Catherine Hawes

Summarizing activity limitations in children with chronic illnesses living in the community: a measurement study of scales using supplemented interRAI items

BackgroundTo test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings.MethodsAnalyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA) from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample.ResultsThe two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with) a childs developmental stage or age. The results for these scales and items were consistent across the two independent samples.ConclusionsUnpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information on the activity limitations of children. One can summarize these data in scales that are both internally consistent and valid. Researchers and clinicians can use supplemented interRAI items to provide guidance for professionals and programs serving children, as well as older persons. This research emphasizes the importance of developing medical information systems that allow one to integrate information not only across care settings but also across an individuals life course.

Urban and rural differences in end-of-life pain and treatment status on admission to a nursing facility

Individuals receiving end-of-life (EOL) care may have needs that are unrecognized or treated inappropriately. Yet, very little is known about differences in pain and special-care needs of EOL patients admitted to rural nursing facilities compared with urban nursing facilities, and whether the differing payer mix in urban and rural facilities affects the treatment ordered on admission. We examine a nationally representative sample of 6,084 EOL patients upon admission to nursing homes to examine differences in diseases, pain assessments, and treatment orders. We found that rural EOL residents have higher rates of congestive heart failure, cancer, renal failure, and emphysema than urban EOL residents and are significantly more likely to report frequent pain, however, they are less likely to receive treatments such as IV medications, dialysis, and wound care.

Severity of Children's Intellectual Disabilities and Medicaid Personal Care Services

OBJECTIVESnThis research investigated the relationship between a childs reported intellectual disability (ID) level and caregivers reports of the childs health status to predict Medicaid Personal Care Services (PCS) hours authorized for that child. We also investigated how activity limitations in the home varied with the level of ID.nnnDESIGNnThe sample included 1,108 community-residing children with a reported level of ID in the Texas Medicaid system and who were assessed for the PCS program. All data were collected with the Personal Care Assessment Form (PCAF), an instrument developed by the authors for evaluating childrens PCS needs. Case managers completed the PCAF in the childs home with the child and primary caregivers present. Structural equation modeling (SEM) was used to test a model reflecting the role of ID and other characteristics of the child in determining the number of PCS hours authorized. Additional analyses revealed the degree to which variation among the case managers affected the number of hours authorized.nnnRESULTSnID level and other individual characteristics had a significant effect on reports of a childs activity limitations (R2 = .67), which in turn affected the hours of PCS authorized (R2 = .27). We found no significant direct relationship between ID level and PCS hours: ID level had an indirect relationship on PCS hours through activity limitations. When the variance in hours authorized was decomposed, individual characteristics accounted for 20% of the variance and case managers accounted for 14%.nnnCONCLUSIONSnAssessments of caregiver and child strengths and limitations in the home are critical in the allocation of Medicaid home-based services, above and beyond the information conveyed by demographic and diagnostic data. Implications for home-based assessments of functional limitations and needs for family caregivers and their children with ID are discussed.

The interRAI Pediatric Home Care (PEDS HC) Assessment: Evaluating the Long-term Community-Based Service and Support Needs of Children Facing Special Healthcare Challenges

The vast majority of assessment instruments developed to assess children facing special healthcare challenges were constructed to assess children within a limited age range or children who face specific conditions or impairments. In contrast, the interRAI Pediatric Home Care (PEDS HC) Assessment Form was specifically designed to assess the long-term community-based service and support needs of children and youth aged from four to 20 years who face a wide range of chronic physical or behavioral health challenges. Initial research indicates that PEDS HC items exhibit good predictive validity–-explaining significant proportions of the variance in parents’ perceptions of needs, case managers’ service authorizations, and Medicaid program expenditures for long-term community-based services and supports. In addition, PEDS HC items have been used to construct scales that summarize the strengths and needs of children facing special healthcare challenges. Versions of the PEDS HC are now being used in Medicaid programs in three states in the United States.

Medicaid Personal Care Services and Caregivers' Reports of Children's Health: The Dynamics of a Relationship

OBJECTIVEnTo investigate the relationship between Medicaid Personal Care Services (PCS) and caregivers reports of activity (activities of daily living [ADL]) limitations for children with chronic health problems.nnnDATA SOURCES/STUDY SETTINGnPrimary data collected in 2008 and 2009. A state Medicaid program was the setting. The focus was children receiving Medicaid PCS.nnnDATA COLLECTIONnMedicaid case managers assessed children to determine their need for PCS, using information provided by the child or informal caregivers. Two thousand seven hundred assessments were provided to researchers directly from case managers.nnnPRINCIPAL FINDINGSnMedical conditions and impairments explained 58 percent of the variance in the childs activity limitations. Activity limitations and problem behaviors explained 28 percent of the variance in PCS hours authorized. Which case manager completed the assessment also played a substantial role in determining hours of care.nnnCONCLUSIONSnCaregivers reports of the severity of a childs activity limitations effectively summarize the effects of conditions and impairments on the childs ADL performance and have a significant impact on the level of services provided. Assessors often respond differently to childrens characteristics and circumstances as they move from assessment to decisions concerning care provision. Our results imply that the provision of appropriate services may be enhanced when both case managers and caregivers play an active role in decisions concerning care provision.

