This document discusses optimizing outcomes in bipolar disorder by measuring and maximizing quality of life. It introduces the concept of quality of life and why assessing quality of life is important in clinical practice for people with bipolar disorder. It details the development of a specific scale called the Quality of Life in Bipolar Disorder (QoL.BD) Scale over several studies. It discusses using the QoL.BD scale in clinical practice, including how long it takes to complete, what mood phases it should be applied in, and how to incorporate it into routine practice. Next steps discussed include further developing an online version of the QoL.BD resource center.
T Sornasse Elan Chi Accelerating Proof Of Concept 2010tsornasse
This document discusses opportunities and challenges for using biomarkers to accelerate proof-of-concept studies in neurodegenerative diseases. It highlights initiatives like ADNI that have advanced biomarkers for disease state and progression. These biomarkers allow for earlier patient enrichment, more sensitive endpoints, and smaller clinical trials. Biomarkers can also provide insights into drug-target engagement and pharmacodynamics/toxicodynamics. Integrating biomarkers throughout development could enable faster entry to Phase 3 and higher chances of success for disease-modifying therapies to address the growing burden of neurodegenerative diseases.
Changes in Metacognition, Obsessional Beliefs, and OCD Severity over the Cour...Rogers Memorial Hospital
Rachel C. Leonard, Ph.D.1, Chad T. Wetterneck, Ph.D. 2, Tannah Little, B.S. 2, & Bradley C. Riemann, Ph.D. 1
Both metacognitions (MC) and obsessional beliefs (OB) are related to OCD severity, however, only one study has compared them related to treatment outcome. Solem and colleagues (2009) found that changes in MC predicted changes in OCD severity above and beyond changes in depression and OB. Replication of this study is needed. Therefore, the present study examined whether changes in cognitions (OB about responsibility/threat estimation and perfectionism/certainty) and MC (including beliefs about the importance and need to control thoughts) predicted changes in OCD symptom severity following treatment. Results indicated that, when controlling for changes in depressive symptoms, neither changes in OB nor changes in MC significantly predicted changes in OCD symptom severity.
This study examines the neuropsychological symptom dimensions in bipolar disorder and schizophrenia. The authors previously identified 6 factors that describe neuropsychological functioning in schizophrenia: Attention, Working Memory, Learning, Verbal Knowledge, Non-Verbal Functions, Ideational Fluency. The goal of this study was to investigate whether this same 6-factor structure applies to bipolar disorder. Exploratory and confirmatory factor analyses found that the same 6-factor structure fit the data in both diagnostic groups, though patients with schizophrenia had markedly worse performance on the Attention and Non-Verbal Functioning factors compared to bipolar patients. This suggests that while the underlying neuropsychological structure is similar between the groups, the profile of impairments varies by
The Karnofsky Performance Status (KPS) scale aims to measure patient independence and functional status. This study evaluated the reliability and validity of the KPS in patients with advanced cancer. The KPS showed moderately high interrater reliability when scored by different professionals. Home evaluations tended to yield lower scores than clinic evaluations. Several physical functioning variables strongly correlated with KPS scores, supporting its construct validity. Initial KPS scores predicted early death, but high scores did not ensure long survival. Rapidly declining KPS could predict death within a few months.
Integrated Performance Assessment: Linking Individual Development to Industry...tmccowin
This document summarizes a presentation on integrating performance assessments to link individual development to industry standards. The presentation includes an agenda that covers literature review, developing a performance inventory scale, and having participants use the inventory. The literature review section discusses symptoms like professionals needing to continually update skills. The research purpose is to provide a valid methodology to guide career planning and professional development. The research question asks about valid and reliable competencies for assessing IT professionals. The literature search found 26 references and 18 relevant research studies. Study findings covered topics like tools for instructional developers and expert practices.
Oliva esther qol symposium eurasian st. petersburg 2016EAFO2014
Patients with hematological malignancies experience quality of life issues related to their disease and treatment. Common problems include fatigue, pain, and disruptions to daily activities and social relationships. Conditions like multiple myeloma, myelodysplastic syndromes, and chronic myeloid leukemia are associated with fatigue, while neutropenia from treatments can cause weakness and infections. Transfusions for anemia in myelodysplastic syndromes negatively impact quality of life. Younger patients with chronic myeloid leukemia have greater impairments. Assessments of quality of life and symptoms provide important information for evaluating patients' disease status and response to treatment over time in clinical practice.
The document provides an overview of psycho-oncology. It discusses the mental health consequences of cancer at diagnosis, during active treatment, and for survivors. It covers common issues like maladaptation, mental disorders, suicide, and impact on quality of life and compliance. It also reviews psychiatric side effects of cancer treatments and management approaches.
Biomarkers for early diagnosis ppt by Dr C P PRINCEDR.PRINCE C P
A biomarker is a characteristic ‘substance’, analyte, or otherwise a ‘thing’ that can be objectively measured as an indicator of normal biological processes, pathogenic processes or a pharmacological response to a therapeutic intervention. These are used for many purposes including disease diagnosis and prognosis, prediction and assessment of treatment response.
Biomarkers can be characteristic biological properties or molecules that can be detected and measured in parts of the body like the blood or tissue. They may indicate either normal or diseased processes in the body.
Biomarkers can be specific cells, molecules, or genes, gene products, enzymes, or hormones.
