Pediatric Home Health Care Research Articles

Access and Quality of Pediatric Home Healthcare: A Systematic Review

Despite the rising prevalence of children with medical complexity who need extensive medical care at home, the literature evaluating pediatric home healthcare has not been well summarized. Our objective was to systematically review the evidence-base of pediatric home healthcare to understand what is currently know about access and quality of home healthcare for children. Pubmed, Ovid Medline, Embase, CINAHL, Cochrane Library, Proquest Dissertations and Theses Global were searched for studies in the United States, United Kingdom, Canada, and Australia English publications (1980-2020) regarding children (≤18 years) using shift-based home healthcare services. Blinded independent review was conducted followed by extraction of study characteristics including how each study examined access and/or quality, which was categorized using the National Academy of Medicine quality dimensions. Of 9533 abstracts, 101 were included. Most were US (82%) and regional (72%) studies. Half (54%) focused on home nursing followed by home services generally (43%). The majority (77%) evaluated access and patient-family centeredness (62%); their results identified consistent limitations in access and quality resulting in negative impacts on patients and families. Less than 20% of publications addressed safety, effectiveness or equity. Bias scoring found that quantitative studies were universally weak, but qualitative studies were mostly moderate or strong. Results are limited by design heterogeneity and exclusion of training research. While research in pediatric home healthcare has increased, studies remain observational and rarely evaluate quality in reproducible ways. More rigorous measures and interventional research are needed to improve this healthcare sector for children.

PediHome: Development of a Family-Reported Measure of Pediatric Home Healthcare Quality.

No validated tools exist to measure pediatric home healthcare quality. The objective of this work was to develop a family-reported survey (PediHome) to measure the quality of home healthcare for children with medical complexity (CMC). A national multidisciplinary expert panel (N=19) was convened to develop survey content domains. Panelist were joined by 3 additional experts to rank candidate survey items for importance and evaluate relevance and structure. Cognitive interviews were conducted with English-speaking (n=12) and Spanish-speaking (n=4) family caregivers of CMC to revise problematic items and clarify response options. A cross-sectional survey was then fielded (6/1/20-10/31/20) to parents whose children receive healthcare at 2 regional academic medical centers. The final measure included N=28 total items with 4 items quantifying access, 1 evaluating overall quality rating, and 21 items assessing provider tasks (11 home nursing only, 2 certified nursing assistant/home health aide only, and 1 dual). Out of 312 caregivers of CMC, 142 (46%) responded and one-half (n=68, 48%) reported a child receiving home nursing. They received a weekly median of 58.4% (IQR ±31.2%) of approved nursing hours with 55% reporting a missed nursing shift within the last month. Median overall quality was 75-9 (0-10 scale) and median scores on specific quality items ranged from 31-4 to 43-4 (0-4 scale). PediHome is a new content-valid family-reported measure of home healthcare quality for CMC that is useful for evaluating healthcare quality across several domains. Future work will involve assessing PediHome's construct and predictive validity.

Home Health Care Utilization in Children With Medicaid.

Although many children with medical complexity (CMC) use home health care (HHC), little is known about all pediatric HHC utilizers. Our objective was to assess characteristics of pediatric HHC recipients, providers, and payments. We conducted a retrospective analysis of 5 209 525 children age 0-to-17 years enrolled Medicaid in the 2016 IBM Watson MarketScan Medicaid Database. HHC utilizers had ≥ 1 HHC claim. Healthcare Common Procedure Coding System (HCPCS) and Current Procedural Terminology (CPT) codes were reviewed to codify provider types when possible: registered nurse (RN), licensed practical nurse (LPN), home health aide (HHA), certified nursing assistant (CNA), or companion/personal attendant. Enrollee clinical characteristics, HHC provider type, and payments were assessed. Chronic conditions were evaluated with Agency for Healthcare Research and Quality's Chronic Condition Indicators and Feudtner's Complex Chronic Conditions. Of the 0.8% of children who used HHC, 43.8% were age <1 year, 25% had no chronic condition, 38.6% had a noncomplex chronic condition, 21.5% had a complex chronic condition without technology assistance, and 15.5% had technology assistance (eg, tracheostomy). HHC for children with technology assistance accounted for 72.6% of all HHC spending. Forty-five percent of HHC utilizers received RN/LPN-level care, 7.9% companion/personal attendant care, 5.9% HHA/CNA-level care, and 36% received care from an unspecified provider. For children with technology assistance, the majority (77.2%) received RN/LPN care, 17.5% companion/personal assistant care, and 13.8% HHA/CNA care. Children using HHC are a heterogeneous population who receive it from a variety of providers. Future investigations should explore the role of nonnurse caregivers, particularly with CMC.

