chapter 15 treatment outcomes across the disablement spectrum
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Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Chapter 15Treatment Outcomes Across the
Disablement Spectrum
Chapter 15Treatment Outcomes Across the
Disablement Spectrum
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Chapter OverviewChapter Overview
• Performing research on injured or ill patients is important to advancing the health sciences.
• The importance of selecting appropriate outcomes measures to assess in patients as their pathology progresses over time.
• Conceptual framework for the measurement of treatment outcomes.
• Delineate between disease-oriented and patient-oriented measures.
• Global and region-specific measures.
• How to choose the appropriate outcomes instruments.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Types of Outcomes MeasuresTypes of Outcomes Measures
Outcomes Measures in the Health Sciences
Disease-oriented evidence (DOE): measures that provide insight into the physiology of illness or injury
Provides information of most interest to health care providers, rather than patients
Examples: blood pressure, electromyographic activity
Patient-oriented evidence (POE): information that is subjectively self-reported by patients as opposed to gained from objective clinical or laboratory measures.
Consists of measures that are of direct interest to patients, rather than clinicians
Examples: severity of symptoms, level of function, and quality of life; also financial outcomes such as cost of health care services
POE is sometimes referred to as patient-oriented evidence that matters (POEM).
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Disablement ModelsDisablement Models• The measurement of treatment outcomes in clinical
research must be built upon disablement models.
• Disablement models put forth by organizations: – Institute of Medicine– World Health Organization– National Center for Medical Rehabilitation Research
• A common foundation for all of these models is the emphasis on the psychosocial functioning of the individual patient (POE) as opposed to the physiological functioning of the patient (DOE).
• Saad Nagi (1960’s): the concept of disability as a sociological construct.
• Disability: the inability or limitation in performing socially defined roles and tasks expected of an individual within a sociocultural and physical environment. This definition is in contrast to the common perception of disability as a permanent physical or mental handicap.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Examples of Four Patients Using Nagi’s Disablement ModelExamples of Four Patients Using Nagi’s Disablement Model
Patient Demographics
20-year-old female collegiate basketball player
35-year-old male roofer 35-year-old female lawyer 70-year-old male retiree who volunteers regularly at a homeless shelter
Active Pathology Knee ligament sprain Knee ligament sprain Irritable bowel syndrome Early stage of Parkinson disease
Impairments -Knee pain-Limited knee range of motion-Quadriceps weakness
-Knee pain-Limited knee range of motion-Quadriceps weakness
-Frequent abdominal pain and bloating-Chronic diarrhea-Headaches
-Minor tremors-Slowed movements-Diminished reflexes
Functional Limitations
Unable to: -squat-kneel-climb stairs-jog-jump
Unable to: -squat-kneel-climb stairs-jog-jump
Unable to:-concentrate for extended periods of time-sit for long periods of time
Unable to:-perform upper extremity tasks without considerable shaking-walk as fast as he would like-maintain his balance as well as he previously did
Disability Unable to:-play basketball-go to classes without using crutches
Unable to:-work as a roofer-play on the floor with his young children-maintain his home garden
Unable to:-work as productively as she would like as a lawyer-participate in social activities as she would like (e.g., no movies, no dinners out)
Unable to:-Serve meals at the homeless shelter-maintain his home and yard as he would like
Quality of Life -Increased anxiety because of loss of identity as an athlete-Loss of social support from team members
-Increased anxiety because of inability to work and provide financially for his family-Depression because of inability to interact with his children as he would like to
-Increased anxiety because of inability to work as much as she would like-Extreme concern that she may not make partner at her law firm-Loss of social role in her circle of friends
-Increased anxiety about having to move out of his home because of his physical health -Loss of social support from fellow volunteers at the homeless shelter
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Nagi’s ModelNagi’s Model• Active pathology: refers to the patient’s injury or illness.
• Impairment: refers to abnormality in physiological function at the site of injury. Considered DOE.
• Functional limitation: refers to limitations in actions due to the associated impairments. Represents DOE or POE depending on the context.
• Disability: operationally defined as an inability to perform normal socially expected activities due to functional limitations. Considered POE.
• Quality of life: an individual’s vitality and level of satisfaction with his or her current state of existence. Can be influenced by impairments, functional limitations, and disability. Considered POE.
• In the context of health care outcomes, this concept is referred to as health-related quality of life (HRQOL) to distinguish it from socioeconomic or interpersonal issues that may also influence an individual’s overall quality of life.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
The National Center for Medical Rehabilitation ResearchThe National Center for Medical Rehabilitation Research
• The National Center for Medical Rehabilitation Research (NCMRR) is a division of the United States National Institutes of Health. NCMRR’s disablement model is similar to Nagi’s model, but it replaces “quality of life” with “societal limitations.”
