Nancy Mayo - Academia.edu (original) (raw)

Papers by Nancy Mayo

Research paper thumbnail of Development of a Prototype for a Bilingual Patient-Reported Outcome Measure of the Important Health Aspects of Quality of Life in People Living with HIV: The Preference Based HIV Index (PB-HIV)

Journal of Personalized Medicine, Dec 16, 2022

Research paper thumbnail of Identifying domains of health-related quality of life: the perspective of individuals with low back pain

Journal of Patient-Reported Outcomes

Background Identifying the most relevant HRQOL domains for LBP from the perspective of individual... more Background Identifying the most relevant HRQOL domains for LBP from the perspective of individuals with lived experience with LBP is necessary to prioritize domains that will be most informative for evaluating the impact of pain and interventions while overcoming the burden of using long-form assessment tools. This study aimed to identify which domains of HRQOL are most important from the perspective of individuals with chronic LBP. Methods Semi-structured interviews were conducted with 26 individuals with LBP. Participants first responded to questions related to the impact of their LBP on their HRQOL. Then, using a card sorting method, they were asked to select and indicate HRQOL domains that were most relevant to them from a list of 18 cards that represented different HRQOL domains. Participants were asked to explain the reasoning for their selection. Results Participants identified physical activity restriction (50%), severity of pain (31%), social activity restriction (23%), and...

Research paper thumbnail of Implications of the syntheses on definition, theory, and methods conducted by the Response Shift – in Sync Working Group

Quality of Life Research

Purpose Our aim is to advance response shift research by explicating the implications of publishe... more Purpose Our aim is to advance response shift research by explicating the implications of published syntheses by the Response Shift – in Sync Working Group in an integrative way and suggesting ways for improving the quality of future response shift studies. Methods Members of the Working Group further discussed the syntheses of the literature on definitions, theoretical underpinnings, operationalizations, and response shift methods. They outlined areas in need of further explication and refinement, and delineated additional implications for future research. Results First, the proposed response shift definition was further specified and its implications for the interpretation of results explicated in relation to former, published definitions. Second, the proposed theoretical model was further explained in relation to previous theoretical models and its implications for formulating research objectives highlighted. Third, ways to explore alternative explanations per response shift metho...

Research paper thumbnail of The Families First Program to Prevent Child Abuse: Results of a Cluster Randomized Controlled Trial in West Java, Indonesia

Prevention Science

The Families First parenting program is a 10-week paraprofessional-administered adaptation of the... more The Families First parenting program is a 10-week paraprofessional-administered adaptation of the Positive Discipline in Everyday Parenting program for West Java, Indonesia. It has not been tested in a randomized controlled trial. The objective was to evaluate the effects of Families First on physical and emotional punishment. We conducted a cluster randomized controlled trial and randomly assigned 20 rural and urban villages in West Java, Indonesia, to intervention or waitlist. Caregivers of children aged 0–7 years in intervention villages received Families First. Between 2017 and 2018, measurements were taken before randomization, immediately post-intervention, and 6 months post-intervention. Primary outcome was presence versus absence of caregiver-reported physical or emotional punishment immediately post-intervention. Intention-to-treat regression models accounted for clustering within villages and were run to compare between groups. Participants and study personnel could not be...

Research paper thumbnail of Action for better brain health among people living with HIV: protocol for a randomized controlled trial

BMC Infectious Diseases, 2021

Background Lifestyle changes can protect or improve brain health in older adults. However, sustai... more Background Lifestyle changes can protect or improve brain health in older adults. However, sustained lifestyle change is difficult for everyone and may be more difficult for those with executive dysfunction, including some people living with HIV. Thus, the key question is how we can improve adherence to the most promising interventions among people living with HIV experiencing cognitive difficulties. Goal management training is a cognitive rehabilitation program that targets executive dysfunction by teaching goal-directed behaviour and self-management. It is a promising means to improve adherence to lifestyle interventions. Objective To estimate the extent to which goal management training before a healthy lifestyle program is associated with greater adherence to health recommendations, achievement of health-related goals, and better brain health and health outcomes compared to the healthy lifestyle program alone among people living with HIV. Methods Brain Health Now cohort particip...