T Sornasse Elan Chi Accelerating Proof Of Concept 2010tsornasse
This document discusses opportunities and challenges for using biomarkers to accelerate proof-of-concept studies in neurodegenerative diseases. It highlights initiatives like ADNI that have advanced biomarkers for disease state and progression. These biomarkers allow for earlier patient enrichment, more sensitive endpoints, and smaller clinical trials. Biomarkers can also provide insights into drug-target engagement and pharmacodynamics/toxicodynamics. Integrating biomarkers throughout development could enable faster entry to Phase 3 and higher chances of success for disease-modifying therapies to address the growing burden of neurodegenerative diseases.
Changes in Metacognition, Obsessional Beliefs, and OCD Severity over the Cour...Rogers Memorial Hospital
Rachel C. Leonard, Ph.D.1, Chad T. Wetterneck, Ph.D. 2, Tannah Little, B.S. 2, & Bradley C. Riemann, Ph.D. 1
Both metacognitions (MC) and obsessional beliefs (OB) are related to OCD severity, however, only one study has compared them related to treatment outcome. Solem and colleagues (2009) found that changes in MC predicted changes in OCD severity above and beyond changes in depression and OB. Replication of this study is needed. Therefore, the present study examined whether changes in cognitions (OB about responsibility/threat estimation and perfectionism/certainty) and MC (including beliefs about the importance and need to control thoughts) predicted changes in OCD symptom severity following treatment. Results indicated that, when controlling for changes in depressive symptoms, neither changes in OB nor changes in MC significantly predicted changes in OCD symptom severity.
This study examines the neuropsychological symptom dimensions in bipolar disorder and schizophrenia. The authors previously identified 6 factors that describe neuropsychological functioning in schizophrenia: Attention, Working Memory, Learning, Verbal Knowledge, Non-Verbal Functions, Ideational Fluency. The goal of this study was to investigate whether this same 6-factor structure applies to bipolar disorder. Exploratory and confirmatory factor analyses found that the same 6-factor structure fit the data in both diagnostic groups, though patients with schizophrenia had markedly worse performance on the Attention and Non-Verbal Functioning factors compared to bipolar patients. This suggests that while the underlying neuropsychological structure is similar between the groups, the profile of impairments varies by
The Karnofsky Performance Status (KPS) scale aims to measure patient independence and functional status. This study evaluated the reliability and validity of the KPS in patients with advanced cancer. The KPS showed moderately high interrater reliability when scored by different professionals. Home evaluations tended to yield lower scores than clinic evaluations. Several physical functioning variables strongly correlated with KPS scores, supporting its construct validity. Initial KPS scores predicted early death, but high scores did not ensure long survival. Rapidly declining KPS could predict death within a few months.
Integrated Performance Assessment: Linking Individual Development to Industry...tmccowin
This document summarizes a presentation on integrating performance assessments to link individual development to industry standards. The presentation includes an agenda that covers literature review, developing a performance inventory scale, and having participants use the inventory. The literature review section discusses symptoms like professionals needing to continually update skills. The research purpose is to provide a valid methodology to guide career planning and professional development. The research question asks about valid and reliable competencies for assessing IT professionals. The literature search found 26 references and 18 relevant research studies. Study findings covered topics like tools for instructional developers and expert practices.
Oliva esther qol symposium eurasian st. petersburg 2016EAFO2014
Patients with hematological malignancies experience quality of life issues related to their disease and treatment. Common problems include fatigue, pain, and disruptions to daily activities and social relationships. Conditions like multiple myeloma, myelodysplastic syndromes, and chronic myeloid leukemia are associated with fatigue, while neutropenia from treatments can cause weakness and infections. Transfusions for anemia in myelodysplastic syndromes negatively impact quality of life. Younger patients with chronic myeloid leukemia have greater impairments. Assessments of quality of life and symptoms provide important information for evaluating patients' disease status and response to treatment over time in clinical practice.
The document provides an overview of psycho-oncology. It discusses the mental health consequences of cancer at diagnosis, during active treatment, and for survivors. It covers common issues like maladaptation, mental disorders, suicide, and impact on quality of life and compliance. It also reviews psychiatric side effects of cancer treatments and management approaches.
Biomarkers for early diagnosis ppt by Dr C P PRINCEDR.PRINCE C P
A biomarker is a characteristic ‘substance’, analyte, or otherwise a ‘thing’ that can be objectively measured as an indicator of normal biological processes, pathogenic processes or a pharmacological response to a therapeutic intervention. These are used for many purposes including disease diagnosis and prognosis, prediction and assessment of treatment response.
Biomarkers can be characteristic biological properties or molecules that can be detected and measured in parts of the body like the blood or tissue. They may indicate either normal or diseased processes in the body.
Biomarkers can be specific cells, molecules, or genes, gene products, enzymes, or hormones.
This document discusses relevant endpoints for clinical trials involving patients with advanced breast cancer. It notes that these patients are a heterogeneous population with different disease characteristics and needs. While traditional endpoints like progression-free survival are important, patient-reported outcomes that measure symptom control, physical functioning, and quality of life are also critical given the focus on long-term management of the disease. The document recommends that phase III trials incorporate patient-reported outcomes to better assess new treatments' impact on symptoms and functioning from the patient perspective.
1. The document examines how self-reported cognitive difficulties and distress are associated with mood, quality of life, and actual cognitive ability in older adults with normal cognition, mild cognitive impairment, and mild Alzheimer's disease.