• Societal limitations: refer to restrictions resulting from social policy or barriers, which limit fulfillment of roles or deny access to services and opportunities associated with full participation in society.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
World Health Organization (WHO)World Health Organization (WHO)
The WHO disasblement model uses a standardized documentation system that allows clinicians and health systems to classify and quantify specific descriptors of a patient’s disability.
International Classification of Functioning, Disability and Health (ICF) model. (Reprinted with permission from World Health Organization (WHO).)
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
World Health Organization (WHO) ModelWorld Health Organization (WHO) Model• Patient’s health condition (at top of model): represents the patient’s
pathology in the form of a disorder, disease, or injury.
• Body functions and structures: the cause of the health condition described in terms of abnormalities.
• Activities (at the center of the model): operationally defined similarly to functional limitations in the Nagi and NCMRR models.
• Participation: involves the performance of activities in societal contexts.
• Contextual factors: (remaining portions of the model):
– Personal factors: patient’s age, sex, socioeconomic status, and previous life experiences.
– Environmental factors: physical, social, and attitudinal environments of patients; also include support and relationships, attitudes, and services and policies. These can be considered at the level of the individual or society.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Clinician Derived Measures and Patient Self-ReportClinician Derived Measures and Patient Self-ReportClinician Derived Measures
• Most health care providers routinely take measures on their patients that could be considered clinical outcomes.
– Example: core body temperature or body mass index. These measures represent DOE.
• When asked to subjectively assess their patient’s outcome or level of disability, clinicians typically rate their patient’s success substantially higher than the patients do themselves.
Patient Self-Report
• The most common type of POE comes from outcomes patients subjectively self-report on their current health status.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Global Health Measures Global Health Measures
• Survey instruments used to assess global health status typically focus on quality of life and disability.
– Multidimensional scales with questions that address physical health and emotional well-being.
Examples of common global health outcomes instruments:
• Short Form 36 Health Survey (SF 36)
• Short Form 12 Health Survey (SF 12)
• Sickness Impact Profile (SIP)
• Child Health Questionnaire (CHQ)
• Pediatric Outcomes Data Collection Instrument (PODCI)
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Condition-, Region-, or Dimension-Specific Measures Condition-, Region-, or Dimension-Specific Measures
• A large number of outcomes instruments exist to assess patients with either distinct pathologies or groups of pathologies.
– These instruments are designed to address functional limitations and disabilities that are often associated with patients who have the specific injury or illness.
• Dimension-specific outcomes instruments are often designed to assess a specific physical or emotional phenomenon such as pain, anxiety, or depression.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Single Item Outcomes MeasuresSingle Item Outcomes Measures
• Having outcomes instruments with a limited number of questions is advantageous to patients, clinicians, and researchers because it eliminates redundancy in items.
• When dealing with global health, these measures essentially ask patients to answer one question: “How are you?”
• Often referred to as Single Assessment Numeric Evaluation (SANE) scores.
• Other single item tools might ask patients to judge only their level of pain or ask them if they have improved or gotten worse since their last assessment.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Choosing the Appropriate Outcomes InstrumentChoosing the Appropriate Outcomes Instrument
• Two issues are critical when clinicians and researchers select outcomes instruments to employ in clinical practice or experimental studies:
1. Matching the purpose of measurement with the instrument’s design.
2. Ensuring that the instrument’s clinimetric properties have been rigorously established.
• Be careful not to overgeneralize the utility of an outcomes instrument to populations that it was not designed to measure.
• Clinimetric properties such as reliability, validity, sensitivity to change, and internal consistency must all be assessed during the development of an outcomes instrument.
Copyright © 2011 Wolters Kluwer Health | Lippincott Williams & Wilkins
Chapter Summary and Key PointsChapter Summary and Key Points
• Disease-oriented evidence (DOE) is critical to understanding the pathophysiology of specific conditions.
• Patient-oriented evidence (POE) outcomes measures provide critical information regarding the impact that a person’s health care status has on his or her ability to function in society and his or her quality of life.
• Each disablement model provides a framework using standard terminology for the description of health status.
• Clinician-subjective reports of patient outcomes should be considered DOE rather than POE.
• Eliminating redundancy in items is an important step in developing an outcomes instrument.
• Care must be taken not to overgeneralize the utility of an outcomes instrument to populations that it was not designed to measure.
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