An analysis of caregiver burden assessments using the International Classification of Functioning, Disability, and health (ICF): what aspects of burden are measured, and what is missing?

PURPOSE: To determine if commonly used caregiver burden assessments, Zarit Burden Interview(ZBI), Caregiver Reaction Assessment Scale(CRA), Caregiver Burden Inventory(CBI), and Caregiver Strain Index(CSI), provide clinicians and researchers with a comprehensive understanding of the burden that informal caregivers face. MATERIALS AND METHODS: Meaningful concepts, identified from these assessments, were linked to the most appropriate and precise International Classification of Functioning, Disability, and Health (ICF) code by experienced coders using a validated standardized ICF linking technique. Descriptive statistics were used to examine and compare the comprehensiveness of each assessment. RESULTS: A total of 120 meaningful concepts identified from 83 items, represented three of the four ICF domains: 1) Body functions (27%), 2) Activities and Participation (29%), and 3) Environmental factors (5%). Eleven percent of concepts were too vague to be coded, and 25% were clearly defined but not included in the ICF. Six of the 17 epidemiologic factors of caregiver burden were covered by the assessments combined. CONCLUSIONS: Linking commonly used caregiver burden assessments to the ICF and comparing the results to the epidemiologic factors of caregiver burden suggests that the assessments may not be capturing many of the factors associated with caregiver burden. This, in turn, may be hindering the development and implementation of effective caregiver education and interventions.

A comparison between the ICF coding results and the 'epidemiology of caregiver burden' suggests that the most common informal caregiver burden assessments are not comprehensive.Informal caregivers play a key role in the rehabilitation process. Knowledge of what aspects of burden are and are not included in each of the caregiver burden assessments will strengthen clinical decision-making about caregiver support, education, and interventions.A mixed-methods approach to caregiver burden assessment may provide a more comprehensive understanding of the burden.

Feasibility of Problem-Solving Training During Inpatient Rehabilitation in Patients With Stroke.

IMPORTANCE: Stroke survivors report feeling unprepared to manage challenges that arise during the transition from hospital to home. Cultivating problem-solving skills before discharge may better prepare patients for the transition home. OBJECTIVE: To determine the feasibility of a protocol to deliver Problem-Solving Training (PST) to stroke survivors during inpatient rehabilitation to increase goal achievement. DESIGN: Single-group feasibility study. SETTING: Academic and county hospital inpatient rehabilitation units. PARTICIPANTS: Adult patients with stroke and planned discharge home. INTERVENTION: Up to six PST sessions over 2 to 3 wk followed by 3 mo of mobile health boosters. RESULTS: Of 17 eligible participants, 15 consented and 11 completed three or more PST sessions. Six participants used electronic boosters, achieving at least one goal postdischarge. Participants reported high satisfaction with PST (Client Satisfaction Questionnaire-8 M score = 29.3, SD = 4.4; range = 8-32), moderate depression at baseline (eight-item Patient Health Questionnaire [PHQ-8] score, M = 11.0, SD = 6.1; range = 0-27), mild depression at 3 mo postdischarge (PHQ-8 score, M = 8.3, SD = 5.5), moderately high self-efficacy at baseline (General Self-Efficacy Scale [GSE] score, M = 31.1, SD = 7.3; range = 10-40), and a self-efficacy increase at 3 mo postdischarge (GSE score, M = 34.1, SD = 4.2). CONCLUSIONS AND RELEVANCE: PST among patients with stroke during inpatient rehabilitation was feasible, and participants demonstrated improvements in clinical outcomes and goal attainment. Barriers to participation and adherence should be addressed in future studies. What This Article Adds: Teaching patients problem-solving skills early after a stroke using a metacognitive strategy is feasible and may decrease depression and increase self-efficacy while fostering independent goal setting and problem solving.

Linking Problems Reported by Care Partners of Individuals With Alzheimer's Disease and Lewy Body Dementia to the International Classification of Functioning Disability and Health.

Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF). Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia.

Examining Care Partner Problems Using the International Classification of Functioning, Disability and Health.

IMPORTANCE: Care partners report that they are unprepared to manage the care of their loved one during the predischarge rehabilitation process and at the time of transition from hospital to home. OBJECTIVE: To link, classify, and describe care partner-reported problems using the International Classification of Functioning, Disability and Health (ICF) to explore care partner experiences during the predischarge rehabilitation process. DESIGN: We linked meaningful concepts collected during problem-solving training implemented with care partners of patients with sudden-onset conditions to the ICF using a standardized linking technique. SETTING: Health care institution. RESULTS: Care partner-reported problems were linked to 13 of the 30 ICF chapters. Activities and participation was most frequently addressed, followed by body functions. Care partners most commonly reported problems in the areas of emotional function, major life areas, self-care, domestic life, interpersonal relationships, and sleep functions. CONCLUSIONS AND RELEVANCE: The ICF can be used to examine and describe care partners' health-related experiences. Care partners experience myriad problems related to activities and participation, body functions, environmental factors, and personal health before the care recipient's initial discharge from the hospital. What this Article Adds: Care partners' problems early in the rehabilitation process are complex and interrelated. The ICF can serve as a framework for a systematic approach to identifying care partner needs, as it has for patients with a variety of diagnoses.

