A framework for best practices in clinical outcome assessment (COA) concept mapping: a case study.

PURPOSE: Mapping or matching the items in a clinical outcome assessment (COA) to concepts that define a condition is a common method for evaluating a COA's concept coverage. The purpose of this research was to address the lack of formal guidance for conducting this task by developing a framework for best practices in COA concept mapping and applying it to a case study. METHODS: To develop the framework, we examined the literature and created a draft set of best practices which was then reviewed by experienced researchers through focus groups before being finalized. To conduct the case study, we extracted data from a systematic review of knee osteoarthritis (KO) symptoms and impacts and used the framework to map relevant concepts to items in the SF-36v2® Health Survey (SF-36v2). RESULTS: The framework guides researchers in defining the purpose of and data sources for the mapping, establishing guiding principles and decision-making thresholds, and conducting the mapping exercise. The results of the case study demonstrate the usefulness of the framework in identifying 27/36 items (75%) in the SF-36v2 that addressed concepts that define KO. CONCLUSION: This case study illustrates how the framework for best practices in COA concept mapping may be used, highlighting how establishing clear concept definitions and guiding principles and following a structured process throughout can help produce consistent, reliable, and reproducible results. The results from this rigorous approach can provide valuable evidence to support decisions about the appropriateness of a COA for the intended patient population.

In health-related quality of life research, mapping items in a clinical outcome assessment (COA) to concepts that define a health condition is one way to evaluate an instrument's content validity (or, how well the instrument addresses the concepts it intends to measure). Without formal guidance on how to do this mapping, researchers can be inconsistent. This article describes the development of a framework for best practices in COA concept mapping. Informed by the literature and input from researchers with expertise in COA development and evaluation, the final framework guides researchers through the mapping process from start to finish, from helping to define the purpose of the task and identify the data sources, to establishing guiding principles and decision-making thresholds, conducting the mapping, and displaying the results. A case study­in which items from the SF-36v2^® Health Survey were mapped to concepts from a systematic review of knee osteoarthritis symptoms and impacts­shows the framework in action, demonstrating how following the best practices can lead to consistent results that can support the evaluation of an instrument's content validity.

Deciding Between SF-6Dv2 Health States: A Think-Aloud Study of Decision-Making Strategies Used in Discrete Choice Experiments.

OBJECTIVE: This study aimed to gain insight into decision-making strategies individuals used when evaluating pairs of SF-6Dv2 health states in discrete choice experiments (DCEs). METHODS: This qualitative, cross-sectional, noninterventional study asked participants to use a think-aloud approach to compare SF-6Dv2 health states in DCEs. Thematic analysis focused on comprehension and cognitive strategies used to compare health states and make decisions. RESULTS: Participants (N = 40) used 3 main strategies when completing DCEs: (1) trading, (2) reinterpretation, and (3) relying on previous experience. Trading was the most common strategy, used by everyone at least once, and involved prioritizing key attributes, such as preferring a health state with significant depression but no bodily pain. Reinterpretation was used by 17 participants and involved reconstructing health states by changing underlying assumptions (eg, rationalizing selecting a health state with significant pain because they could take pain medications). Finally, some (n = 13) relied on previous experience when making decisions on some choice tasks. Participants with experience dealing with pain, for instance, prioritized health states with the least impact in this dimension. CONCLUSIONS: Qualitatively evaluating the decision-making strategies used in DCEs allows researchers to evaluate whether the tasks and attributes are interpreted accurately. The findings from this study add to the understanding of the generation of SF-6Dv2 health utility weights and the validity of these weights (e.g., reinterpreting health states could undermine the validity of DCEs and utility weights), and the overall usefulness of the SF-6Dv2. The methodology described in this study can and should be carried forth in valuing other health utility measures, not just the SF-6Dv2.

Understanding the Symptom Burden and Impact of Myasthenia Gravis from the Patient's Perspective: A Qualitative Study.