2. Among those with MMSE scores over 20, self-reported cognitive difficulties and distress were strongly correlated with each other and associated with lower mood and quality of life.
3. Participants with mild cognitive impairment reported lower mood, quality of life, and higher distress than those with mild Alzheimer's disease, despite having similar cognitive declines, suggesting metacognitive abilities impact experience of decline.
This document discusses prion diseases like Creutzfeldt-Jakob disease (CJD). It covers diagnosing CJD using tools like EEG, MRI, and spinal fluid tests. It also discusses managing patient care which involves symptom treatment, limiting overstimulation, and hospice support. The risks of CJD transmission are also addressed, noting standard precautions are usually sufficient. Future research aims to improve diagnosis and develop treatments for prion diseases.
The document discusses how clinical decision making can be informed by predictive models derived from large datasets that analyze factors like a patient's medical history, functional status, and biomarkers to estimate health outcomes and risks. It provides examples of studies that have developed tools to predict post-operative complications, chemotherapy toxicity, and life expectancy based on comorbidities and functional status. The document also considers how advances in data collection through technologies like wearables and sensors could generate even larger datasets to improve prediction models used in clinical practice.
This document discusses patient-reported outcomes (PROs) and their importance in clinical research. It covers:
1) Why PROs that measure how patients feel and function are increasingly important primary outcomes, as they better reflect the impacts of chronic diseases than physiological tests alone.
2) The different types of PRO instruments and their properties, such as discriminating between patient groups or measuring changes over time.
3) Key concepts in interpreting PRO results, including the minimal important difference (MID) - the smallest difference perceived as important by patients - and using it to determine meaningful treatment benefits.
Correlation between Demographic, Socio-economic, and Cancer-Specific Factors with Quality of Life Scores among Newly-Diagnosed Cancer Patients of the Medical Oncology Clinics of the Philippine General Hospital Cancer Institute
https://www.actamedicaphilippina.org/issue/1102
This document summarizes factors that influence quality of life in adult patients with primary brain tumors. It discusses how quality of life domain scores may be different for high-grade, low-grade, and benign brain tumors. Several patient, treatment, and sociocultural factors can influence quality of life scores. Pretreatment baseline quality of life scores have also been shown to predict survival outcomes. The document reviews quality of life issues specifically for high-grade gliomas and low-grade gliomas.
This study examined quality of life (QoL) in 124 Hodgkin's lymphoma patients undergoing autologous hematopoietic stem cell transplantation to determine if pretreatment QoL has prognostic value. QoL was significantly worse in patients compared to controls, especially in physical, role-physical, emotional, and social functioning. Patients with severe or critical QoL impairment before transplantation had significantly lower overall survival rates than those with no or mild impairment. While event-free survival was also lower in the more impaired group, the difference was not significant. This suggests pretreatment QoL may be a feasible prognostic factor for Hodgkin's lymphoma patients undergoing this procedure.
This document discusses cancer in older adults and the use of comprehensive geriatric assessment (CGA) to evaluate older cancer patients. It makes three key points:
1. CGA can help oncologists define "elderly" cancer patients and evaluate them for treatment. Factors like frailty, comorbidities, and functional status are more important than age alone.
2. CGA has prognostic value, as it can identify risk factors for toxicity from chemotherapy and predict patient outcomes. Frail older patients have higher risks of adverse events.
3. CGA tools have been developed that use factors like frailty, blood pressure, liver/kidney function to predict risks of severe toxicity and categorize
Ambulatory Mental Health Visits and Use of Psychotropic Medicines by Cancer S...HMO Research Network
The document examines the utilization of mental health services and medications among cancer survivors' spouses. It finds that younger spouses of cancer survivors use ambulatory mental health services and psychotropic medications at higher rates than spouses of non-cancer individuals. A cancer diagnosis within the past year significantly predicts higher utilization of mental health services. However, cancer diagnosis and factors are not significant predictors of prescribed psychotropic medication use. The study is limited by a lack of data on cancer stage and treatment, as well as spouses' prior mental health.
This document discusses recovery in bipolar disorder. It begins with an overview of bipolar disorder and notes its prevalence, chronicity, disability, and high rates of comorbidities like substance abuse and anxiety. It then discusses gaps in bipolar research, including a lack of qualitative studies and focus on quality of life outcomes rather than just symptoms. The document outlines the speaker's research questions on factors influencing quality of life and recovery in bipolar disorder. It describes their community-based participatory research approach, including engaging people with bipolar disorder. Finally, it summarizes two studies on understanding recovery from the perspectives of those with bipolar disorder and exploring the impacts of constructing narrative accounts of recovery.
Functional Independence Measure (FIM)
Is an 18-item, 7-level ordinal scale
Is designed to assess areas of dysfunction in activities that commonly occur
The scale has few cognitive, behavioral, and communication-related functional items
Is not specific for spinal cord injuries but is designed to assess neurological, musculoskeletal, and other disorders.
This document summarizes research on prion diseases like Creutzfeldt-Jakob disease (CJD). It discusses the causes of prion diseases including genetic mutations and spontaneous misfolding. The document outlines the clinical diagnosis and tests used to diagnose CJD. It also describes recent investigational treatments for CJD like quinacrine, pentosan polysulfate, and doxycycline. Finally, it provides an overview of resources for patients and their families dealing with prion diseases.
