Perceptions of Occupational Therapists on the Patient Protection and Affordable Care Act: Five Years After Its Enactment.

This study explored the perceptions of occupational therapists regarding the impact and implications of the Patient Protection and Affordable Care Act (PPACA or ACA) on occupational therapy practice. Fifteen occupational therapists participated in an interview to answer open-ended questions related to their thoughts and perceptions regarding the impact and implications of the ACA on their practice. The participants were practicing in eight different states and worked in five different settings with clinical experience ranging from 3 to 38 years; their positions ranged from staff therapist to owner of a free-standing outpatient clinic. Qualitative content analysis was used to synthesize the interview transcripts. Results showed that therapists did not have sufficient knowledge on the various mandates and provisions of the ACA, or were uncertain about what implications the ACA would have on practice, with the ACA affecting some settings more than others. Data revealed the perceived impacts of the ACA on occupational therapy practice include greater attention on documenting outcome-focused care, external accountability pressures on productivity, conscientiousness about clients' insurance coverage, uncertainty about collaborative care delivery, and survival of small businesses. Findings suggest training regarding knowledge about and implications of different elements of the ACA is needed as well as practices needing to promote the services that occupational therapists can provide to improve cost-effectiveness and outcomes in collaborative care environments.

The effectiveness of bowel and bladder interventions in children with spina bifida.

AIM: Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida. METHOD: Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness. RESULTS: Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence status and QOL measures. Interviews, however, reflected how managing continence at home and school more broadly affects QOL. Among practitioners, some focused primarily on optimizing physical health while others focused on activity and participation. INTERPRETATION: While continence is a goal, programs used to achieve this are individualized and outcomes may be affected by differential treatment effects, environmental factors, and/or stigma experienced by children.

Development of items that assess physical function in children who use wheelchairs.

PURPOSE: To assess the content, format, and comprehension of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric physical function related to mobility items for children who use wheelchairs (WCs). METHODS: During a cognitive interview, 14 children, aged 8 to 12 years, who use WCs, verbalized their thoughts when answering PROMIS items. The questionnaire appraisal system was used to code summarized text from the interviews. RESULTS: The children requested items be more specific and include options for reporting adaptive ways of performing and participating. How they would answer the item depended on the situation and specific environmental supports and constraints they may have experienced. CONCLUSIONS: As rehabilitation professionals develop and use self-reported outcome measures, they should explore what is important to children who use WCs regarding their views on physical functioning, the influences of the environment, and variability in the use of devices to assist with functional mobility.

Managing activity difficulties at home: a survey of Medicare beneficiaries.

OBJECTIVE: To describe assistance from helpers and use of assistive technology and environmental modification by community-dwelling people with difficulties in activities of daily living (ADLs) and instrumental activities of daily living (IADLs). DESIGN: Cross-sectional study using the 2004 Medicare Current Beneficiary Survey. SETTING: Community. PARTICIPANTS: Nationally representative sample of 14,500 Medicare beneficiaries (mean age, 71.5 y; 55% female; 49% currently married; 68% living with others; 84% white). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-reported difficulty with ADLs and IADLs; uses of help, assistive technology, and/or environmental modification. RESULTS: Difficulties were reported most frequently for heavy housework, walking, and shopping; money management, shopping, and light housework were reported as activities most often needing a helper. Walking, bathing, and toileting were activities most often needing uses of assistive technology. Bathroom modifications were the most commonly reported environmental modification. Results from a logistic regression showed that advancing age was the primary factor associated with increasing use of helpers and assistive technology or both for difficult activities. CONCLUSIONS: Uses of helpers, assistive technology, and environmental modification are common but vary by type of ADL and/or IADL and age. Focused studies regarding uses of help and access to assistive technology and environmental modification appear needed to support community living. Public education about methods and types of accommodations appears needed and may substitute for or augment guidance from care providers.

A longitudinal evaluation of persons with disabilities: does a longitudinal definition help define who receives necessary care?