High-Value Pediatric Home Health Care for Children With Medical Complexity.

Retchin, Sheldon M. MD, MSPH1; Rubio, Elizabeth RN2; Dombi, William A. JD3 Author Information

Left behind again: Rural home health services in a Medicaid pediatric accountable care organization.

PurposeTo contrast trends in rural and urban pediatric home health care use among Medicaid enrollees.MethodsMedicaid administrative claims data were used to assess differences in home health care use for child members in a large pediatric accountable care organization (ACO) in Ohio. Descriptive statistics assessed rural and urban differences in health care use over a 10‐year period between 2010 and 2019.FindingsPediatric home health care use increased markedly in the low‐income (CFC) and disabled (ABD) Medicaid categories. Over the past 10 years, CFC‐enrolled children from urban communities have seen more home health visits, fewer emergency department (ED) visits, and more well child visits compared to rural CFC‐enrolled children. Children enrolled due to disabilities in urban communities have also seen more home health visit use but fewer preventive care visits than their rural counterparts.ConclusionsWithin a pediatric ACO, rural home health care use has remained relatively stagnant over a 10‐year period, a stark contrast to increases in home health care use among comparable urban populations. There are likely multiple explanations for these differences, including overuse in urban communities, lack of access in rural communities, and changes to home health reimbursement. More can be done to improve rural home health access. Such improvement will likely necessitate large‐scale changes to home health care delivery, workforce, and financing. Improvements should be evaluated for return‐on‐investment not only in terms of direct costs, that is, reduced inpatient or ED costs, but also in terms of patient and family quality‐of‐life or key indicators of child well‐being such as educational attainment.

Paying for Pediatric Home Health Care: How Families of Children With Medical Complexity Navigate Gaps in Coverage.

Limited private and public financing of home health care for children with medical complexity can have harmful and costly consequences. Little is known of how parents and professionals in the United States navigate coverage for these services or how payer restrictions are shaping service quality. Qualitative interviews were conducted with families and professionals (eg, prescribers, providers, administrators of pediatric home health care [PHHC]) caring for children with medical complexity. Interview transcripts were analyzed using inductive thematic analysis. In total, 47 families and 45 professionals from across 31 states and the District of Columbia had experiences with the full range of PHHC services. Participants detailed the need to patch together multiple insurances and payment programs to cover a child's home health needs. They described nontransparent eligibility determinations that do not reflect the diagnostic uncertainty and static functional status that is common for many children. Coverage denials are common, leaving gaps in care that can potentiate downstream cost escalation. Evidence-based health care reform must ensure that children get the PHHC needed to maintain function and reduce the need for hospital-based services. Recommendations are offered to improve PHHC financing and care for the most medically vulnerable children and their families.

Acute Pediatric Home Hospital Care

Pediatric inpatient hospitalization can be lifesaving; yet it also can be costly and fraught with nosocomial risks. As of 2014, health care–related injury, morbidity, disability, or death occurs to 1 in 50 hospitalized children in the United States.1 Some patients are admitted for common illnesses, yet their stay is prolonged by hospital-acquired infection, procedure-related complications, or other detrimental sequelae. As US hospital inpatient and observation units overflow with admissions, a new paradigm is needed to safely transition select lower-acuity cases to the patient’s home. Pediatric home health care in the United States now primarily serves patients with chronic medical needs and those transitioning from hospital to home. Yet a new model can emerge as technology advances whereby children with certain acute illnesses are “admitted home” from the emergency department or outpatient center, with daily direct visits by mobile hospitalists and nurses and telemedicine monitoring as needed. Hospital-comparable services at home could include supplemental oxygen, intravenous fluids or medications, nebulized medications, and select laboratory tests. Pilot programs can target uncomplicated cases of bronchiolitis, wheezing, pneumonia, dehydration, and cellulitis that otherwise would require observation or lower-acuity inpatient care. These 5 diagnoses alone constituted 20% of the ∼2 million US pediatric inpatient hospitalizations in 2012.2 If one-fourth of this cohort met “home hospital” inclusion criteria, 5% of pediatric hospitalizations, or 100 000 children nationwide, could benefit from … Address correspondence to Julia Pian, Harvard Medical School, Harvard University, 25 Shattuck St, Boston, MA 02115. E-mail: julia_pian{at}hms.harvard.edu

Caregiver and Provider Experiences of Home Healthcare Quality for Children With Medical Complexity.