HEALTH RELATED QUALITY OF LIFE OF HEAD AND NECK CANCER PATIENTS TREATED WITH ...CayoDental
This study evaluated changes in health-related quality of life (HRQOL) in 47 head and neck cancer patients undergoing chemoradiation therapy. HRQOL was assessed before treatment, at 6 weeks, and 3 months using the EORTC QLQ-C30 and HN35 questionnaires. The overall HRQOL significantly decreased at 6 weeks but improved by 3 months, though still lower than baseline. Functional scores increased at 6 weeks but decreased below baseline by 3 months. Symptom scores significantly improved at 6 and 3 months. The results suggest chemoradiation provides HRQOL benefits but side effects deteriorate functional domains over time, indicating follow-up care should address side effect management.
Care of Sickle Cell Disease Patients: Process Improvement & Change with NursesTosin Ola-Weissmann
The document discusses implementing a Sickle Cell Vulnerability Assessment (SCVA) to improve care for sickle cell disease patients. It notes disparities in care for this vulnerable population and cites regulatory drivers and benchmarks supporting standardized assessment. A proposed SCVA methodology would assess medical history, vulnerabilities, and pain for individualized care plans. Implementing the SCVA using Lewin's change model and PDCA cycles is outlined over six weeks, with strategies including staff education and surveys to evaluate outcomes.
This document provides an overview of measuring the burden of disease. It discusses the evolution of summary measures of population health, including health expectancies like HALE and QALE, and health gaps like DALYs. The Global Burden of Disease study is introduced, which developed the DALY measure. DALYs combine years of life lost to premature mortality and years lived with disability. The document explains how DALYs are calculated, including incorporating social values through disability weights, age weights, and time discounting. Criticisms of the GBD methodology and DALY measure are also summarized.
This study examined the association between quality of life, disability, and sexual functioning in 53 Nigerian stroke survivors. The results showed a high prevalence of sexual dysfunction (85%) and disability. Absence of hypertension and lower disability scores were associated with better quality of life. Being male and having hypertension were associated with better sexual functioning. The study recommends focusing on sexual counseling during rehabilitation to reduce disability among stroke survivors.
Health: objective, subjective, or other?Mark Sullivan
In this presentation, I examine how we define and perceive health. Is it an objective, observed phenomenon? Is it a subjective, experienced phenomenon? Or some combination of the two, captured by Health-Related Quality of Life (HRQL) measures? Here, I argue that health is not objective or subjective or a combination, but the capacity for meaningful action.
This document outlines Dr. Shanu Soni's mid-term thesis presentation on the burden and quality of life of caregivers of patients with dissociative disorder. The presentation will assess caregiver burden using the Burden Assessment Schedule and quality of life using the WHO QOL-BREF scale in a sample of 65 caregivers. A literature review presented findings from previous studies that found higher caregiver burden was associated with greater illness severity and lower quality of life. The presentation outlines the study aims, materials and methods, results from previous studies, and pending statistical analysis before completion of the thesis.
This document summarizes lessons learned from involving consumers in three randomized controlled trials (RCTs) of adjunctive psychosocial interventions for bipolar disorder. It describes how a Consumer Advisory Group provided input that shaped the priorities, ethical decisions, and design of an ongoing RCT trial called ORBIT. Specifically, the group helped identify quality of life as an important outcome to assess, emphasized autonomy in intervention delivery, and provided feedback that improved online intervention videos and engagement. While consumer involvement increased the rigor and relevance of the research, it also introduced challenges like balancing diverse perspectives and managing risks when working with sometimes unwell participants. Overall, the experience highlighted the value of incorporating consumer voices and expertise into mental health intervention design and trials.
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This document discusses relevant endpoints for clinical trials involving patients with advanced breast cancer. It notes that these patients are a heterogeneous population with different disease characteristics and needs. While traditional endpoints like progression-free survival are important, patient-reported outcomes that measure symptom control, physical functioning, and quality of life are also critical given the focus on long-term management of the disease. The document recommends that phase III trials incorporate patient-reported outcomes to better assess new treatments' impact on symptoms and functioning from the patient perspective.
1. The document examines how self-reported cognitive difficulties and distress are associated with mood, quality of life, and actual cognitive ability in older adults with normal cognition, mild cognitive impairment, and mild Alzheimer's disease.
2. Among those with MMSE scores over 20, self-reported cognitive difficulties and distress were strongly correlated with each other and associated with lower mood and quality of life.
3. Participants with mild cognitive impairment reported lower mood, quality of life, and higher distress than those with mild Alzheimer's disease, despite having similar cognitive declines, suggesting metacognitive abilities impact experience of decline.
This document discusses prion diseases like Creutzfeldt-Jakob disease (CJD). It covers diagnosing CJD using tools like EEG, MRI, and spinal fluid tests. It also discusses managing patient care which involves symptom treatment, limiting overstimulation, and hospice support. The risks of CJD transmission are also addressed, noting standard precautions are usually sufficient. Future research aims to improve diagnosis and develop treatments for prion diseases.
The document discusses how clinical decision making can be informed by predictive models derived from large datasets that analyze factors like a patient's medical history, functional status, and biomarkers to estimate health outcomes and risks. It provides examples of studies that have developed tools to predict post-operative complications, chemotherapy toxicity, and life expectancy based on comorbidities and functional status. The document also considers how advances in data collection through technologies like wearables and sensors could generate even larger datasets to improve prediction models used in clinical practice.