Research paper thumbnail of Association Between Patient Activation and Health Care Utilization After Thoracic and Abdominal Surgery

Research paper thumbnail of Impairment, disability and fatigue in multiple sclerosis

Caspian Journal of Internal Medicine, 2018

Background: Identifying the predictors of pain is important for both health professionals and res... more Background: Identifying the predictors of pain is important for both health professionals and researchers, because pain has repeatedly been found to be a strong predictor of activity limitations and participation restrictions. The objective of this study was to determine the predictors of pain presence and severity in a large, well-designed sample of community dwelling individuals with multiple sclerosis (MS). Methods: This was a cross-sectional study. A center-stratified random sample including 188 persons with MS were recruited from three major MS clinics in the Greater Montreal, Canada. Main outcomes included pain prevalence and severity. Predictor variables included depression, anxiety, perceived health status, fatigue, sleep problems, and perceived cognitive deficits. Participants completed three questionnaires: the first asked about the socio-demographic and clinical information of the subjects, the second assessed the pain characteristics of the subjects, and the third covere...

Research paper thumbnail of Correction to: Response shift in patient-reported outcomes: definition, theory, and a revised model

Quality of Life Research, 2021

A correction to this paper has been published: https://doi.org/10.1007/s11136-021-02890-6

Research paper thumbnail of Response shift in results of patient-reported outcome measures: a commentary to The Response Shift—in Sync Working Group initiative

Quality of Life Research, 2021

Purpose The Working Group undertook a critical, comprehensive synthesis of the response shift wor... more Purpose The Working Group undertook a critical, comprehensive synthesis of the response shift work to date. We aimed to (1) describe the rationale for this initiative; (2) outline how the Working Group operated; (3) summarize the papers that comprise this initiative; and (4) discuss the way forward. Methods Four interdisciplinary teams, consisting of response shift experts, external experts, and new investigators, prepared papers on (1) definitions and theoretical underpinnings, (2) operationalizations and response shift methods, (3) implications for healthcare decision-making, and (4) on the published magnitudes of response shift effects. Draft documents were discussed during a two-day meeting. Papers were reviewed by all members. Results Vanier and colleagues revised the formal definition and theory of response shift, and applied these in an amended, explanatory model of response shift. Sébille and colleagues conducted a critical examination of eleven response shift methods and co...

Research paper thumbnail of Clinically Assessed Walking Capacity Versus Real-World Walking Performance in People with Multiple Sclerosis

International Journal of MS Care, 2020

CME/CNE InformationActivity Available Online: To access the article, post-test, and evaluation on... more CME/CNE InformationActivity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org.Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS).Learning Objectives: 1) Differentiate between measurement tools for clinical walking capacity and for real-world performance. 2) Describe discrepancies between performance on a walking capacity test and real-world performance, and how these discrepancies vary between patients with high versus low walking capacity.Accreditation Statement:In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy ...

Research paper thumbnail of Effectiveness of a personalized health profile on specificity of self-management goals among people living with HIV in Canada: a protocol for a blinded pragmatic randomized controlled trial

MNI Open Research, 2020

Background: Goal setting is a crucial element in self-management of chronic diseases. Personalize... more Background: Goal setting is a crucial element in self-management of chronic diseases. Personalized outcome feedback is needed for goal setting, a requirement for behavior change. This study contributes to the understanding of the specificity of patient-formulated self-management goals by testing the effectiveness of a personalized health outcome profile. Objective: To estimate among people living with HIV, to what extent providing feedback on their health outcomes, compared to no feedback, will affect number and specificity of patient-formulated self-management goals. Methods: A personalized health outcome profile has been produced for individuals enrolled in a Canadian HIV Brain Health Now cohort study at cohort entry and at the last recorded visit. Participants will be randomized to receive or not “My Personal Brain Health Dashboard” prior to a goal setting exercise. Self-defined goals in free text will be collected through an online platform. Intervention and control groups will ...