OBJECTIVE: To assess, using a longitudinal definition, the impact of disability on a broad range of objective health care quality indicators. DESIGN: Longitudinal cohort study following up with patients over several years. The first 2 interviews, 1 year apart, were used to determine each patient's disability status in activities of daily living (ADLs). Assessment of the health care indicators commenced after the second interview and continued throughout the survey period (an additional 1-3y). SETTING: National survey. PARTICIPANTS: Participants (N=29,074) of the Medicare Current Beneficiary Survey (1992-2001) with no, increasing, decreasing, and stable ADL disability. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The incidence of 5 avoidable outcomes, receipt of 3 preventive care measures, and adherence to 32 diagnostically based indicators assessing the quality of treatment for acute myocardial infarction [AMI], angina, breast cancer, cerebrovascular accident, transient ischemic attack, cholelithiasis, chronic obstructive pulmonary disease [COPD], congestive heart failure, depression, gastrointestinal bleeding, diabetes, and hypertension. RESULTS: For most indicators, less than 75% of eligible patients received necessary care, regardless of disability status. For 5 indicators, less than 50% of patients received appropriate treatment. In a logistic regression analysis that controlled for patient age, sex, race, and income, disability status was a significant factor in 7 quality measures (AMI, breast cancer, COPD, diabetes, angina, pneumonia, annual visits). CONCLUSIONS: Using a longitudinal definition of disability and objective health quality indicators, we found that disability status can be an important factor in determining receipt of quality health care in a broad range of diagnostic categories. However, the impact of disability status varies depending on the indicator measured. In this cohort of patients, the changing nature of a person's disability seems to have less impact than whether they ever have had any functional deficits.

Developing a scale of communicative participation: a cognitive interviewing study.

PURPOSE: To revise and improve the instructions, candidate items and response format for a tool to measure communicative participation. METHOD: Cognitive interviewing techniques, designed to study the process that respondents use to answer survey questions, were used to test a bank of candidate items for a measure of communicative participation. Twelve participants with spasmodic dysphonia (SD), a neurologic condition characterized by voice and speech changes, were asked to complete a sample questionnaire and then were interviewed regarding the clarity of instructions, candidate items and response format. Analysis of the interviews was conducted using qualitative techniques and resulted in a series of modifications to the measurement tool. RESULTS: Problems identified related to candidate items included inadequate context, double-barreled or ambiguous items, redundancy, unclear or generally confusing items, infrequent situations, and cultural sensitivity. Participants preferred response options that asked them to rate interference rather than other dimensions such as satisfaction. CONCLUSIONS; Subtle differences in items and response options make key differences in how participants interpret and make decisions about their responses. Rich contextual information is needed in order to respond to items that sample communicative participation. Participants preferred response options that capture the barriers that they experience when participating in everyday communication situations.

Experiences of living with non-cancer-related lymphedema: implications for clinical practice.

Lymphedema is a chronic medical condition caused by lymphatic insufficiency that can lead to extreme swelling and susceptibility to infection. Physical and psychosocial effects of the condition can have a significant impact on an individual's life and level of participation. Research about experiences of individuals living with lymphedema has focused primarily on women with breast cancer, yet individuals with non-cancer-related lymphedema are a distinct group. In this study, the authors used qualitative description to explore the experience of 7 individuals living with advanced and complicated cases of lymphedema who had been treated in an inpatient setting. Findings reveal the extensive impact lymphedema has on those who live with it. Participants spoke of difficulty finding a correct diagnosis and effective treatment, the importance of their inpatient experiences, and the challenges of daily self-management. The authors make recommendations to increase lymphedema awareness, promote inpatient treatment programs, and create effective self-management techniques.

Satisfaction with communicative participation as defined by adults with multiple sclerosis: a qualitative study.

PURPOSE: This study examined satisfaction with communicative participation as reported by adults with multiple sclerosis (MS). METHOD: Eight community-dwelling adults with MS participated in semi-structured interviews. They were asked to discuss their satisfaction with their communication in a variety of situations. Interviews were analyzed using a constant comparative method of qualitative description. RESULTS: Themes derived included: Comfort, consisting of Ease and Confidence; Success of the Outcome, including Function is Achieved and A Connection is Made; and Personal Meaning of Participation, including Personal Preferences, Comparison with the Past, and Thinking about One's Own Communication. CONCLUSIONS: Participants described multiple facets of satisfaction with communicative participation. Some of the dimensions were similar to those in existing assessment instruments such as levels of ease or difficulty with performance. Participants did not talk about frequency of activities as a key part of their satisfaction. Implications for identifying intervention targets and treatment outcome measurements are provided. LEARNING OUTCOMES: The reader should be able to: 1) define communicative participation and identify key elements of this construct; 2) identify the issues that were most relevant to satisfaction with communicative participation with participants with MS; and 3) identify reasons for greater emphasis on the subjective viewpoint of people with communication disorders in measurement of treatment outcomes.

Managing usual and unexpected pain with physical disability: a qualitative analysis.

