Donald L. Patrick | |
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Nationality | American |
Occupation(s) | Social scientist, academic, and author |
Academic background | |
Education | AB, MSPH, and PhD |
Alma mater | |
Academic work | |
Institutions |
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Donald L. Patrick is a social scientist,academic,and an author. He is a Professor Emeritus of Health Systems and Population Health at the University of Washington,Director of Seattle Quality of Life Group,and Creator of the Biobehavioral Cancer Prevention and Control Training Program jointly with the Fred Hutchinson Cancer Center. [1] He has served as the co-chair of the Cochrane Collaboration's Patient Reported Outcomes Methods Group. His research interests revolve around various aspects of public health which integrate the themes from fields such as psychological intervention,social stratification,public health,and quality of life. Much of his research works have focused on outcomes research on vulnerable populations,health disparities,and end-of-life-care. [2]
Patrick has published five books including,Long-term Effects of War-Related Deprivation on Health:A Report on the Evidence,Health Status and Health Policy:Quality of Life in Health Care Evaluation and Resource Allocation,and Hope or Hype:The Obsession with Medical Advances and the High Cost of False Promises. [3]
Patrick is a Member of the US National Academy of Medicine,and was the First President of International Society for Quality of Life Research. [4] He was the Associate Editor of Quality of Life Research . [5]
Patrick graduated from the Northwestern University with a major in Psychology in 1966. Subsequently,he attended Columbia University,completed his MSPH degree in 1968,and graduated with a Ph.D. degree in Public Health in 1972. [6]
Patrick started his academic career as a Research Sociologist at the New York University (NYU) and later joined the University of California,and helped to develop the Quality of well-being index,and general health policy model. Subsequently,he held an appointment as a lecturer of Public Health,and Instructor for Sociology of Medical Care in the Department of Epidemiology and Public Health and Institution for Social and Policy Studies at Yale University. He then moved to the United Kingdom where he was at St Thomas's Hospital Medical School,and served as senior lecturer at University of London between 1976 and 1982. Afterwards,he joined the Department of Social Medicine at the University of North Carolina as an associate professor from between 1982 until 1987. [1] He has held appointments as Professor at the School of Public Health,School of Medicine,and the Department of Sociology at the University of Washington. As of 2000,he has been an adjunct professor in the Department of Rehabilitation Medicine and School of Pharmacy,and is now the Emeritus Professor of Department of Health Systems and Population Health School of Public Health at the University of Washington. [7] He was also the Full Member of Fred Hutchinson Cancer Research Center from 1988 until 2019.
Patrick has held several administrative appointments throughout his career. He was the first Director of Program in Social and Behavioral Sciences in the School of Public Health at the University of Washington and held this appointment from 1987 until 2006. He headed the Social Science Section at the University of London from 1977 until 1982,and has directed the Bio behavioral Cancer Prevention and Control Training Program,and Seattle Quality of Life Group at the University of Washington. [8]
Patrick held an appointment as Medical Assistant at the McKenzie-Willamette Medical Center,and Sacred Heart Medical Center in Oregon between 1962,and 1966. After that,at Columbia University,he undertook internship at Montefiore Hospital and Medical Center in New York,and served as an Administrative Intern. Later on,he also held an appointment as a Senior Health Planner at the New York State Executive Department at the Health Planning Commission in New York. He was the Associate Chair for Research in the Department of Health Systems and Population Health between 2016,and 2019 at University of Washington. [2]
Patrick has published more than 500 papers. His research spans the fields of public health,chronic illness,public health policy,outcomes research,quality of life,health status assessment with a particular emphasis on vulnerable populations,health promotion,and health disparities. [9] One of his earliest papers entitled,"Toward an operational definition of health" is widely cited. [10]
Patrick's research on health status assessment has had significant implications in the fields of public health,health policy,and quality of life. He is best known for his contribution to the development of Quality of well-being index,World Health Organization Quality of Life assessment (the WHOQOL) settings,and numerous disease specific quality of life measures. He conducted a 10-year program of research in Lambeth in London on the care of persons with physical disabilities culminating in a series of papers and a book. While exploring the varied aspects of quality of life (QOL) and health status assessment,he partook in a WHO project focused on the development of QOL measuring instrument with evident reliability,validity,and pertinence to diverse cultural settings. The particular features of the planned instrument (WHOQOL),and the study protocol was reported in 1993. [11] Later on,in a 1998 research paper by WHOQOL Group,the successfully developed final-trial version of instrument entitled,"WHOQOL-100". The research findings also suggested that the said instrument presented psychometric properties applicable to multi-cultural settings. [12] He has also focused his research on assessing the health status among older