Use of mHealth Technology for Patient-Reported Outcomes in Community-Dwelling Adults with Acquired Brain Injuries: A Scoping Review.

The purpose of our scoping review was to describe the current use of mHealth technology for long-term assessment of patient-reported outcomes in community-dwelling individuals with acquired brain injury (ABI). Following PRISMA guidelines, we conducted a scoping review of literature meeting these criteria: (1) civilians or military veterans, all ages; (2) self-reported or caregiver-reported outcomes assessed via mobile device in the community (not exclusively clinic/hospital); (3) published in English; (4) published in 2015-2019. We searched Ovid MEDLINE(R) < 1946 to 16 August 2019, MEDLINE InProcess, EPub, Embase, and PsycINFO databases for articles. Thirteen manuscripts representing 12 distinct studies were organized by type of ABI [traumatic brain injury (TBI) and stroke] to extract outcomes, mHealth technology used, design, and inclusion of ecological momentary assessment (EMA). Outcomes included post-concussive, depressive, and affective symptoms, fatigue, daily activities, stroke risk factors, and cognitive exertion. Overall, collecting patient-reported outcomes via mHealth was feasible and acceptable in the chronic ABI population. Studies consistently showed advantage for using EMA despite variability in EMA timing/schedules. To ensure best clinical measurement, research on post-ABI outcomes should consider EMA designs (versus single time-point assessments) that provide the best timing schedules for their respective aims and outcomes and that leverage mHealth for data collection.

Linking the behavioral assessment screening tool to the international classification of functioning, disability, and health as a novel indicator of content validity.

Purpose: To use the International Classification of Functioning, Disability, and Health (ICF) to classify and describe the concepts of the Behavioral Assessment Screening Tool (BAST), a measure of behavioral disruptions after traumatic brain injury (TBI).Methods: Meaningful concepts in the BAST were linked to the International Classification of Functioning to (1) further explore the validity of the conceptual model of behavior; (2) demonstrate ICF linking as a novel indicator of the content validity; (3) identify International Classification of Functioning concepts that characterize behavior; (4) determine the comprehensiveness of the BAST.Results: The body functions component and the activities and participation component were most frequently addressed in the BAST. The majority of the TBI Core Set categories were included in the BAST and the manifest and latent coders agreed 85% of the time.Conclusions: Linking BAST concepts to the International Classification of Functioning demonstrated the BAST's content validity and comprehensiveness. This approach provides a model for how ICF coding could be used to assess content validity.Implications for RehabilitationICF coding can be used to assess content validity and refine rehabilitation measures.The Behavioral Assessment Screening Tool can be used for clinical and research purposes to assess behavior as it relates to a wide range of ICF TBI Core Set categories.

Understanding the Experience of Early Supported Discharge from the Perspective of Patients with Stroke and Their Carers and Health Care Providers: A Qualitative Review.

A systematic review of qualitative studies that examined the experience of early supported discharge (ESD) from the perspective of patients with stroke and their caregivers and health care providers revealed an emphasis on psychosocial aspects-the patient-provider relationship, the value of the home environment, and the ability to tailor treatment to meet patient-oriented goals. Patients, caregivers, and providers stressed the importance of clear and systematic communication throughout the ESD process to support transitions, prevent duplication of services, foster trust in relationships, and ensure that patients and caregivers have the knowledge and skills required to manage a chronic condition long term.

Feasibility Study of Problem-Solving Training for Care Partners of Adults With Traumatic Brain Injury, Spinal Cord Injury, Burn Injury, or Stroke During the Inpatient Hospital Stay.