OBJECTIVE: With physical disabilities, persons often experience secondary pain that adds to restrictions in activity and participation. We investigated pain-management strategies used by those with physical disabilities. METHOD: Qualitative phenomenological inquiry was used in multiple interviews with (N= 28) adults with physical disabilities (9 with amputation, 7 with cerebral palsy, and 12 with spinal cord injury) and subsequent thematic analysis. RESULTS: Among those with physical disabilities, a distinction is made between usual and unexpected pains. Usual pain is experienced consistently or as a consequence of not getting adequate rest, exercise, or stress-free time. Managing usual pain involves uses of prevention (e.g., exercise/fitness) and/or pragmatic actions through scheduling and pacing daily activities and taking interim retreats. Unexpected pain is experienced periodically and requires an immediate response and change of activity. To manage, persons describe making efforts to create a mind and body disassociation, activating safety nets to support function and alleviate pain, and making decisions to persevere with activity and participation. CONCLUSION: Advising those with physical disabilities to do proactive planning for both usual and unexpected pain may help them to use varied pain-management strategies to enhance function and minimize negative impacts on participation.

Measuring communicative participation: a review of self-report instruments in speech-language pathology.

PURPOSE: To assess the adequacy of self-report instruments in speech-language pathology for measuring a construct called communicative participation. METHOD: Six instruments were evaluated relative to (a) the construct measured, (b) the relevance of individual items to communicative participation, and (c) their psychometric properties. RESULTS: No instrument exclusively measured communicative participation. Twenty-six percent (n = 34) of all items (N = 132) across the reviewed instruments were consistent with communicative participation. The majority (76%) of the 34 items were associated with general communication, while the remaining 24% of the items were associated with communication at work, during leisure, or for establishing relationships. Instruments varied relative to psychometric properties. CONCLUSIONS: No existing self-report instruments in speech-language pathology were found to be solely dedicated to measuring communicative participation. Developing an instrument for measuring communicative participation is essential for meeting the requirements of our scope of practice.

Genetics in occupational therapy education: a survey of professional entry-level programs.

PURPOSE: Advances in genetics indicate a need for occupational therapists to develop literacy and skills in genetics as it relates to lifestyle and occupation. The purpose of this study is to identify genetics content areas taught, instructional methods used, and the importance of teaching genetics at the entry-level in occupational therapy curricula. METHOD: A questionnaire was sent to all entry-level occupational therapy educational programs (N=157). Structured mailing and follow-up were used. RESULTS: The response rate was 63.9%. Most respondents (47%) rate teaching genetics as "moderately important." Genetics content is predominately taught at the introductory or knowledge level rather than at the integration and application level. Respondents indicate a lack of time and space for genetics content and of faculty interest and expertise. DISCUSSION: As occupational therapy practice evolves to include new genetics, curriculum change will need to be implemented. Development of teaching materials and methods addressing genetics is recommended.

Effect of communication disability on satisfaction with health care: a survey of medicare beneficiaries.

PURPOSE: To examine the prevalence and characteristics of community-dwelling Medicare beneficiaries reporting a communication disability and the relationship between that disability and dissatisfaction with medical care. METHOD: A total of 12,769 Medicare Current Beneficiary Survey respondents age 65 and older in 2001 were categorized by level of communication disability. Sampling weights were used to make inferences about the entire Medicare population. RESULTS: Over 16 million beneficiaries reported a communication disability. Hearing problems were most commonly reported (41.99%). The association between dissatisfaction and communication disability was statistically significant (p

Asking the Stakeholders: Perspectives of Individuals With Aphasia, Their Family Members, and Physicians Regarding Communication in Medical Interactions.

PURPOSE: The purpose of this study was to explore the experiences of patients with aphasia, their family members, and physicians related to communication during medical interactions. METHOD: Face-to-face, semistructured interviews were conducted with 18 participants­6 patients with aphasia, 6 family members involved in patient care, and 6 practicing physicians. A qualitative description approach was used to collect and summarize narratives from participants' perspectives and experiences. Participants were asked about experiences with communication during medical interactions in which the family member accompanied the patient. Interviews were audio- and/or video-recorded, transcribed, and then coded to identify main themes. RESULTS: Patients and family members generally described their communication experiences as positive, yet all participants discussed challenges and frustrations. Three themes emerged: (a) patients and family members work as a team, (b) patients and family members want physicians to "just try" to communicate with the patient, and (c) physicians want to interact with patients but may not know how. CONCLUSIONS: Participants discussed the need for successful accommodation, or changing how one communicates, to help facilitate the patients' increased understanding and ability to express themselves. Over- and underaccommodation with communication were commonly reported as problems. Speech-language pathologists have a role to play in helping to improve communication during medical interactions. Implications for current speech-language pathologist practice and future directions of research are discussed.