Research paper thumbnail of A Catalyst for Transforming Health Systems and Person-Centred Care: Canadian National Position Statement on Patient-Reported Outcomes

Current Oncology, 2020

Background: Patient-reported outcomes (pros) are essential to capture the patient’s perspective a... more Background: Patient-reported outcomes (pros) are essential to capture the patient’s perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting. Methods: The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14–15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice. Results: The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections c...

Research paper thumbnail of What does pain in MS feel like? -A multicenter cross-sectional study of pain descriptors and characteristics

Internal Medicine and Care, 2017

Research paper thumbnail of Does Type of Pain Predict Pain Severity Changes in Individuals With Multiple Sclerosis? A Longitudinal Analysis Using Generalized Estimating Equations

Journal of Advances in Medical and Biomedical Research, 2019

Research paper thumbnail of Preoperative Risk Index Among Patients Undergoing Thyroid or Parathyroid Surgery

JAMA Otolaryngology–Head & Neck Surgery, 2019

Research paper thumbnail of Factors Associated With Participation in Life Situations for Adults With Stroke: A Systematic Review

Archives of Physical Medicine and Rehabilitation, 2018

Research paper thumbnail of Properties of a brief assessment tool for longitudinal measurement of cognition in people living with HIV

Research paper thumbnail of Real-Time Auditory Feedback Induced Adaptation to Walking among Seniors using Heel2Toe Sensor: A Proof-of-Concept Study (Preprint)

BACKGROUND Evidence shows that gait training in older adults is effective in improving gait patte... more BACKGROUND Evidence shows that gait training in older adults is effective in improving gait pattern but effects abate with cessation of training. During gait training therapists use a number of verbal and visual cues to place the heel first when stepping. This simple strategy changes posture from stooped to upright, lengthens the stride, stimulated pelvic and trunk rotation and facilitates arm swing. These principles guided the development of Heel2Toe sensor that provides real-time auditory feedback for each 'good' step, in which the heel strikes first. OBJECTIVE The objectives of this feasibility study are: (1) to contribute efficacy potential for home use of the Heel2Toe sensor; and (2) to estimate changes in gait parameters after five training sessions using the sensor. METHODS A pre-post study, with five training sessions over two weeks in the community were carried out, on a purposive sample of six seniors. Proportion of good steps, angular velocity at each step, and ca...

Research paper thumbnail of Association of Cannabis Use in Adolescence and Risk of Depression, Anxiety, and Suicidality in Young Adulthood

Research paper thumbnail of Real-time tracking of functional performance using accelerometers on the acute-stroke unit: proof-of-concept study

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2015

Background:Acute stroke care pathways are increasingly implemented to improve integration of best... more Background:Acute stroke care pathways are increasingly implemented to improve integration of best-practices, but evidence for impact on functional outcomes is not strong. Elements missing from care-pathways are those directly targeting improvement in function: sit-to-stand and time spent walking. The Stroke Team uses care-pathways to track functional capacity, what the patient can and cannot do, but performance on these key outcomes is difficult to track as the patient is observed by multiple people throughout the day. The purpose of this study is to demonstrate the feasibility and added-value of real-time tracking of patients’ mobility.Methods:A chart review was carried out to identify the extent to which functional capacity and performance is tracked routinely by the Stroke Team. Ethical approval was gained for routine use of accelerometers to be affixed to the unaffected thigh.Results:Swallowing, bladder control, toileting, and feeding were consistently tracked for ~90% of patien...