OBJECTIVE: To determine the feasibility of delivering an evidence-based self-management intervention, problem-solving training (PST), to care partners of individuals with traumatic brain injury (TBI), spinal cord injury (SCI), burn injury, or stroke during the inpatient hospital stay. DESIGN: In this single group pre-post intervention pilot feasibility study. SETTING: Inpatient rehabilitation or acute care and community. PARTICIPANTS: Care partners (spouse or partner, family member, friend who is in any way responsible for the health or well-being of the care recipient) of individuals with TBI, SCI, burn injury, or stroke (N=39). INTERVENTION: PST is a metacognitive self-management intervention that teaches individuals a global strategy for addressing self-selected problems. Participants received up to 6 sessions of PST in person or via telephone during their care recipient's inpatient stay. MAIN OUTCOME MEASURES: We measured feasibility of recruitment, intervention delivery, and postintervention use of a smartphone app (Care Partner Problem Solving [CaPPS]) and participant satisfaction (Client Satisfaction Questionnaire [CSQ]) and engagement (Pittsburgh Rehabilitation Participation Scale [PRPS]) with the intervention. RESULTS: Of 39 care partners approached, n=10 (25.6%) were ineligible. Of n=29 (74.4%) who were eligible, n=17 (58.6%) refused, and n=12 (41.4%) consented, of whom n=8 (66.7%) completed ≥3 PST sessions. Not perceiving any benefit was the most common reason for refusal, followed by no interest in research. Participants were very satisfied with PST (CSQ mean=3.35, SD=0.60), reported strong working alliance (Working Alliance Inventory mean=6.8, SD=3.1), and demonstrated very good engagement (PRPS mean=4.75, SD=1.41). CaPPS was downloaded and used by only n=3 participants. CONCLUSIONS: Delivering a self-management intervention to care partners during the care recipient's acute hospital stay is feasible for a subset of potential participants. Short lengths of stay, language fluency, and perceiving no potential benefit were noted barriers. Boosters via smartphone app have potential, but several barriers must first be overcome.

Identifying content gaps in health status measures for intermittent claudication using the International Classification of Functioning, Disability and Health.

OBJECTIVE: The Walking Impairment Questionnaire (WIQ) and Intermittent Claudication Questionnaire (ICQ) are commonly used patient-reported functional outcome measures for intermittent claudication, but their functional representation has not been characterized. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework comprehensively describes health-related function and has been used to evaluate health status and quality of life (QOL) measures. We applied a content analysis technique commonly used in functional rehabilitation research to evaluate ICF domains represented by WIQ and ICQ to characterize their health status and functional representation. METHODS: The overall perspective of each question was assigned as health status-function, health status-disability, Environment-facilitator, Environment-barrier, or QOL. All meaningful concepts in each question were identified and linked to the most appropriate and precise ICF code from the hierarchy of component, chapter, or category using the validated technique. A 20% random sample of questions was secondarily coded with disagreements resolved by discussion. RESULTS: Codability was agreed upon for 87% of questions; agreement was 100% on component and chapter and 88% on category. WIQ contains 18 concepts among 14 questions (1.3 concepts per question); all questions are from the health status-disability perspective. All WIQ concepts are from the "Activities/Participation-d" ICF component, "Mobility-d4" chapter. "Walking long distances" (d4501, >1 km) is omitted. ICQ contains 37 codable concepts among 16 questions (2.3 concepts per question). Thirteen questions are from health status-disability perspective, three from QOL. Sox of the nine chapters of the "Activities/Participation-d" ICF component are represented by 20 of 37 concepts; 11 of 20 in the "Mobility-d4" chapter. The other "Activities/Participation-d" chapters and categories in ICQ are "Learning/applying knowledge" ("thinking-d163"), "General tasks/demands" ("carrying out daily routine-d230"), "Domestic life" ("shopping-d6200," "doing housework-d640"), "Major life areas" ("Maintaining a job-d8451"), and "Community life" ("socializing-d9205," "hobbies-d9204"). "Body Functions-b" ICF component is represented 11 times, covering pain, numbness, emotion, mood, and cardiovascular functions. "Body Structures-s" is represented three times as lower extremity. Neither WIQ nor ICQ specifically addresses "Walking on different surfaces," (64,502) "Walking around obstacles" (d4503), or "Moving around using equipment" (d465), which includes assistive devices. Walking on an incline is not addressed in WIQ, ICQ, or the ICF. CONCLUSIONS: Applying this ICF-based content assessment methodology to patient-reported vascular disease outcome measures is feasible, representing a novel method of assessing such instruments. WIQ's scope is limited; it does not address functional capacity and covers only health status pertaining to walking disability. The ICQ is more inclusive, but concept density may obscure meaning. Neither instrument is functionally comprehensive and both have significant omissions that should be considered for inclusion.

Burn patients' return to daily activities and participation as defined by the International Classification of Functioning, Disability and Health: A systematic review.