adults,and revealed that Rapid Assessment of Physical Activity (RAPA) serves as an appropriate,and valid measure of physical activity,and thus,the RAPA self-report questionnaires can be used in clinical settings. [13] While investigating the community functioning of individuals suffering from Schizophrenia,his research highlighted that although behavioral assessment and clinician ratings can be efficient for the clinical trials,there is still a need for the development of adequate valid and reliable instruments. In addition to that,he addressed that an objective standard of community functioning also created a hurdle in the formulation of instruments for the assessing community functioning. [14] Since,health-related quality of life (HRQL) measurement is considered vital for guiding patient care and policy choices,as recognized by clinicians and decision-makers alike. It has also been explained that for the (HRQL) measures to be easily comprehended by the clinicians,and policymakers alike so as they can analyze score differences,and achieve meaningful outputs. He specified two primary approaches regarding the measurement of QOL which includes,generic and specific instruments that differ in their potential to either indicate general HRQL or target specific disease and patient group respectively. [15] It has also been demonstrated with his research works how the assessment of QOL regarding health in the clinical practice can lead to myriad benefits including,disease prevention,reduction in pain or discomfort symptoms,avoidance of complications,with a goal to promote a prolonged life. [16]
Patrick was a Special Government Employee for 10 years working on and culminating in the publication on the Food and Drug Administration Guidance on the Use of Patient Reported Outcomes in Medical Product Evaluation and labeling. [17] [18]
Patrick has focused his research on evaluating the quality of death,and exploring the measure of the quality of the dying. In one of his research studies conducted in 2002,he designed and supervised after-death interviews with the family members of the deceased since the research findings can be utilized for the improvement of near-death care,and experience of the dying patients. [19] With the qualitative data from individuals with and without chronic as well as terminal diseases,he also performed evaluation of quality of dying and death. [20] Furthermore,he has also looked into the barriers associated with the communication of end-of-life-care with the acquired immune deficiency syndromes (AIDS) patients,and how the interventions concentrated on the communication could be facilitated. [21] His research has also laid a particular emphasis on increasing awareness of not even identifying but also explaining the cancer-related distress. A conference reported that the before employing the treatment interventions,assessment must be carried out focused on the symptom,pain,depression,and fatigue management in cancer patients. According to the research findings,clinicians should rely on brief assessment tools to examine and continuously discuss the symptom management with the patients. In addition to that,the key factors which may influence the cancer-related distress,and symptom management including limited knowledge,and effectiveness of the treatment interventions have been addressed by his research as well. [22]
Patrick's research concentrated on the chronic illnesses has explored the dynamics of health services use on the chronic health conditions. The inattention to the non-fatal diseases in the health care services have been identified,specifically in young adults and primarily corresponds to their prevalence. [23] Based on a self-report questionnaire results by adults with chronic conditions,improved functional status with the presence of fewer depressive symptoms,leads to better quality of life. However,it was emphasized that this strong association between functional status and quality of life exhibits difference exists across different populations. [24]
Patrick is most known for his work on outcomes research which covers a broad range of aspects,particularly focused on vulnerable populations,chronic illness,as well as end of life care. In a Delphi study featuring a collaboration with public health experts,a consensus was reached between experts over the taxonomy,and terminology of the measures aimed at patient-reported outcomes (PRO) based on health. [25] Having focused on the PRO,he also determined the content validity on the PRO instruments aimed for the use in medical product evaluation. [26] Moreover,the evaluation of clinically significant differences for QOL outcomes has been characterized by him as well. [27] The research findings of in-depth analysis of quality adjusted life years (QALYs) illustrated that patients with clinically significant depressive symptoms reflect significantly lower QALY,when compared to non-depressed individuals. [28] The need to improve care for depressed adult patients aged more than 65 has been demonstrated in his research as well. [29] Whereas,in a LIDO Study focused on the depression outcomes in patients from a culturally diverse primary health care setting,it was revealed that higher depressive symptoms scores were found to be linked with poor health,poor quality of life,and an increased use of health care services,with no particular association to the demographic variables. The probability of relying on depression treatment intervention was marked by distinct health perceptions,as well as the severity of depression. [30]