This document discusses patient-reported outcomes (PROs) and their importance in clinical research. It covers:
1) Why PROs that measure how patients feel and function are increasingly important primary outcomes, as they better reflect the impacts of chronic diseases than physiological tests alone.
2) The different types of PRO instruments and their properties, such as discriminating between patient groups or measuring changes over time.
3) Key concepts in interpreting PRO results, including the minimal important difference (MID) - the smallest difference perceived as important by patients - and using it to determine meaningful treatment benefits.
Correlation between Demographic, Socio-economic, and Cancer-Specific Factors with Quality of Life Scores among Newly-Diagnosed Cancer Patients of the Medical Oncology Clinics of the Philippine General Hospital Cancer Institute
https://www.actamedicaphilippina.org/issue/1102
This document summarizes factors that influence quality of life in adult patients with primary brain tumors. It discusses how quality of life domain scores may be different for high-grade, low-grade, and benign brain tumors. Several patient, treatment, and sociocultural factors can influence quality of life scores. Pretreatment baseline quality of life scores have also been shown to predict survival outcomes. The document reviews quality of life issues specifically for high-grade gliomas and low-grade gliomas.
This study examined quality of life (QoL) in 124 Hodgkin's lymphoma patients undergoing autologous hematopoietic stem cell transplantation to determine if pretreatment QoL has prognostic value. QoL was significantly worse in patients compared to controls, especially in physical, role-physical, emotional, and social functioning. Patients with severe or critical QoL impairment before transplantation had significantly lower overall survival rates than those with no or mild impairment. While event-free survival was also lower in the more impaired group, the difference was not significant. This suggests pretreatment QoL may be a feasible prognostic factor for Hodgkin's lymphoma patients undergoing this procedure.
This document discusses cancer in older adults and the use of comprehensive geriatric assessment (CGA) to evaluate older cancer patients. It makes three key points:
1. CGA can help oncologists define "elderly" cancer patients and evaluate them for treatment. Factors like frailty, comorbidities, and functional status are more important than age alone.
2. CGA has prognostic value, as it can identify risk factors for toxicity from chemotherapy and predict patient outcomes. Frail older patients have higher risks of adverse events.
3. CGA tools have been developed that use factors like frailty, blood pressure, liver/kidney function to predict risks of severe toxicity and categorize
Ambulatory Mental Health Visits and Use of Psychotropic Medicines by Cancer S...HMO Research Network
The document examines the utilization of mental health services and medications among cancer survivors' spouses. It finds that younger spouses of cancer survivors use ambulatory mental health services and psychotropic medications at higher rates than spouses of non-cancer individuals. A cancer diagnosis within the past year significantly predicts higher utilization of mental health services. However, cancer diagnosis and factors are not significant predictors of prescribed psychotropic medication use. The study is limited by a lack of data on cancer stage and treatment, as well as spouses' prior mental health.
This document discusses recovery in bipolar disorder. It begins with an overview of bipolar disorder and notes its prevalence, chronicity, disability, and high rates of comorbidities like substance abuse and anxiety. It then discusses gaps in bipolar research, including a lack of qualitative studies and focus on quality of life outcomes rather than just symptoms. The document outlines the speaker's research questions on factors influencing quality of life and recovery in bipolar disorder. It describes their community-based participatory research approach, including engaging people with bipolar disorder. Finally, it summarizes two studies on understanding recovery from the perspectives of those with bipolar disorder and exploring the impacts of constructing narrative accounts of recovery.
Functional Independence Measure (FIM)
Is an 18-item, 7-level ordinal scale
Is designed to assess areas of dysfunction in activities that commonly occur
The scale has few cognitive, behavioral, and communication-related functional items
Is not specific for spinal cord injuries but is designed to assess neurological, musculoskeletal, and other disorders.
This document summarizes research on prion diseases like Creutzfeldt-Jakob disease (CJD). It discusses the causes of prion diseases including genetic mutations and spontaneous misfolding. The document outlines the clinical diagnosis and tests used to diagnose CJD. It also describes recent investigational treatments for CJD like quinacrine, pentosan polysulfate, and doxycycline. Finally, it provides an overview of resources for patients and their families dealing with prion diseases.
HEALTH RELATED QUALITY OF LIFE OF HEAD AND NECK CANCER PATIENTS TREATED WITH ...CayoDental
This study evaluated changes in health-related quality of life (HRQOL) in 47 head and neck cancer patients undergoing chemoradiation therapy. HRQOL was assessed before treatment, at 6 weeks, and 3 months using the EORTC QLQ-C30 and HN35 questionnaires. The overall HRQOL significantly decreased at 6 weeks but improved by 3 months, though still lower than baseline. Functional scores increased at 6 weeks but decreased below baseline by 3 months. Symptom scores significantly improved at 6 and 3 months. The results suggest chemoradiation provides HRQOL benefits but side effects deteriorate functional domains over time, indicating follow-up care should address side effect management.
Care of Sickle Cell Disease Patients: Process Improvement & Change with NursesTosin Ola-Weissmann
The document discusses implementing a Sickle Cell Vulnerability Assessment (SCVA) to improve care for sickle cell disease patients. It notes disparities in care for this vulnerable population and cites regulatory drivers and benchmarks supporting standardized assessment. A proposed SCVA methodology would assess medical history, vulnerabilities, and pain for individualized care plans. Implementing the SCVA using Lewin's change model and PDCA cycles is outlined over six weeks, with strategies including staff education and surveys to evaluate outcomes.