Despite a growing population of children with medical complexity, little is known about the current quality of pediatric home healthcare. The objective of this study was to characterize the quality of pediatric home healthcare experienced by primary family caregivers (parents) and healthcare providers of children with medical complexity. Semistructured, in-depth key informant interviews of 20 caregivers and 20 providers were conducted and analyzed for factors affecting home healthcare quality using the Institute of Medicine's quality framework (effective, safe, patient-centered, timely, equitable, and efficient). System complexity, insurance denials, and workforce shortages affected patients' ability to establish and maintain access to home healthcare leading to hospital discharge delays and negative family impacts. When home healthcare was accessible, respondents experienced it as effective in improving patient and family daily life and minimizing use of emergency and hospital services. However, respondents identified a need for more pediatric-specific home healthcare training and increased efficiencies in care plan communication. Overall, home healthcare was not perceived as timely or equitable due to access barriers. This study provides a new conceptual framework representing the relationship between home healthcare quality and outcomes for children with medical complexity for future evaluations of quality improvement, research, and policy initiatives.

Lived Experience of Pediatric Home Health Care Among Families of Children With Medical Complexity.

Background. For children with complex medical conditions, pediatric home health care is a chronic need. It is a clinical service delivered entirely outside of clinical settings, granting families unparalleled expertise regarding service quality. Methods. Telephone interviews with parents whose children have extensive experiences with home health care. Results: Five themes emerged: (1) benefits of home health care include child survival and family stability; (2) family life is inextricable from home health care schedules, staffing, and services; (3) home health care gaps threaten family physical, mental, and financial well-being; (4) Out-of-pocket costs are common; and (5) families must fight for services as their children's medical conditions evolve. Conclusions. Families understand better than prescribers, providers, or policy makers what is working, and what is not, with home health care. Family expertise should be the foundation for training other families, clinicians, and home health care agencies, and should be a central component of policy and advocacy in this area.

The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients.

Children with medical complexity (CMC) often require pediatric home health care (PHHC) to meet their daily intensive care needs. Pediatricians are central to planning, implementing, and maintaining quality PHHC for CMC, yet a comprehensive road map for this process is lacking. With this national study, we aim to fill that gap. Semistructured interviews were conducted with parents and professionals from the 10 US Health Resources and Services Administration regions. Parents were recruited via advocacy groups for families of CMC; professionals with experience with PHHC for CMC were identified by using purposive and snowball sampling. Interview transcripts were qualitatively analyzed for themes. A comprehensive process of prescribing, providing, and maintaining PHHC requires 5 steps: identifying needs, investigating options, developing plans of care, initiating services, and navigating evolving needs. The success of the PHHC process is built on knowledge, anticipation, and early identification of needs; communication; care-coordination infrastructure; skilled home health providers; and the parent-provider relationship. Many CMC require PHHC to live safely outside of the hospital. Although the PHHC process involves multiple steps and participants, pediatricians' understanding of the process is the foundation of PHHC success. Fostering interagency relationships, increasing longitudinal care coordination, and investing in the PHHC infrastructure may reduce the burden placed on families and CMC as they navigate the complex process of PHHC.

Financing of Pediatric Home Health Care.

Pediatric home health care is an effective and holistic venue of treatment of children with medical complexity or developmental disabilities who otherwise may experience frequent and/or prolonged hospitalizations or who may enter chronic institutional care. Demand for pediatric home health care is increasing while the provider base is eroding, primarily because of inadequate payment or restrictions on benefits. As a result, home care responsibilities assumed by family caregivers have increased and imposed financial, physical, and psychological burdens on the family. The Patient Protection and Affordable Care Act set forth 10 mandated essential health benefits. Home care should be considered as an integral component of the habilitative and rehabilitative services and devices benefit, even though it is not explicitly recognized as a specific category of service. Pediatric-specific home health care services should be defined clearly as components of pediatric services, the 10th essential benefit, and recognized by all payers. Payments for home health care services should be sufficient to maintain an adequate provider work force with the pediatric-specific expertise and skills to care for children with medical complexity or developmental disability. Furthermore, coordination of care among various providers and the necessary direct patient care from which these care coordination plans are developed should be required and enabled by adequate payment. The American Academy of Pediatrics advocates for high-quality care by calling for development of pediatric-specific home health regulations and the licensure and certification of pediatric home health providers.