INTRODUCTION: Patients with generalized myasthenia gravis (gMG) experience functional impairment due to MG symptoms. This study aimed to assess, from the patient perspective, the symptoms, impacts, and treatment goals of individuals diagnosed with gMG. METHODS: Semi-structured, in-depth concept-elicitation interviews were conducted with 28 individuals diagnosed with gMG in the United States. RESULTS: Participants reported gMG symptoms that affected many body regions and functions, with an average of 16 symptoms per participant. The most frequently reported symptoms were eyelid drooping (93%), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing (82%), and difficulty holding head up (82%). Nearly all participants (96%) reported fluctuations in symptoms and severity. Participants' most bothersome symptoms were blurry/double vision (43%), breathing difficulties (36%), all-over fatigue (36%), and swallowing problems (29%). Impacts on physical functioning included an inability to participate in hobbies/sports, need for increased planning, and difficulties performing activities of daily living. All participants reported emotional impacts and impacts on their work and finances. Their treatment goals included reduced fatigue and weakness, improved symptom stability, and minimization of the impact of symptoms, in particular the emotional impact. CONCLUSIONS: The fluctuating and unpredictable nature of gMG symptoms was found to have a substantial impact on patients' emotional, social, and economic well-being. Participants' goals for symptom management suggest that greater focus is needed to help them quickly resume a normal lifestyle by achieving symptom stability. Impacts of fluctuating and unpredictable symptoms are difficult to measure, but it is important to consider symptom fluctuation as well as ongoing symptomatology when making treatment decisions, and to recognize the impact of uncontrolled symptoms on patients, their partners/caregivers, and family/friends. These factors are often not reflected in burden/cost-of-illness studies.

The aim of this study was to understand­from the patient's point of view­the range of generalized myasthenia gravis (gMG) symptoms that they experience, which symptoms bother them most, and which symptoms have the greatest impact on everyday life, as well as patients' treatment goals. Researchers asked these questions in one-on-one interviews with 28 people in the US who have gMG. Study participants reported living with symptoms that come and go, and are sometimes severe, making it difficult to lead a normal life. The most frequently reported symptoms were eyelid drooping (reported by 93% of study participants), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing (82%), and difficulty holding head up (82%). The symptoms that bothered patients most were difficulties with vision (43%), problems breathing (36%), all-over fatigue (36%), and trouble swallowing (29%). Participants reported that gMG symptoms affected physical functioning, making it hard to participate in hobbies/sports, increasing the amount of planning needed to conduct their daily lives, and hindering their ability to do day-to-day activities (like driving, eating, and bathing). All participants reported that they were affected emotionally, and that the symptoms of gMG impacted their ability to work and their financial well-being. Participants' treatment goals included reducing fatigue and weakness, making symptoms more stable, and reducing the impact of symptoms, particularly emotional impacts. These responses reveal the extensive effects of gMG symptoms on patients' daily lives and highlight that symptom stability is especially important to people with gMG.

Development of a Conceptual Model to Understand Disease Burden in Patients With Systemic Lupus Erythematosus and Organ Damage.

Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can lead to irreversible organ damage (OD). Data describing the patient burden of OD, as compared with SLE without OD, are limited. Objective: To develop a comprehensive conceptual model describing the burden experienced by patients living with SLE-associated OD. Methods: There were three phases to this qualitative study. First, a targeted literature review was conducted to inform a draft conceptual model. Second, key opinion leaders (KOLs) were interviewed to assess the draft conceptual model and help shape patient interview materials. Third, patients of different demographic backgrounds from across the United States were interviewed individually to gather their perspectives on living with SLE-associated OD. Data from concept elicitation interviews with KOLs and patients were coded and analyzed using NVivo software to identify the key concepts of the overall patient burden of SLE-associated OD. Findings from the KOL and patient interviews were used to finalize the conceptual model. Results: KOLs highlighted that SLE-associated OD carried a higher rate of mortality than SLE alone. Participants with SLE-associated OD (n = 40) experienced detrimental impacts across 4 areas of their lives: physical, cognitive, psychosocial functioning, and economic and work-related well-being. Physical impacts were described by all participants, often affecting their ability to perform everyday tasks. Many also described deterioration of cognitive functioning. Almost all participants experienced emotional impacts and challenges to their relationships and social lives resulting from living with SLE-associated OD. Additionally, SLE-associated OD imposed an economic burden including increased healthcare costs. SLE-associated OD had a more severe and debilitating impact on all aspects of the patient's quality of life than SLE prior to OD development, including further limitations in activities of daily living after the development of OD. Discussion: Study findings guided the development of a comprehensive conceptual model that fully represents the patient experience of living with SLE-associated OD, highlighting the additional burden of OD when compared with SLE alone. Conclusions: The conceptual model will inform improvements in disease management, which may result in better patient outcomes and aid development of clinical outcome assessments of disease burden.