This document provides an overview of measuring the burden of disease. It discusses the evolution of summary measures of population health, including health expectancies like HALE and QALE, and health gaps like DALYs. The Global Burden of Disease study is introduced, which developed the DALY measure. DALYs combine years of life lost to premature mortality and years lived with disability. The document explains how DALYs are calculated, including incorporating social values through disability weights, age weights, and time discounting. Criticisms of the GBD methodology and DALY measure are also summarized.
This study examined the association between quality of life, disability, and sexual functioning in 53 Nigerian stroke survivors. The results showed a high prevalence of sexual dysfunction (85%) and disability. Absence of hypertension and lower disability scores were associated with better quality of life. Being male and having hypertension were associated with better sexual functioning. The study recommends focusing on sexual counseling during rehabilitation to reduce disability among stroke survivors.
Health: objective, subjective, or other?Mark Sullivan
In this presentation, I examine how we define and perceive health. Is it an objective, observed phenomenon? Is it a subjective, experienced phenomenon? Or some combination of the two, captured by Health-Related Quality of Life (HRQL) measures? Here, I argue that health is not objective or subjective or a combination, but the capacity for meaningful action.
This document outlines Dr. Shanu Soni's mid-term thesis presentation on the burden and quality of life of caregivers of patients with dissociative disorder. The presentation will assess caregiver burden using the Burden Assessment Schedule and quality of life using the WHO QOL-BREF scale in a sample of 65 caregivers. A literature review presented findings from previous studies that found higher caregiver burden was associated with greater illness severity and lower quality of life. The presentation outlines the study aims, materials and methods, results from previous studies, and pending statistical analysis before completion of the thesis.
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This document summarizes lessons learned from involving consumers in three randomized controlled trials (RCTs) of adjunctive psychosocial interventions for bipolar disorder. It describes how a Consumer Advisory Group provided input that shaped the priorities, ethical decisions, and design of an ongoing RCT trial called ORBIT. Specifically, the group helped identify quality of life as an important outcome to assess, emphasized autonomy in intervention delivery, and provided feedback that improved online intervention videos and engagement. While consumer involvement increased the rigor and relevance of the research, it also introduced challenges like balancing diverse perspectives and managing risks when working with sometimes unwell participants. Overall, the experience highlighted the value of incorporating consumer voices and expertise into mental health intervention design and trials.
This document introduces CREST.BD's Bipolar Wellness Centre, which provides online interventions and knowledge translation strategies to engage patients with bipolar disorder. It shares results from a mixed methods analysis evaluating the impact of engagement strategies. The strategies included webinars, videos, workshops, and individual sessions. Quantitative results found improvements in quality of life and recovery scores. Qualitative interviews identified themes around implementing strategies learned and preferences for different engagement approaches. The take home message is that diverse knowledge translation strategies can impact outcomes and engagement when developed with attention to online engagement mechanisms.
The BYAP project aims to identify self-management strategies used by youth with bipolar disorder to stay well and increase youth engagement in mental health research. The project team conducted focus groups with 21 youth on Vancouver Island who have bipolar disorder. Thematic analysis identified key self-management strategies around healthy lifestyle, social support networks, and in-the-moment coping techniques. Preliminary results suggest youth self-management knowledge is valuable but finding health information requires proactivity. While CBPR projects require effort, engaging youth in the research process yields worthwhile results.
The document discusses social stigma as it relates to mental illness. It notes that social stigma involves stereotypes and discrimination against stigmatized groups by social groups, and can lead to the development of self-stigma. Several studies are cited that show high percentages of people who would not be friends with, hire, or think highly of those with mental illness. The negative effects of stigma are said to outweigh the negative effects of mental illness itself. Several theories for why stigma exists are discussed. Interventions shown to effectively reduce stigma include certain educational interventions and those incorporating contact with people with mental illness.
A warm welcome to CRESTBD's webinar slides for "Stigma123 & Bipolar Disorder"! An idea readily accepted in academic literature, the three levels of stigma is not yet a robust part of the mainstream discussion about stigma. We'll share both the lived experience and research perspectives of our team.
Enjoy these webinar slides from 'Bipolar Creativity: The Evidence and the Gaps', co-hosted by CREST.BD and the Sean Costello Memorial Fund for Bipolar Research. In this webinar, Dr. Sheri Johnson, Dr. Erin Michalak and Debbie Ann Smith discussed recent research findings exploring the relationship between creativity and bipolar disorder. You can also watch the video at: http://ow.ly/R9OtU
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between work, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you flourish in your work life.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between study, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you flourish in your study life.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between spirituality, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you flourish in your spiritual life.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between sleep, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you optimally manage your sleep.
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A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between mood, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you optimally manage your mood.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between money, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you manage your finances.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between leisure, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you flourish in your leisure life.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These webinar slides provide a summary of current research evidence on the relationship between independence, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you establish independence in your life.
A warm welcome to CREST.BD’s Bipolar Wellness Centre webinar series! These slides provide a summary of current research evidence on the relationship between identity, bipolar disorder (BD) and quality of life (QoL), as well as pointing you to some tools and resources to help you establish a stable sense of self.