Understanding upper extremity home programs and the use of gaming technology for persons after stroke.

BACKGROUND: Many persons post-stroke continue to have difficulty using their more involved upper extremity and home programs may be poorly adhered to limiting the amount of practice an individual receives. More information on the experience of traditional home program and the acceptability of a novel home intervention was sought. OBJECTIVE: To qualitatively describe 1) upper extremity use at home, 2) previous home exercise or activity programs, and 3) the acceptability of a novel upper extremity home program, NeuroGame Therapy (NGT), that combines surface electromyography (sEMG) biofeedback and a commercial computer game. METHODS: A purposeful sample of ten persons with moderate to severe upper extremity motor impairment used the NGT intervention in their home for four weeks and completed nested (pre and post) one-on-one interviews. Written transcripts from the interviews were coded and themes were identified to address stated objectives. RESULTS: Participants reported that while use of their upper extremity in daily activities was recommended it occurred infrequently. Most participants described previous home programs as being non-specific, were often not carried out as recommended or were self-modified. Participants found NGT to be engaging and motivating, but reported minimal changes in the functional uses of their upper extremity. CONCLUSION: These findings suggest that after stroke upper extremity use may be infrequent and home program approaches could be re-examined. NGT was reported to be an acceptable home intervention, but it will require further development and study to understand its value and role in post-stroke rehabilitation.

Sensory impairment after stroke: Exploring therapists' clinical decision making

BACKGROUND: Stroke survivors experience sensory impairments that significantly limit upper-limb functional use. Lack of clear research-based guidelines about their management exacerbates the uncertainty in occupational therapists' decision making to support these clients. PURPOSE: This study explores occupational therapists' clinical decision making regarding upper-limb, post-stroke sensory impairments that can ultimately inform approaches to support therapists working with such clients. METHOD: Twelve therapists participated in a qualitative descriptive study. Transcripts of semi-structured interviews were analyzed using content analysis. FINDINGS: Three overarching categories were identified: deciding on the focus of interventions (describing intervention choices), it all depends (outlining factors considered when choosing interventions), and managing uncertainty in decision making (describing uncertainty and actions taken to resolve it). IMPLICATIONS: Providing training about post-stroke sensory impairment and decision making may improve therapists' decision making and ultimately improve client outcomes. Further research is needed to understand the impact of uncertainty on occupational therapy decision making and resulting care practices.

Supports and barriers as experienced by individuals with vision loss from diabetes.

PURPOSE: The purpose of this study was to explore the perceived environmental supports and barriers to daily functioning for people with low vision due to diabetic retinopathy and the adaptive strategies used by these individuals to improve person-environment fit. METHOD: The researchers used a qualitative descriptive approach with eight participants with low vision as a result of diabetic retinopathy. Data collection methods included semi-structured interviews, observation of participants' home environments and focus group discussions. RESULTS: Participants described aspects of the physical environment, the social environment and psychological adjustment as important in adapting to vision loss and diabetes. Four themes emerged from the data analysis: "It's a Complicated Life", "The World Isn't Accessible", "Making it Work" and "Learning to be Blind". CONCLUSIONS: Physical and social environmental influences on functioning are complex. Adaptation to vision loss is an ongoing process that may be aided by peer interactions and more community-based rehabilitation. To best rehabilitate people with low vision due to diabetic retinopathy, the influence of both the physical and social environment along with psychological adaptation need to be considered. Periodic rehabilitation, interventions taking place in community settings and the formal inclusion of peers in the rehabilitation process may be indicated. Implications for Rehabilitation Consideration of the social as well as the physical environment is essential in the rehabilitation of people with low vision due to diabetic retinopathy. Adaptation to vision loss by those with diabetic retinopathy is complicated by the fact that diabetes is a systemic disease that affects multiple body systems. Psychological adaptation to vision loss is characterized by cycles of grieving and acceptance, which affects readiness for rehabilitation. Alternative approaches to rehabilitation may be indicated for people with low vision due to diabetic retinopathy, including periodic intervention over time and the inclusion of peers in the rehabilitation process.

A qualitative study of adult AAC users' experiences communicating with medical providers.