Research paper thumbnail of Development of a Prototype for a Bilingual Patient-Reported Outcome Measure of the Important Health Aspects of Quality of Life in People Living with HIV: The Preference Based HIV Index (PB-HIV)

Journal of Personalized Medicine, Dec 16, 2022

Research paper thumbnail of Identifying domains of health-related quality of life: the perspective of individuals with low back pain

Journal of Patient-Reported Outcomes

Background Identifying the most relevant HRQOL domains for LBP from the perspective of individual... more Background Identifying the most relevant HRQOL domains for LBP from the perspective of individuals with lived experience with LBP is necessary to prioritize domains that will be most informative for evaluating the impact of pain and interventions while overcoming the burden of using long-form assessment tools. This study aimed to identify which domains of HRQOL are most important from the perspective of individuals with chronic LBP. Methods Semi-structured interviews were conducted with 26 individuals with LBP. Participants first responded to questions related to the impact of their LBP on their HRQOL. Then, using a card sorting method, they were asked to select and indicate HRQOL domains that were most relevant to them from a list of 18 cards that represented different HRQOL domains. Participants were asked to explain the reasoning for their selection. Results Participants identified physical activity restriction (50%), severity of pain (31%), social activity restriction (23%), and...

Research paper thumbnail of Implications of the syntheses on definition, theory, and methods conducted by the Response Shift – in Sync Working Group

Quality of Life Research

Purpose Our aim is to advance response shift research by explicating the implications of publishe... more Purpose Our aim is to advance response shift research by explicating the implications of published syntheses by the Response Shift – in Sync Working Group in an integrative way and suggesting ways for improving the quality of future response shift studies. Methods Members of the Working Group further discussed the syntheses of the literature on definitions, theoretical underpinnings, operationalizations, and response shift methods. They outlined areas in need of further explication and refinement, and delineated additional implications for future research. Results First, the proposed response shift definition was further specified and its implications for the interpretation of results explicated in relation to former, published definitions. Second, the proposed theoretical model was further explained in relation to previous theoretical models and its implications for formulating research objectives highlighted. Third, ways to explore alternative explanations per response shift metho...

Research paper thumbnail of The Families First Program to Prevent Child Abuse: Results of a Cluster Randomized Controlled Trial in West Java, Indonesia

Prevention Science

The Families First parenting program is a 10-week paraprofessional-administered adaptation of the... more The Families First parenting program is a 10-week paraprofessional-administered adaptation of the Positive Discipline in Everyday Parenting program for West Java, Indonesia. It has not been tested in a randomized controlled trial. The objective was to evaluate the effects of Families First on physical and emotional punishment. We conducted a cluster randomized controlled trial and randomly assigned 20 rural and urban villages in West Java, Indonesia, to intervention or waitlist. Caregivers of children aged 0–7 years in intervention villages received Families First. Between 2017 and 2018, measurements were taken before randomization, immediately post-intervention, and 6 months post-intervention. Primary outcome was presence versus absence of caregiver-reported physical or emotional punishment immediately post-intervention. Intention-to-treat regression models accounted for clustering within villages and were run to compare between groups. Participants and study personnel could not be...

Research paper thumbnail of Action for better brain health among people living with HIV: protocol for a randomized controlled trial

BMC Infectious Diseases, 2021

Background Lifestyle changes can protect or improve brain health in older adults. However, sustai... more Background Lifestyle changes can protect or improve brain health in older adults. However, sustained lifestyle change is difficult for everyone and may be more difficult for those with executive dysfunction, including some people living with HIV. Thus, the key question is how we can improve adherence to the most promising interventions among people living with HIV experiencing cognitive difficulties. Goal management training is a cognitive rehabilitation program that targets executive dysfunction by teaching goal-directed behaviour and self-management. It is a promising means to improve adherence to lifestyle interventions. Objective To estimate the extent to which goal management training before a healthy lifestyle program is associated with greater adherence to health recommendations, achievement of health-related goals, and better brain health and health outcomes compared to the healthy lifestyle program alone among people living with HIV. Methods Brain Health Now cohort particip...

