and specialty healthcare. Providers and PWD report that the presence of AMDE doesn't translate into use of equipment by providers. Additionally, Facilities typically rated themselves higher on accessibility surveys than third party auditors. Conclusions Although access to MDE has improved slightly in recent decades, the presence and use of accessible equipment remains infrequent, creating barriers for PWD. Existing studies on AMDE are largely descriptive, establishing the scope of the issue. Future research should focus on evaluating impact, outcomes, and cost in order to facilitate greater adoption of AMDE in accordance with the US Access Board's 2017 standards and ADA. Author(s) Disclosures This rapid review was partially funded by a cooperative agreement with the National Council on Disability.
The American Journal of Occupational Therapy, 2021
Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limi... more Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Latinx cancer survivors experience worse physical and mental health during survivorship. This group's occupational participation during survivorship is a product of cultural values, environmental influences, and occupational gains and losses. To promote occupational justice, the OT profession is called to deliver culturally tailored care to capitalize on this group's strengths and prepare them for daily participation. Primary Author and Speaker: Ricardo Daniel Ramirez Additional Authors and Speakers: Susan Magasi
63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is... more 63 Background: Understanding key concerns and symptoms of patients undergoing cancer treatment is important for characterizing drug treatment benefit as well as developing appropriate psychosocial support interventions. The purpose of this interview study of patients undergoing second and third line therapy for non-small cell lung cancer (NSCLC) was to characterize their physiological, especially pulmonary, symptoms, functional impacts, emotional distress, health-related quality of life (HRQOL), and coping strategies. Methods: Semi-structured thematic interviews with 20 patients in second and third line treatment for advanced NSCLC. Interviews included open elicitation of NSCLC symptoms, their functional impact, and coping strategies. Results: Mean age was 62 years (range 30-79); 80% of patients had non-squamous histology, and 25% had co-morbid COPD. Patients described a range of core symptom experiences, severity, functional impacts, and coping strategies. Shortness of breath (repo...
To identify factors underlying heart failure hospitalization. Between January 1, 2012, and May 31... more To identify factors underlying heart failure hospitalization. Between January 1, 2012, and May 31, 2012, we combined medical record reviews and cross-sectional qualitative interviews of multiple patients with heart failure, their clinicians, and their caregivers from a large academic medical center in the Midwestern United States. The interview data were analyzed using a 3-step grounded theory-informed process and constant comparative methods. Qualitative data were compared and contrasted with results from the medical record review. Patient nonadherence to the care plan was the most important contributor to hospital admission; however, reasons for nonadherence were complex and multifactorial. The data highlight the importance of patient education for the purposes of condition management, timeliness of care, and effective communication between providers and patients. To improve the consistency and quality of care for patients with heart failure, more effective relationships among patients, providers, and caregivers are needed. Providers must be pragmatic when educating patients and their caregivers about heart failure, its treatment, and its prognosis.
If measures of muscle strength are to be broadly applied, they should be objective, portable, qui... more If measures of muscle strength are to be broadly applied, they should be objective, portable, quick, and reliable. Through this component of the NIH Toolbox study we sought to compare the test-retest reliability of 3 tests of muscle strength that are objective, portable, and quick: the five-repetition sit-to-stand test (FRSTST), hand-grip dynamometry (HGD), and belt-stabilized hand-held dynamometry (BSHHD) of knee extension. Three sets of each test were performed- 1 warm-up and 2 maximal. Measures from the maximal tests obtained 4 to 10 days apart were compared. Reliability was described using descriptive statistics, intraclass correlation coefficients (ICCs) and 4 measures of response stability: standard error of measurement (SEM), method error (ME), coefficient of variation of SEM (SEM CV ), and coefficient of variation of variation of ME (ME CV ). The ICCs of all tests were good (≥ 0.853). Measures of response stability showed less variability between test and retest for FRSTST a...
The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations ... more The aim of this study was to generate reference values and t-scores (1.0-2.5 standard deviations below average) for grip strength for healthy young adults and to examine the utility of t-scores from this group for the identification of dynapenia in older adults. Our investigation was a population-based, general community secondary analysis of cross-sectional grip strength data utilizing the NIH Toolbox Assessment norming sample. Participants consisted of community-dwelling adults, with age ranges of 20-40 years (n = 558) and 60-85 years (n = 390). The main outcome measure was grip strength using a Jamar plus dynamometer. Maximum grip strengths were consistent over the 20-40-year age group [men 108.0 (SD 22.6) pounds, women 65.8 (SD 14.6) pounds]. Comparison of older group grip strengths to those of the younger reference group revealed (depending on age strata) that 46.2-87.1% of older men and 50.0-82.4% of older women could be designated as dynapenic on the basis of t-scores. The us...
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Papers by Susan Magasi