The Transthyretin Amyloidosis - Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure.

Purpose: Patients with transthyretin amyloidosis (ATTR) experience a wide variety of symptoms and impacts on health-related quality of life (HRQoL). However, the lack of an ATTR-specific patient-reported outcome (PRO) measure has made consistent measurement of HRQoL in ATTR challenging. This paper describes the development of a conceptual model and subsequent content for the Transthyretin Amyloidosis - Quality of Life Questionnaire (ATTR-QOL), an ATTR-specific PRO measure. Methods: This was a cross-sectional, non-interventional, US-based study. The study design included three stages: 1) a targeted literature review followed by qualitative data collection with patients and experts; 2) development of a conceptual model and PRO measure; and 3) review of the PRO measure using a modified Delphi method, translatability assessment, and interviews with patients and experts. Revisions were made to the measure after each round of review. Results: Forty-four patients and 29 experts participated in this study. The conceptual model included two primary concepts of interest: symptoms (cardiac, neuropathic-peripheral, neuropathic-autonomic, and other) and impacts (eg, physical, role, and mental/emotional functioning). Seventy-two items were created (32 symptoms; 40 impacts) to align with the model. A recall period of one month was selected based on participant input. Conclusion: The ATTR-QOL was created with significant patient involvement and guidance from a multidisciplinary group of experts. The mix of patient and clinical perspectives helped to ensure a balanced representation of all relevant disease experiences and clinical specialties. With further refinement from psychometric testing, the ATTR-QOL will provide a standard, comprehensive measure for all ATTR-specific research including both clinical trials and clinical practice.

Development of the SF-6Dv2 health utility survey: comprehensibility and patient preference.

BACKGROUND: The SF-6Dv2 classification system assesses health states in six domains-physical functioning, role function, bodily pain, vitality, social functioning, and mental health. Scores have previously been derived from the SF-36v2® Health Survey. We aimed to develop a six-item stand-alone SF-6Dv2 Health Utility Survey (SF-6Dv2 HUS) and evaluate its comprehensibility. METHODS: Two forms of a stand-alone SF-6Dv2 HUS were developed for evaluation. Form A had 6 questions with 5-6 response choices, while Form B used 6 headings and 5-6 statements describing the health levels within each domain. The two forms were evaluated by 40 participants, recruited from the general population. Participants were randomized to debrief one form of the stand-alone SF-6Dv2 HUS during a 75-min interview, using think-aloud techniques followed by an interviewer-led detailed review. Participants then reviewed the other form of SF-6Dv2 and determined which they preferred. Any issues or confusion with items was recorded, as was as overall preference. Data were analyzed using Microsoft Excel and NVivo Software (v12). RESULTS: Participants were able to easily complete both forms. Participant feedback supported the comprehensibility of the SF-6Dv2 HUS. When comparing forms, 25/40 participants preferred Form A, finding it clearer and easier to answer when presented in question/response format. The numbered questions and underlining of key words in Form A fostered quick and easy comprehension and completion of the survey. However, despite an overall preference for Form A, almost half of participants (n = 19) preferred the physical functioning item in Form B, with more descriptive response choices. CONCLUSION: The results support using Form A, with modifications to the physical functioning item, as the stand-alone SF-6Dv2 HUS. The stand-alone SF-6Dv2 HUS is brief, easy to administer, and comprehensible to the general population.

Content Validation of the ATTR Amyloidosis Patient Symptom Survey: Findings from Patient and Clinician Cognitive Debriefing Interviews.