Research paper thumbnail of Association Between Patient Activation and Health Care Utilization After Thoracic and Abdominal Surgery

Research paper thumbnail of Impairment, disability and fatigue in multiple sclerosis

Caspian Journal of Internal Medicine, 2018

Background: Identifying the predictors of pain is important for both health professionals and res... more Background: Identifying the predictors of pain is important for both health professionals and researchers, because pain has repeatedly been found to be a strong predictor of activity limitations and participation restrictions. The objective of this study was to determine the predictors of pain presence and severity in a large, well-designed sample of community dwelling individuals with multiple sclerosis (MS). Methods: This was a cross-sectional study. A center-stratified random sample including 188 persons with MS were recruited from three major MS clinics in the Greater Montreal, Canada. Main outcomes included pain prevalence and severity. Predictor variables included depression, anxiety, perceived health status, fatigue, sleep problems, and perceived cognitive deficits. Participants completed three questionnaires: the first asked about the socio-demographic and clinical information of the subjects, the second assessed the pain characteristics of the subjects, and the third covere...

Research paper thumbnail of Correction to: Response shift in patient-reported outcomes: definition, theory, and a revised model

Quality of Life Research, 2021

A correction to this paper has been published: https://doi.org/10.1007/s11136-021-02890-6

Research paper thumbnail of Response shift in results of patient-reported outcome measures: a commentary to The Response Shift—in Sync Working Group initiative

Quality of Life Research, 2021

Purpose The Working Group undertook a critical, comprehensive synthesis of the response shift wor... more Purpose The Working Group undertook a critical, comprehensive synthesis of the response shift work to date. We aimed to (1) describe the rationale for this initiative; (2) outline how the Working Group operated; (3) summarize the papers that comprise this initiative; and (4) discuss the way forward. Methods Four interdisciplinary teams, consisting of response shift experts, external experts, and new investigators, prepared papers on (1) definitions and theoretical underpinnings, (2) operationalizations and response shift methods, (3) implications for healthcare decision-making, and (4) on the published magnitudes of response shift effects. Draft documents were discussed during a two-day meeting. Papers were reviewed by all members. Results Vanier and colleagues revised the formal definition and theory of response shift, and applied these in an amended, explanatory model of response shift. Sébille and colleagues conducted a critical examination of eleven response shift methods and co...

Research paper thumbnail of Clinically Assessed Walking Capacity Versus Real-World Walking Performance in People with Multiple Sclerosis

International Journal of MS Care, 2020

CME/CNE InformationActivity Available Online: To access the article, post-test, and evaluation on... more CME/CNE InformationActivity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org.Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS).Learning Objectives: 1) Differentiate between measurement tools for clinical walking capacity and for real-world performance. 2) Describe discrepancies between performance on a walking capacity test and real-world performance, and how these discrepancies vary between patients with high versus low walking capacity.Accreditation Statement:In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy ...

Research paper thumbnail of Effectiveness of a personalized health profile on specificity of self-management goals among people living with HIV in Canada: a protocol for a blinded pragmatic randomized controlled trial

MNI Open Research, 2020

Background: Goal setting is a crucial element in self-management of chronic diseases. Personalize... more Background: Goal setting is a crucial element in self-management of chronic diseases. Personalized outcome feedback is needed for goal setting, a requirement for behavior change. This study contributes to the understanding of the specificity of patient-formulated self-management goals by testing the effectiveness of a personalized health outcome profile. Objective: To estimate among people living with HIV, to what extent providing feedback on their health outcomes, compared to no feedback, will affect number and specificity of patient-formulated self-management goals. Methods: A personalized health outcome profile has been produced for individuals enrolled in a Canadian HIV Brain Health Now cohort study at cohort entry and at the last recorded visit. Participants will be randomized to receive or not “My Personal Brain Health Dashboard” prior to a goal setting exercise. Self-defined goals in free text will be collected through an online platform. Intervention and control groups will ...