This document outlines a webinar on the importance of home life for those with bipolar disorder. The webinar discusses how aspects of home like tidiness and organization can impact mood episodes. It provides tips for goal setting using the SMART criteria to improve home routines. Suggestions include starting small, rewarding accomplishments, and practicing self-compassion. Resources for organizing chores and dealing with clutter compulsions are also presented.
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Cell Therapy Expansion and Challenges in Autoimmune DiseaseHealth Advances
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O estabelecimento da amamentação e o manejo das principais intercorrências é contemplada.
Recomendamos muito.
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Esta publicação só está disponível em inglês até o momento.
Prof. Marcus Renato de Carvalho
www.agostodourado.com
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Optimizing Outcomes in Bipolar Disorder: Measuring and Maximising Quality of Life
1. Optimizing Outcomes in Bipolar Disorder:
Measuring and Maximising Quality of Life
Erin Michalak, Associate Professor,
Department of Psychiatry, University of British Columbia
2. With special thanks to:
Dr. Greg Murray Victoria Maxwell Dr. Sagar Parikh
University of Swinburne, Crazy for Life, Co. University Health Network
Melbourne, Australia Sunshine Coast, BC University of Toronto
In partnership with: With support from:
A
SystemAction
Initiative
Initiative
3. Disclosures (lifetime)
Speaker/advisory board/consulting honoraria:
• CANMAT
• Lundbeck
Grant funding:
• Canadian Institutes of Health Research
• Canadian Psychiatric Association/Healthy Minds
• Michael Smith Foundation for Health Research
• Coast Capital Depression Research Fund
• Vancouver Coastal Health Research Institute
Stockholder: None
4. Learning objectives
• Introduce the concept and value of assessing QoL
in clinical settings;
• Introduce a specific scale to measure QoL in
people with BD and discuss its application in
clinical practice.
5. Outline
Part 1. What is QoL?
Part 2. Why assess QoL in clinical practice?
Part 3. Development of the QoL.BD
Part 4. Using the QoL.BD in clinical practice
Part 5. Next steps
Part 6. Q & A
7. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
- World Health Organization, 1995
Kuyken W. et al. World Health Organization Quality of Life Assessment (WHOQOL) - Position Paper from the World
Health Organization. Soc Sci and Med 41 (1995), 10; 1403-1409.
8. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
- where possible, subjectively assessed
9. “Individuals’ Perceptions”
The Schedule for the Evaluation of Individual Quality of
Life (SEIQoL)
• Use of SEIQoL assessment
method to evaluate
‘symptom interference’
with QoL
• Assessing QoL in a single
individual over time
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
10. “Individuals’ Perceptions”
Symptom
bother
50%
• Disk is presented to patients
with equal space given to
QoL and symptom
interference
• Patients rotate colours to
reflect impression of how
QoL much symptoms have
50% interfered with overall QoL in
the previous week
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
11. Nurse's assessment using SEIQoL disk to display nurse’s
perception of patient ‘symptom interference’ with QoL
Symptom
Bother
62%
QoL
38%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
12. Doctor's assessment using SEIQoL disk to display nurse’s
perception of patient ‘symptom interference’ with QoL
QoL
28%
Symptom
Bother
72%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999; 17:3603-3611.
13. Patient’s assessment using SEIQoL disk to display
‘symptom interference’ with QoL
Symptom
Bother
18%
QoL
82%
Waldron et al. Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual. J Clin Oncol 1999: 17:3603-
3611.
14. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
15. Culture and value systems in which they live... QoL in the Michalak household: a
longitudinal analysis of cultural change
2009
2010
2007
2008
2011
16. What is quality of life?
“individuals’ perceptions of their position in life
in the context of the
culture and value systems in which they live
and in relation to
their goals, expectations, standards and concerns”
17. Qualitative study into QoL in BD
Study Aim –
To describe patient’s own experiences of how BD impacts QoL
Methods -
Purposeful sampling used to identify:
People with BD Type I/II (N = 35)
~ Median Age: 43 11 yrs
~ 64% female ~ 63% BD I
~ Range of illness states
Family members (N = 5)
Expert clinicians (N = 12)
Individual interviews,
thematic analysis.
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
18. Findings from qualitative research into QoL in BD
Social
Stigma Spirituality
Support
Independence Identity
19. What is quality of life?
Take home
messages
• Subjective
• Contextual
• Multidimensional
• Some dimensions of QoL may be of particular
importance to people living with BD
20. Part 2. What’s the rationale
for assessing QoL in clinical
practice?
Research Evidence
21. Rationale for assessing QoL in clinical practice
Research evidence
1. People attend to more than symptoms when
evaluating treatment outcomes
2. Treatments with the same impact on symptoms can
have different impacts on QoL
3. Mismatch between symptom and QoL change
common
4. ‘Because we can’
22. 1. People attend to more than symptoms when evaluating
treatment outcomes
Study:
• Psychiatric outpatients (N = 535) in treatment for MDD
• Surveyed about the most important factors in determining
remission
• Determinants of remission:
Absence of depression
Positive mental health
General well-being
Return to normal self
Others (N=12)
Source: Zimmerman, M. Am J Psychiatry. 2006;163(1):148-50.