PURPOSE: Amyloid transthyretin (ATTR) amyloidosis is a rare, progressive, and fatal disease. The ATTR Patient Symptom Survey (ATTR-PSS) was previously developed through literature review and concept elicitation input from clinicians and patients and revised after evaluation by a patient focus group. This study further evaluated the content validity of the ATTR-PSS through qualitative cognitive debriefing interviews with clinicians and patients. METHODS: Seven clinicians and 10 patients with ATTR amyloidosis were interviewed individually regarding their overall impressions, the clarity and appropriateness of the survey, relevance of concepts measured, and comprehensiveness and comprehensibility of items and response choice sets. RESULTS: Clinicians acknowledged the usefulness of the ATTR-PSS in research and clinical settings. They suggested minor modifications to the survey instructions, the addition of 3 symptoms, and the transfer of 10 conditions from the symptom list to 2 separate items. Patients found the ATTR-PSS to be easy to complete and relevant to their experiences. Their feedback resulted in modification to instruction text, edits to the description of 4 symptoms, removal of 1 symptom, and addition of 2 diagnoses. CONCLUSION: The findings support the content validity of the ATTR-PSS as an appropriate measure of symptom frequency, severity, and impact in patients with wild-type and hereditary ATTR amyloidosis.

Pain Self-Management for Veterans: Development and Pilot Test of a Stage-Based Mobile-Optimized Intervention.

BACKGROUND: Chronic pain is a significant public health burden affecting more Americans than cardiovascular disease, diabetes, and cancer combined. Veterans are disproportionately affected by chronic pain. Among previously deployed soldiers and veterans, the prevalence of chronic pain is estimated between 44% and 60%. OBJECTIVE: The objective of this research was to develop and pilot-test Health eRide: Your Journey to Managing Pain, a mobile pain self-management program for chronic musculoskeletal pain for veterans. Based on the transtheoretical model of behavior change, the intervention is tailored to veterans' stage of change for adopting healthy strategies for pain self-management and their preferred strategies. It also addresses stress management and healthy sleep, two components of promising integrated treatments for veterans with pain and co-occurring conditions, including posttraumatic stress disorder (PTSD) and traumatic brain injury. In addition, Health eRide leverages gaming principles, text messaging (short message service, SMS), and social networking to increase engagement and retention. METHODS: Pilot test participants were 69 veterans recruited in-person and by mail at a Veterans Health Administration facility, by community outreach, and by a Web-based survey company. Participants completed a mobile-delivered baseline assessment and Health eRide intervention session. During the next 30 days, they had access to a Personal Activity Center with additional stage-matched activities and information and had the option of receiving tailored text messages. Pre-post assessments, administered at baseline and the 30-day follow-up, included measures of pain, pain impact, use of pain self-management strategies, PTSD, and percentage in the Action or Maintenance stage for adopting pain self-management, managing stress, and practicing healthy sleep habits. Global impressions of change and program acceptability and usability were also assessed at follow-up. RESULTS: Among the 44 veterans who completed the 30-day post assessment, there were statistically significant pre-post reductions in pain (P<.001) and pain impact (P<.001); there was some reduction in symptoms of PTSD (P=.05). There were significant pre-post increases in the percentage of participants in the Action or Maintenance stage for adopting pain self-management (P=.01) and for managing stress (P<.001) but not for practicing healthy sleep habits (P=.11). The global impressions of change measure showed that a majority had experienced some level of improvement. User ratings of acceptability were quite high; ratings of usability fell slightly below the mean for digital programs. CONCLUSIONS: Preliminary data demonstrate the potential impact of the Health eRide program for chronic musculoskeletal pain for veterans. The results underscore that simultaneously addressing other behaviors may be a promising approach to managing pain and comorbid conditions. Additional formative research is required to complete development of the Health eRide program and to address areas of usability requiring improvement. A randomized trial with longer follow-up is needed to demonstrate the program's long-term effects on pain and pain self-management.

Racial disparities in health outcomes after spinal cord injury: mediating effects of education and income.

OBJECTIVE: The purpose of this study was to investigate heath disparities as a function of race and gender and the extent to which socioeconomic factors mediate disparities among participants with spinal cord injury. DESIGN: Survey methodology. Cross-sectional data. SETTING: A large Southeastern specialty hospital. PARTICIPANTS: There were 1342 participants in the current analysis, all of whom were identified from patient records. There were 3 inclusion criteria: (a) traumatic SCI, (b) at least 18 years of age at the time of study, and (c) injury duration of more than 1 year. MAIN OUTCOME MEASURES: Six outcomes were measured, including 3 general outcomes (self-ratings, days impacted by poor health, days impacted by poor mental health) and 3 that reflect utilization of services (hospitalizations, days hospitalized, and nonroutine physician visits in the past 2 years). RESULTS: RESULTS of multivariate analysis of variance (MANOVA) indicated significant main effects for both race and gender. Follow-up tests identified racial disparities on 3 of the 6 outcomes, whereas gender disparities were observed for a single outcome. Years of education and household income mediated interrelationships between race and health (but not gender) as racial disparities disappeared after consideration of these factors. CONCLUSIONS: These findings suggest the need to work more diligently to promote better health outcomes among African Americans and to further investigate how socioeconomic factors and access to health care related to diminished health outcomes among African Americans with spinal cord injury.