Ray Moynihan reviewed Richard Deyo and Patrick's book Hope or Hype:The Obsession with Medical Advances and the High Cost of False Promises and wrote that it is,"Packed full of powerful examples,and destined to serve as a reference book for future generations of students…",but called the appraisal of commercially driven medicine unnecessary,and said that that focus needs to shifted upon the how to solve the dilemma of excess of profitable medicines rather than just its diagnosis. [31] Simon Chapman was of the view that the book would not be well received by many of the conference delegates,and they could consider it,"a catalog of profanity." Chapman commended the book stating that,"This is a scholarly,thoroughly referenced,and entirely accessible book that deserves to be read...",and regarded the lack of inclusion of the international perspective on how various governments have tried to change the poor use of medical resource,a key shortcoming of the book. However,considering the book a classic exposition,he added that,"Except for this parochialism,it…deserves a wide readership." [32]
Kaplan in the book review of Health Status and Health Policy:Quality of Life in Health Care Evaluation and Resource Allocation authored by Patrick,and Pennifer Erickson reported that the book "highlights the issues associated with applying utility-based measures,and explains the steps involved in conducting cost-utility analysis." [33]
Patrick has two children with his wife,Shirley A. A. Beresford,who is also a Professor Emeritus at the University of Washington. [36]
In medicine, comorbidity refers to the simultaneous presence of two or more medical conditions in a patient; often co-occurring with a primary condition. It originates from the Latin term morbus prefixed with co- ("together") and suffixed with -ity. Comorbidity includes all additional ailments a patient may experience alongside their primary diagnosis, which can be either physiological or psychological in nature. In the context of mental health, comorbidity frequently refers to the concurrent existence of mental disorders, for example, the co-occurrence of depressive and anxiety disorders. The concept of multimorbidity is related to comorbidity but is different in its definition and approach, focusing on the presence of multiple diseases or conditions in a patient without the need to specify one as primary.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimising quality of life and mitigating or reducing suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist.
The quality-adjusted life year (QALY) is a generic measure of disease burden, including both the quality and the quantity of life lived. It is used in economic evaluation to assess the value of medical interventions. One QALY equates to one year in perfect health. QALY scores range from 1 to 0 (dead). QALYs can be used to inform health insurance coverage determinations, treatment decisions, to evaluate programs, and to set priorities for future programs.
A pain scale measures a patient's pain intensity or other features. Pain scales are a common communication tool in medical contexts, and are used in a variety of medical settings. Pain scales are a necessity to assist with better assessment of pain and patient screening. Pain measurements help determine the severity, type, and duration of the pain, and are used to make an accurate diagnosis, determine a treatment plan, and evaluate the effectiveness of treatment. Pain scales are based on trust, cartoons (behavioral), or imaginary data, and are available for neonates, infants, children, adolescents, adults, seniors, and persons whose communication is impaired. Pain assessments are often regarded as "the 5th vital sign".
A patient-reported outcome (PRO) is a health outcome directly reported by the patient who experienced it. It stands in contrast to an outcome reported by someone else, such as a physician-reported outcome, a nurse-reported outcome, and so on. PRO methods, such as questionnaires, are used in clinical trials or other clinical settings, to help better understand a treatment's efficacy or effectiveness. The use of digitized PROs, or electronic patient-reported outcomes (ePROs), is on the rise in today's health research setting.
Frailty or frailty syndrome refers to a state of health in which older adults gradually lose their bodies' in-built reserves and functioning. This makes them more vulnerable, less able to recover and even apparently minor events can have drastic impacts on their physical and mental health.
Outcomes research is a branch of public health research which studies the end results of the structure and processes of the health care system on the health and well-being of patients and populations. According to one medical outcomes and guidelines source book - 1996, Outcomes research includes health services research that focuses on identifying variations in medical procedures and associated health outcomes. Though listed as a synonym for the National Library of Medicine MeSH term "Outcome Assessment ", outcomes research may refer to both health services research and healthcare outcomes assessment, which aims at health technology assessment, decision making, and policy analysis through systematic evaluation of quality of care, access, and effectiveness.
In general, quality of life is the perceived quality of an individual's daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social and physical aspects of the individual's life. In health care, health-related quality of life (HRQoL) is an assessment of how the individual's well-being may be affected over time by a disease, disability or disorder.
An electronic patient-reported outcome (ePRO) is a patient-reported outcome that is collected by electronic methods. ePRO methods are most commonly used in clinical trials, but they are also used elsewhere in health care. As a function of the regulatory process, a majority of ePRO questionnaires undergo the linguistic validation process. When the data is captured for a clinical trial, the data is considered a form of Electronic Source Data.