PURPOSE: To study the experiences of adults who use augmentative and alternative communication (AAC) systems and methods when interacting with medical providers, specifically primary care providers. METHOD: Individual face-to-face interviews were conducted with 12 participants, four of whom also participated in an online focus group. Diagnoses of the participants included cerebral palsy, undifferentiated developmental disability, head and neck cancer, amyotrophic lateral sclerosis and primary lateral sclerosis. Transcripts from the interviews and the focus group were analyzed to create a list of codes. From these codes themes that captured particular concepts discussed were identified. RESULTS: Participants described multiple frustrations in communicating with medical care providers. Themes that arose included: planning and preparing for the appointment, time barriers, inappropriate assumptions, relationship building and establishing rapport, medical decision making and implementing the plan. All but one participant reported bringing a caregiver with them to their appointments and this person, whether a family member, friend or paid aide, had a substantial role throughout the appointment. CONCLUSIONS: The participants' stories highlight important barriers they experience when communicating with medical providers. These barriers bring attention to the need for education for physicians, caregivers and patients with communication disabilities, along with increased research to improve patient-provider communication. IMPLICATIONS FOR REHABILITATION: Patients with communication disabilities face multiple barriers to communicating with medical care providers. Patients, caregivers, and medical care providers all play a role in effective and ineffective communication during appointments. Education for medical care providers, caregivers, and patients with communication disabilities, along with increased research is needed to improve patient-provider communication.

Pain assessment using the NIH Toolbox.

OBJECTIVE: Pain is an important component of health and function, and chronic pain can be a problem in its own right. The purpose of this report is to review the considerations surrounding pain measurement in the NIH Toolbox, as well as to describe the measurement tools that were adopted for inclusion in the NIH Toolbox assessment battery. METHODS: Instruments to measure pain in the NIH Toolbox were selected on the basis of scholarly input from a diverse group of experts, as well as review of existing instruments, which include verbal rating scales, numerical rating scales, and graphical scales. RESULTS: Brief self-report measures of pain intensity and pain interference were selected for inclusion in the core NIH Toolbox for use with adults. A 0 to 10 numerical rating scale was recommended for measuring pain intensity, and a 6-item Patient Reported Outcome Measurement Information System (PROMIS) short form for measuring pain interference. The 8-item PROMIS Pediatric Pain Interference measure was recommended as a supplemental measure. No specific measure was recommended for measuring pain intensity in children. CONCLUSIONS: Core and supplemental measures were recommended for the NIH Toolbox. Additional measures were reviewed for investigators who seek tools for measuring pain intensity in pediatric samples.

Frequency of purchase and associated costs of assistive technology for Washington State Medicaid program enrollees with spina bifida by age.

BACKGROUND: Assistive technology (AT) is one strategy to mitigate or eliminate barriers to independence for individuals with disabilities, including those with spina bifida (SB). However, little is known about current use and costs of AT for people with SB, including the cost burden to medical insurance payees. OBJECTIVE: The aim of this study was to evaluate frequency of AT purchases and their associated costs for individuals with SB covered by the Washington State Medicaid program. Additionally, we sought to compare Medicaid reimbursement for AT to the overall Medicaid reimbursement for all medical care for these individuals. METHODS: Data included all electronic claims and eligibility records of persons covered by the Medicaid program over a 4-year period (2001-2004) who had at least one service with a coded diagnosis of SB. Procedure codes were reviewed and grouped into the following AT categories: manual wheelchairs, powered wheelchairs, wheelchair cushions and seats, wheelchair accessories and repairs, wheelchair rental, ambulatory aids, orthotic and prosthetic devices, positioning aids, bathroom equipment, beds and bed accessories, and communication and hearing aids. Age group analyses were conducted after dividing patients into 3 age groups (0-15, 16-25, and 26+). Further subgroup analyses were done for individuals with dual or capitated medical coverage compared with those who had fee-for-service Medicaid-only coverage. RESULTS: A total of 984 individuals with at least one diagnosis of SB during the 4-year study period were identified. On average, approximately one third of individuals made claims for some type of AT per year; the majority of these AT claims (87%) were for mobility-related AT. Average annual Medicaid cost of AT was $494 per enrollee and AT accounted for 3.3% of all Medicaid costs for these individuals. AT-related costs were highest for those aged 0-15 years and lowest for those aged 16-25 years. Persons with only fee-for-service Medicaid coverage had more than twice the annualized Medicaid AT-related expenditures compared to those with additional coverage or who were covered under a Medicaid capitation plan. CONCLUSIONS: Medicaid reimbursement for AT, as classified in this study, is a relatively low percentage of overall medical costs for individuals with SB. Because of the small percentage of non-mobility-related AT paid for in this study, we believe there may be a substantial unmet need for AT in this population and/or that individuals with SB may have significant AT-related out-of-pocket expenses. Given its large potential impact and relatively low cost burden to Medicaid, AT is a "good buy" and coverage for AT should be expanded.