Assessment of user needs in wireless technologies.

This article presents the results to date of an on-going research project of the Rehabilitation Engineering Research Center on Mobile Wireless Technologies for Persons with Disabilities (Wireless RERC), which was established in the fall of 2001. The purpose of this project is to identify, prioritize, and disseminate information about the ergonomic needs of users with disabilities for mobile wireless technologies. This article describes the findings of two parts of this research project: (a) a survey of user needs, in both paper and accessible Web-based formats; and (b) focus group discussions with groups of persons with disabilities who are users of mobile wireless products and services. The results demonstrate that persons with disabilities are a significant customer market for wireless goods and services and that issues affecting usability for this population are similar to those of customers without disabilities. The article also describes the development of two tools for disseminating project data: (a) a database query tool for access to survey data in real time; and (b) personas depicting the characteristics of wireless customers with disabilities.

Subjective well-being among African-Americans with spinal cord injury: an exploratory study between men and women.

OBJECTIVE: The purpose of this study was to identify gender differences in subjective well-being among 309 African-American participants with spinal cord injury (SCI). DESIGN: Cross-sectional. SETTING: A Southeastern specialty hospital. PARTICIPANTS: There were a total of 309 participants, all of whom were African-Americans. All participants had traumatic SCI, were at least 18 years or older at the time of the study, and a minimum of one year had passed since SCI onset. MAIN OUTCOME MEASURES: Measures of subjective well-being included the Life Situation Questionnaire--Revised, Purpose in Life scale, and the Older Adult Health and Mood Questionnaire. RESULTS: Multiple gender differences were observed, with women reporting higher scores on depressive symptoms and negative affect, but lower scores on purpose in life. Other significant findings were observed related to self-reported problems, with men reporting greater problems with pressure ulcers and sexual issues and women reporting greater problems in several areas related to coping and affect. The only gender difference in life satisfaction indicated greater satisfaction with sex life among women. CONCLUSION: It is clear from the findings that differences do exist among male and female African-Americans with spinal cord injuries. More research is needed to definitively outline differences.

Breast and gynecologic health-screening behaviors among 191 women with spinal cord injuries.

OBJECTIVE: The purpose of this study was to advance the understanding of preventive health behaviors of women with spinal cord injury (SCI) by comparing the frequency of preventive health behaviors (a) between women with SCI and women in the general population, and (b) among women with SCI as a function of race/ethnicity and socioeconomic status (SES). DESIGN: Telephone interviews. PARTICIPANTS: 191 women with SCI who had been treated at 1 of 4 Model SCI Systems hospitals. The sample included 66 white women, 59 African American women, 22 American Indian women, and 44 Hispanic women. MAIN OUTCOME MEASURE: The Behavioral Risk Factor Surveillance System. RESULTS: Study participants reported significant differences in their frequency of either mammograms or Pap smears when compared with the general population. However, no significant differences were found among study participants when rates were compared by race/ethnicity to the general population. Also, no differences were found among the women with SCI as a function of race/ethnicity or income level. CONCLUSION: The results are encouraging, because no deficits in preventive health care were identified among women with SCI as a function of race/ethnicity or SES.

An evaluation of neuroscience nursing research published during the Decade of the Brain.

The purpose of this study was to extend a previous evaluation of neuroscience nursing research to an assessment of the research published during the 1990s--the Decade of the Brain. The evaluation was conducted to assess the focus of neuroscience nursing research and to identify research strategies and scientific methods. The Journal of Neuroscience Nursing, Nursing Research, Research in Nursing & Health, and Western Journal of Nursing Research were canvassed. An assessment form developed by the authors was used to evaluate selected articles published between January 1989 and December 2000. The number of neuroscience research studies published in nursing journals increased substantially during the 1990s. The studies focused more on individuals with neurological disorders and less on neurological trauma. The findings demonstrated major changes in subspecialty area, care orientation, and nature of study variables from that observed in the previous evaluation in which acute care and physiological variables were most representative of the pre-1989 studies. As noted in the previous evaluation, the trend toward theory-then-research studies continued and the scientific methods grew more complex.