Reliability and the measurement of activity limitations (ADLs) for children with special health care needs (CSHCN) living in the community

Purpose.u2003Meeting the personal care challenges of children with special health care needs (CSHCN) living in the community demands a reliable assessment of their abilities to perform activities of daily living (ADLs). This research investigates factors affecting the inter-rater reliability of functional assessments of CSHCN conducted in the home. Methods.u2003Dual-standardised assessments were conducted with 236 community-dwelling CSHCN seeking or receiving Medicaid Personal Care Services (PCS) in a single state in USA. Results.u2003Analyses revealed that assessments of CSHCN with the greatest or least amount of activity limitations exhibited the greatest agreement. The greatest disagreement occurred when assessors faced children with moderate to moderately severe activity limitations. Specific ADLs, where the greatest and least agreements occurred, varied by the level of the childs overall activity limitation. Conclusions.u2003These results imply that the most serious challenges to the reliability of home-based assessment of ADLs among CSHCN occur in cases of children with moderate or moderately severe activity limitations.

It's a family affair: consumer advocacy for nursing-home residents in the United States

ABSTRACT Nursing homes in the United States have for over 40-years been riddled with evidence of poor performance. To combat problems in this industry, state and federal governments developed an elaborate monitoring and regulatory structure. At the same time, an important citizens movement involving nursing-home consumer advocacy groups (CAGs) came to life. This paper presents the results of a postal survey of 47 active nursing-home consumer advocacy groups. They indicate that the majority of these organisations were started by an individual dissatisfied with the care provided to a family member. The political arena in which these organisations were most active was State legislatures. Though they varied considerably, the average CAG operated on a thin financial margin, largely supported by member contributions and donations. These organisations defined their success in terms of their ability to generate policy changes at the State level. Unfortunately, as they pursued these changes, they often failed to develop the organisational infrastructure necessary to assure the CAGs continued operation. When CAGs ceased operations, it was in most cases the loss of the organisations original leader or the cumulative effects of the constant struggle to maintain adequate financial resources.

Personal care services provided to children with special health care needs (CSHCN) and their subsequent use of physician services

BACKGROUNDnMedicaid Personal Care Services (PCS) help families meet childrens needs for assistance with functional tasks. However, PCS may have other effects on a childs well-being, but research has not yet established the existence of such effects.nnnOBJECTIVESnTo investigate the relationship between the number of PCS hours a child receives with subsequent visits to physicians for evaluation and management (E&M) services.nnnMETHODSnAssessment data for 2058 CSHCN receiving PCS were collected in 2008 and 2009. Assessment data were matched with Medicaid claims data for the period of 1 year after the assessment. Zero-inflated negative binomial and generalized linear multivariate regression models were used in the analyses. These models included patient demographics, health status, household resources, and use of other medical services.nnnRESULTSnFor every 10 additional PCS hours authorized for a child, the odds of having an E&M physician visit in the next year were reduced by 25%. However, the number of PCS hours did not have a significant effect on the number of visits by those children who did have a subsequent E&M visit. A variety of demographic and health status measures also affect physician use.nnnCONCLUSIONSnMedicaid PCS for CSHCN may be associated with reduced physician usage because of benefits realized by continuity of care, the early identification of potential health threats, or family and patient education. PCS services may contribute to a childs well-being by providing continuous relationships with the care team that promote good chronic disease management, education, and support for the family.

Care provision in housing with supportive services: The importance of care type, individual characteristics, and care site

Housing with supportive services is an important long-term sector, but information about care provision to residents in these settings is largely unavailable. The role of individual characteristics versus facility identity in determining how care is provided is completely unexplored. Data from 60 facilities in a single state were used to investigate the degree to which individual characteristics and facility identity determined how much care was provided to residents. Individual characteristics had the greatest impact on the amount of direct care time received by individuals. Care that was dementia oriented (i.e., cueing), however, was more strongly affected by the identity of the facility than by individual characteristics. These results have important implications for how consumers should think about seeking, and policy makers should think about supporting, care for those with impaired cognitive status who utilize housing with supportive services.

Nursing Homes and the Affordable Care Act: A Cease Fire in the Ongoing Struggle Over Quality Reform

Most provisions in the Affordable Care Act that affect nursing homes originated in two earlier attempts at reform, both of which failed multiple times in prior Congressional sessions: the Elder Justice Act and the Nursing Home Transparency and Improvement Act. Both of these earlier efforts focused on improving quality and reducing elder abuse in nursing homes by strengthening oversight and enforcement penalties, expanding staff training, and increasing the information on nursing home quality available to consumers and regulators. Each bill addressed problems that were serious, widespread, and had persisted for years, but each failed to pass on its own. The Affordable Care Act, with its own momentum, became the vehicle for their passage. However, the reasons the bills failed in these earlier efforts suggest implementation challenges now that they have ridden into law on the coattails of the more general effort to reform the health care sector.