The World Health Organization's International Classification of Functioning, Disability and Health (ICF) is a universal classification system of health and health-related domains. The ICF has been successfully applied to a wide range of health conditions and diseases; however, its application in the field of burn recovery has been minimal. This systematic review uses the domains of the ICF component 'activities and participation' to explore: (1) the extent to which return to daily activities and community participation after burn has been examined in the pediatric population, (2) the most common assessments used to determine activity and participation outcomes, and (3) what activity and participation areas are most affected in the pediatric burn population after discharge from acute care. Results determined that it is difficult to draw overarching conclusions in the area of return to 'activities and participation' for children with burn based on the paucity of current evidence. Of the studies conducted, few examined the same subtopics or used similar measurements. This suggests a need for more robust studies in this area in order to inform and improve burn rehabilitation practices to meet the potential needs of burn patients beyond an acute care setting.

The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

BACKGROUND: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time. METHODS: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined. RESULTS: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective. CONCLUSION: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery. Implications for Rehabilitation A better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed. This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

The multicenter benchmarking study of burn injury: A content analysis of the outcome measures using the international classification of functioning, disability and health.

OBJECTIVE: To link, classify and describe the content of the Multicenter Benchmarking Study Burn Outcomes Questionnaires (BOQ) using the International Classification of Functioning, Disability and Health (ICF) to determine if the information garnered provides researchers with the data necessary to develop a comprehensive understanding of life after burns. METHODS: Two ICF linking experts used a standardized linking technique endorsed by the World Health Organization to link all BOQ concepts to the ICF. Linking results were analyzed to determine the comprehensiveness of each of the five measures. RESULTS: The activities and participation component was most frequently addressed followed by the body functions component. Environmental factors are not extensively covered and body structures are not addressed. ICF chapter and category distribution were skewed and varied between assessments. The majority of BOQ items are of the health status perspective. CONCLUSION: BOQ item composition could be improved with a more even distribution of pertinent ICF topics. Assessment authors may consider addressing the impact of environmental factors on participation. Including body structure concepts would allow investigators to track structural deformation and/or developmental delay. Generally speaking, this data should not be used to examine quality of life outcomes.

Discharge Destination after Elective Femoropopliteal Bypass in Patients without Critical Ischemia.

Femoropopliteal bypass (FPB) remains a widely accepted treatment option for symptomatic leg ischemia, even in patients without features of critical limb ischemia (CLI). These patients are revascularized to improve symptoms of exertional limb pain and the goal of such treatment is to increase their ability to ambulate within the community. Therefore, the anticipated initial discharge disposition for a patient without CLI undergoing FPB is back to their home. This study examined the disposition at initial discharge of such patients. Data from the 2012 National Surgical Quality Improvement Program registry was queried for all elective FPB performed in patients without CLI. Analysis was limited to patients surviving to initial discharge who were living independently at home before surgery. Initial disposition was defined as to HOME or to a FACILITY (either rehabilitation or skilled nursing); these constituting the study groups. Univariate analysis and multivariable logistic regression were performed to identify patient risk factors for failure to discharge to home. In-hospital and postoperative events were also recorded and compared. Significance was defined at P ≤ 0.05. In National Surgical Quality Improvement Program 2012, 1060 cases of elective FPB in patients without CLI were found. The mean± SD age of the population was 65 ± 9 years; 359 (34%) of patients were female; 198 (19%) had a reported race other than white; and most (893, 84%) had hypertension. 60 (6%) patients failed to discharge to home (26 to rehabilitation, 34 to skilled nursing). On univariate analysis, age (FACILITY 68 ± 11 years vs HOME 65 ± 9 years, P = 0.009), female gender (55% vs 37%, P < 0.001), nonwhite race (30% vs 18%, P = 0.007), and a history of diabetes (48% vs 33%, P = 0.01), dialysis (5% vs 1.3%, P = 0.02) congestive heart failure (5% vs 1.1%, P = 0.01), or a stroke (cerebrovascular accident, 5% vs 2.6%, P = 0.01) were found to predict failure to discharge to home. On multivariate analysis, female gender [odds ratio (OR) = 2.4, 95% confidence interval = 1.4-4.1, P = 0.002], and a history of congestive heart failure (OR = 4.7, 1.2-18, 0.03] or cerebrovascular accident (OR = 3.4, 1.9-9.4, 0.02) independently predicted failure to discharge to home. FACILITY patients had higher rates of infectious complications (8.3% vs 1.4%, P < 0.001), myocardial infarction (3.3% vs 0.8%, P = 0.05), operative transfusion (22% vs 5.8%, P < 0.001), and unplanned reoperation (17% vs 2.4%, P < 0.001) during their initial hospitalization. Elective FPB results in a low but not negligible failure of initial return to the community in patients without CLI. Female gender and serious comorbidities predict initial discharge to a facility, which is associated with a complicated hospital course. Careful patient selection is important to achieve good outcomes in this population and furthermore study into the specific preoperative functional and socioeconomic factors predicting failure of early return to the community is warranted.