Outcomes after spinal cord injury: comparisons as a function of gender and race and ethnicity.

OBJECTIVE: To identify gender and racial and ethnic differences in subjective well-being (SWB), participation, and general health ratings in participants with spinal cord injury (SCI). DESIGN: A multisite, cross-sectional study that used stratified sampling to identify and maximize participation among groups of people traditionally underrepresented in SCI research. SETTING: Four Model Spinal Cord Injury Systems participated in the data collection. The primary site was a large southeastern specialty hospital; the other 3 were in the western and mountain regions of the United States. PARTICIPANTS: A total of 512 participants, 475 of whom were included in the analysis. This group included relatively equal portions of whites, African Americans, American Indians, and Hispanics. Approximately 40% of the sample was women. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The primary outcome measures included 2 measures of SWB (Life Situation Questionnaire-Revised, Older Adult Health and Mood Questionnaire), 1 measure of participation (Craig Handicap Assessment and Reporting Technique), and several items from the Behavioral Risk Factor Surveillance System. RESULTS: The majority of racial and ethnic differences in SWB related to specific life areas (eg, economics, employment), rather than more global outcomes (eg, engagement, health), with whites generally reporting the best outcomes, followed by African Americans. American Indians, and whites generally reported the highest participation scores, whereas limited differences were noted between the racial and ethnic groups on health indicators. Women reported lower satisfaction with health, more poor mental health days, and lower SWB related to home life, but higher SWB related to interpersonal relations. CONCLUSIONS: There are racial and ethnic differences in outcomes after SCI focused primarily on subjective outcomes in areas in which racial and ethnic minorities have traditionally been disadvantaged. The results of this study direct rehabilitation professionals to the outcomes that need to be targeted for intervention to eliminate inequities in outcomes for all persons with SCI.

Patterns of recurrent pressure ulcers after spinal cord injury: identification of risk and protective factors 5 or more years after onset.

OBJECTIVES: To identify risk and protective factors associated with a history of recurrent pressure ulcers among participants with spinal cord injury (SCI). DESIGN: A mail survey was used to identify factors associated with the presence or absence of recurrent pressure ulcers. SETTING: A large specialty hospital in the southeastern United States. PARTICIPANTS: All participants had traumatic SCI, were nonambulatory, 18 years or older, and had been injured at least 5 years. A total of 826 subjects participated, 633 of whom reported a pressure ulcer history that could be classified as to whether they did or did not have a history of recurrent pressure ulcers. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: History of pressure ulcers was measured by a single item that required participants to classify their history into 1 of 5 options, ranging from never having any pressure ulcers to having almost continuous pressure ulcers, often requiring hospitalization. Those who either never had a pressure ulcer or had them mostly for a short period after SCI onset were classified as nonrecurrent, whereas those who reported at least 1 per year were classified as recurrent. RESULTS: Seventy percent of the participants failed to report recurrent pressure ulcers (never had any or had them only immediately after SCI onset), whereas 13% reported a clear pattern of recurring pressure ulcers of 1 or more per year. Logistic regression analyses suggested several general behaviors were protective for recurrent pressure ulcers, including lifestyle, exercise, and diet. Yet none of the behaviors generally recommended during inpatient rehabilitation specifically to prevent pressure ulcers (eg, skin checks weight shifts) were associated with pressure ulcer history. Only 2 risk behaviors were identified (number of cigarettes smoked, use of medication for sleep), although several proxy variables were related to pressure ulcer history. CONCLUSIONS: Pressure ulcer history is a more viable measure of pressure ulcer outcomes than measures taken at a single point in time (current), over a brief period (eg, 1y), or those relying on critical events occurring at any time since SCI onset (ie, surgeries to repair pressure ulcers). A healthy lifestyle appears to be strongly associated with avoiding pressure ulcers, whereas the efficacy of specific prevention behaviors was not demonstrated. Problem solving and coping strategies should be targets for further research.