Research paper thumbnail of A Catalyst for Transforming Health Systems and Person-Centred Care: Canadian National Position Statement on Patient-Reported Outcomes

Current Oncology, 2020

Background: Patient-reported outcomes (pros) are essential to capture the patient’s perspective a... more Background: Patient-reported outcomes (pros) are essential to capture the patient’s perspective and to influence care. Although pros and pro measures are known to have many important benefits, they are not consistently being used and there is there no Canadian pros oversight. The Position Statement presented here is the first step toward supporting the implementation of pros in the Canadian health care setting. Methods: The Canadian pros National Steering Committee drafted position statements, which were submitted for stakeholder feedback before, during, and after the first National Canadian Patient Reported Outcomes (canpros) scientific conference, 14–15 November 2019 in Calgary, Alberta. In addition to the stakeholder feedback cycle, a patient advocate group submitted a section to capture the patient voice. Results: The canpros Position Statement is an outcome of the 2019 canpros scientific conference, with an oncology focus. The Position Statement is categorized into 6 sections c...

Research paper thumbnail of What does pain in MS feel like? -A multicenter cross-sectional study of pain descriptors and characteristics

Internal Medicine and Care, 2017

Research paper thumbnail of Does Type of Pain Predict Pain Severity Changes in Individuals With Multiple Sclerosis? A Longitudinal Analysis Using Generalized Estimating Equations

Journal of Advances in Medical and Biomedical Research, 2019

Research paper thumbnail of Preoperative Risk Index Among Patients Undergoing Thyroid or Parathyroid Surgery

JAMA Otolaryngology–Head & Neck Surgery, 2019

Research paper thumbnail of Factors Associated With Participation in Life Situations for Adults With Stroke: A Systematic Review

Archives of Physical Medicine and Rehabilitation, 2018

Research paper thumbnail of Properties of a brief assessment tool for longitudinal measurement of cognition in people living with HIV

Research paper thumbnail of Real-Time Auditory Feedback Induced Adaptation to Walking among Seniors using Heel2Toe Sensor: A Proof-of-Concept Study (Preprint)

BACKGROUND Evidence shows that gait training in older adults is effective in improving gait patte... more BACKGROUND Evidence shows that gait training in older adults is effective in improving gait pattern but effects abate with cessation of training. During gait training therapists use a number of verbal and visual cues to place the heel first when stepping. This simple strategy changes posture from stooped to upright, lengthens the stride, stimulated pelvic and trunk rotation and facilitates arm swing. These principles guided the development of Heel2Toe sensor that provides real-time auditory feedback for each 'good' step, in which the heel strikes first. OBJECTIVE The objectives of this feasibility study are: (1) to contribute efficacy potential for home use of the Heel2Toe sensor; and (2) to estimate changes in gait parameters after five training sessions using the sensor. METHODS A pre-post study, with five training sessions over two weeks in the community were carried out, on a purposive sample of six seniors. Proportion of good steps, angular velocity at each step, and ca...

Research paper thumbnail of Association of Cannabis Use in Adolescence and Risk of Depression, Anxiety, and Suicidality in Young Adulthood

Research paper thumbnail of Real-time tracking of functional performance using accelerometers on the acute-stroke unit: proof-of-concept study

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2015

Background:Acute stroke care pathways are increasingly implemented to improve integration of best... more Background:Acute stroke care pathways are increasingly implemented to improve integration of best-practices, but evidence for impact on functional outcomes is not strong. Elements missing from care-pathways are those directly targeting improvement in function: sit-to-stand and time spent walking. The Stroke Team uses care-pathways to track functional capacity, what the patient can and cannot do, but performance on these key outcomes is difficult to track as the patient is observed by multiple people throughout the day. The purpose of this study is to demonstrate the feasibility and added-value of real-time tracking of patients’ mobility.Methods:A chart review was carried out to identify the extent to which functional capacity and performance is tracked routinely by the Stroke Team. Ethical approval was gained for routine use of accelerometers to be affixed to the unaffected thigh.Results:Swallowing, bladder control, toileting, and feeding were consistently tracked for ~90% of patien...