23. 1. People attend to more than symptoms when evaluating
treatment outcomes
CREST.BD Study:
Aim
~ To explore self-management
strategies in people living well
with BD
Methods
~Purposeful sampling of
high- functioning individuals
w/ BDr
~Qualitative Focus Groups
People with BD Type I/II (N = 39)
~ Median Age: 43 13 yrs
~ 78% female ~ 78% BD I
~ Range of illness states
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
24. 1. People attend to more than symptoms when evaluating
treatment outcomes
Definitions of ‘WELLNESS’
Feeling Balanced
Maintaining Self-Confidence
Having Fun
Healthy Social Life
Meeting Goals
Maintaining Creativity
Michalak et al. Qual Life Res. 2006, 15:25-37; Michalak et al. Bipolar Disord. 2007, 9:126-43.
25. 2. Treatments with the same impact on symptoms can
have different impacts on QoL
Shi et al., (2002)
• Randomised BD type I (n = 453 ) patients with acute
mania to olanzapine or haloperidol
• Findings: Remission rates similar at 6 and 12
weeks, but…
– Olanzapine showed superior health functioning at
both time points
– Olanzapine showed greater impact on work
functioning at 12 weeks
26. 3. Mismatch between symptom and QoL change common
Percentage of Patients With First-Episode Psychotic Affective Disorders Who Reached
Syndromal (N=199) and Functional (N=181) Recovery Within 6 and 24 Months After First
Lifetime Hospitalization
Opportunity to
identify residual
problems that require
intervention ...
Source: Tohen et al. Am J Psychiatry. 2000;157(2):220-228
27. 4. ‘Because We Can’
Publications referencing QoL as a proportion of publications referencing BD
(Scopus database, terms in abstract, title or keywords), past 20 years
Exponential growth
(F (1,18) = 136.76,
p < .001, Adj R2 = .88)
But...
Sheer numbers still small
N for QoL
publications = 140
Vs.
N for symptom measure
publications = 1576
Source: Murray G, Michalak EE. Bipolar Disord. 2012;14(8):793-6.
29. Development of the QoL.BD
• Five year, mixed-method research program
• Aim - develop a self-report measure for use in:
1. Treatment and naturalistic studies
2. Routine clinical care
3. Self-management
30. Development of the QoL.BD
A priori criteria:
1. Valid across the spectrum of BD
diagnoses
2. Valid across mood states
3. Minimises cognitive demand, while
retaining strong psychometric properties
4. Sensitive to change
31. Development of the QoL.BD
• Two phases of scale development across
four sequential studies
Phase 1: Item Generation Phase
Phase 2: Item Reduction Phase
32. Phase 1: Item Generation
Qualitative
interviews (N=52) Initial item pool
(210 items)
Literature review
33. Phase 2: Item Reduction
Weighting exercise
Pilot questionnaire
(N = 25):
clarity, frequency and (139 items,
importance 13 domains)
Psychometric evaluation 91 items,
(N = 225, once, N = 93
7±2 days later) 14 domains
Final weighting exercise Full 56-item,
via CREST.BD (N = 40) 14 domain QoL.BD
35. QoL.BD Scale
PHYSICAL SPIRITUALITY
SLEEP FINANCES
MOOD HOUSEHOLD
12 Basic
Scales COGNITION SELF-ESTEEM
LEISURE INDEPENDENCE
SOCIAL IDENTITY
WORK
2 Optional Scales
(Included in Full QoL.BD STUDY
version only)
36.
37. Brief QoL.BD Version
12-item
12 Domain
QoL.BD Scale
Single item from
each of the 12
basic scales
38. Part 4. Using the QoL.BD in
clinical practice
- some common questions
39. Using the QoL.BD in clinical
practice, some common questions
1. How long does it take to complete?
2. Do I use the short or the full version?
3. In what mood phases should I apply it?
4. Is there anything else I should assess at the
same time?
5. What timeframe should I assess QoL over?
6. How do I detect meaningful change?
7. How do I go about incorporating the QoL.BD
in routine practice?
41. Additional Resources
QoL.BD www.crestbd.ca/dt_portfolio/quality-of-life/
Access to downloadable scales | Peer-reviewed papers | Videos | FAQs
NEW VIDEO SERIES:
QoL.BD TRAINING: QoL concepts, QoL.BD development and application
• What is Quality of Life?: http://youtu.be/7ZHKQi_FoRs
• Development of the QoL.BD: http://youtu.be/0_LrrT9W8gM
• What's the rationale for assessing QoL in clinical practice? http://youtu.be/rCexI7yhOZY
TRAINING VIDEOS: Applying the Quality of Life in Bipolar Disorder QoL.BD Assessment
Scale - clinical practice vignettes
• “Patient Vignette 1”: http://youtu.be/S85gqLDf30A
• “Patient Vignette 2”: http://youtu.be/KyVgxpAktbk
42. QoL.BD scale publications
• Michalak et al. Qual Life Res. 2006, 15:25-37
• Michalak & Murray. Bipolar Disord.
2010, 12(7):727-40.
• Murray & Michalak.
Bipolar Disord.
2012, 14(8):793-6
44. “QoL in people with BD: An e-health innovation project”
• One-year CIHR-funded Patient-Centred e-Health research
project
• Purpose:
– Further develop a web-based QoL.BD resource centre to support on-
line use via healthcare providers and people living with BD
• Outcomes:
– Development of on-line version (French and English) designed for
completion by people with BD
– Visual feedback
– Dovetailing into specific self-management resource recommendations
– Additional training videos and support tools