The Patient Health Questionnaire (PHQ) is a multiple-choice self-report inventory that is used as a screening and diagnostic tool for mental health disorders of depression, anxiety, alcohol, eating, and somatoform disorders. It is the self-report version of the Primary Care Evaluation of Mental Disorders (PRIME-MD), a diagnostic tool developed in the mid-1990s by Pfizer Inc. The length of the original assessment limited its feasibility; consequently, a shorter version, consisting of 11 multi-part questions - the Patient Health Questionnaire was developed and validated.
The Donabedian model is a conceptual model that provides a framework for examining health services and evaluating quality of health care. According to the model, information about quality of care can be drawn from three categories: "structure", "process", and "outcomes". Structure describes the context in which care is delivered, including hospital buildings, staff, financing, and equipment. Process denotes the transactions between patients and providers throughout the delivery of healthcare. Finally, outcomes refer to the effects of healthcare on the health status of patients and populations. Avedis Donabedian, a physician and health services researcher at the University of Michigan, developed the original model in 1966. While there are other quality of care frameworks, including the World Health Organization (WHO)-Recommended Quality of Care Framework and the Bamako Initiative, the Donabedian model continues to be the dominant paradigm for assessing the quality of health care.
The Patient-Reported Outcomes Measurement Information System (PROMIS) provides clinicians and researchers access to reliable, valid, and flexible measures of health status that assess physical, mental, and social well–being from the patient perspective. PROMIS measures are standardized, allowing for assessment of many patient-reported outcome domains—including pain, fatigue, emotional distress, physical functioning and social role participation—based on common metrics that allow for comparisons across domains, across chronic diseases, and with the general population. Further, PROMIS tools allow for computer adaptive testing, efficiently achieving precise measurement of health status domains with few items. There are PROMIS measures for both adults and children. PROMIS was established in 2004 with funding from the National Institutes of Health (NIH) as one of the initiatives of the NIH Roadmap for Medical Research.
Health care quality is a level of value provided by any health care resource, as determined by some measurement. As with quality in other fields, it is an assessment of whether something is good enough and whether it is suitable for its purpose. The goal of health care is to provide medical resources of high quality to all who need them; that is, to ensure good quality of life, cure illnesses when possible, to extend life expectancy, and so on. Researchers use a variety of quality measures to attempt to determine health care quality, including counts of a therapy's reduction or lessening of diseases identified by medical diagnosis, a decrease in the number of risk factors which people have following preventive care, or a survey of health indicators in a population who are accessing certain kinds of care.
The Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) is a disease specific patient-reported outcome measure which measures the effect growth hormone deficiency has on adult patients. The score of the QoL-AGHDA is used to determine the extent to which growth hormone deficiency has affected the patient’s quality of life, and what treatment can then be administered. A high score on the QoL-AGHDA indicates that the patient suffers from many symptoms and therefore has a lower quality of life.
EQ-5D is a standardised measure of health-related quality of life developed by the EuroQol Group to provide a simple, generic questionnaire for use in clinical and economic appraisal and population health surveys. EQ-5D assesses health status in terms of five dimensions of health and is considered a ‘generic’ questionnaire because these dimensions are not specific to any one patient group or health condition. EQ-5D can also be referred to as a patient-reported outcome (PRO) measure, because patients can complete the questionnaire themselves to provide information about their current health status and how this changes over time. ‘EQ-5D’ is not an abbreviation and is the correct term to use when referring to the instrument in general.
Functional Assessment of Cancer Therapy - General (FACT-G) is a patient-reported outcome measure used to assess health-related quality of life in patients undergoing cancer therapy. The FACT-G is the original questionnaire that led to the development of the larger Functional Assessment of Chronic Illness Therapy (FACIT) collection of quality of life instruments. The survey assesses the impacts of cancer therapy in four domains: physical, social/family, emotional, and functional. The FACT-G is also offered with additional questions measuring cancer-specific factors that may affect quality of life, leading to the creation of the Functional Assessment of Cancer Therapy - Head and Neck (FACT-H&N), the Functional Assessment of Cancer Therapy - Lung (FACT-L), and 18 others.
Robert D. Kerns is an American clinical psychologist, academic and author. He is Professor Emeritus of Psychiatry, Neurology and Psychology at Yale University and Senior Research Scientist of Psychiatry at the Yale School of Medicine. He is also a Program Director of National Institutes of Health, Department of Defense and Department of Veterans Affairs Pain Management Collaboratory Coordinating Center.
Cancer-related symptom burden refers to the cumulative impact of physical, psychological, and emotional symptoms—such as pain, fatigue, nausea, and emotional distress —experienced by individuals with cancer due to the disease and its treatment. This burden encompasses both the severity of these symptoms and the patient's perception of their impact on daily life and overall well-being.
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