Notes from the Field: Health Care-Associated Hepatitis A Outbreak - Texas, 2015.

On August 27-28, 2015, the Texas Department of State Health Services received calls from Fort Bend County and Harris County health departments requesting postexposure prophylaxis (PEP) recommendations for contacts of two nurses (patients A and B) with confirmed hepatitis A virus (HAV) infection. Both nurses had symptom onset during August 15-19 and worked for the same pediatric home health care agency in another jurisdiction. Because of the proximity of the onset dates, a common source exposure was suspected. The state and local health departments began an investigation to identify potentially exposed patients, their families, and other agency personnel; offer PEP; and identify the source of exposure.

P116 – 2582: Palliative care and paediatric neurology

Objective The high frequency of neurological processes of uncertain or incurable prognosis demands an active and global attention of the patient and his family aiming to improve the attention and the quality of life of these patients. The palliative care have to be integrated into the neurology practice. We analyzed the characteristics of pediatric neurological patients admitted to the Pediatric Home Health Care Unit of a major hospital with neurological diseases including epidemiological, diagnostic, developmental and survival data. Methods A retrospective, descriptive study of patients admitted to Home Health Care with neurological diseases for palliative care for 5 years. Results During past 5 years 52 patients were admitted with neurological disorders (10.5% of total). The mean age on admittance was 34.5 months (range 0 to 152 months). The male/female ratio was 24/28. The most frequent disorders were: 10 severe cerebral palsy with difficult to control symptoms, 8 brain tumors, 5 metabolic disorders, 6 central nervous system malformations, 4 hypoxic ischemic encephalopathies, 4 patients with sequels of extremely premature birth, 3 spinal muscular atrophies and 2 chromosomal abnormalities. Provenance was mostly hospital wards (54%), and oncology (15%) and neurology (12%) consultations. In addition to general palliative care, 41 patients required enteral nutrition, 26 requiered oxygen and 7 NIV in their homes. During follow-up, there was at least one hospital admission in 18 patients. The mean stay in the unit was 8.6 months. Of the patients admitted, 13 died, five of them at home. Conclusion Diverse neurological diseases are characterized by a lack of response to the treatment, a progressive evolution of the disease, and in certain cases, a fatal prognosis in a relatively short term. We propose, in these patients, comprehensive care at home to prevent unnecessary hospital admissions, and when the time comes help them at the end of their days

Transitioning HIV-Infected Youth Into Adult Health Care

With advances in antiretroviral therapy, most HIV-infected children survive into adulthood. Optimal health care for these youth includes a formal plan for the transition of care from primary and/or subspecialty pediatric/adolescent/family medicine health care providers (medical home) to adult health care provider(s). Successful transition involves the early engagement and participation of the youth and his or her family with the pediatric medical home and adult health care teams in developing a formal plan. Referring providers should have a written policy for the transfer of HIV-infected youth to adult care, which will guide in the development of an individualized plan for each youth. The plan should be introduced to the youth in early adolescence and modified as the youth approaches transition. Assessment of developmental milestones is important to define the readiness of the youth in assuming responsibility for his or her own care before initiating the transfer. Communication among all providers is essential and should include both personal contact and a written medical summary. Progress toward the transition should be tracked and,once completed, should be documented and assessed.

Pediatric News

Pediatric News

Incidence Rates of Healthcare-Associated Infection in a Pediatric Home Healthcare Service

We describe the incidence rates of home healthcare-associated infections (HHAIs) in a pediatric home healthcare service (PHHCS). The overall incidence density of HHAIs was 11.1 infections per 1,000 patient-days. Average incidence density of ventilator-associated pneumonia (VAP) was 6.8 per 1,000 ventilator-days. Strategies for control of VAP should be prioritized in PHHCSs.

Health care–associated infection and hospital readmission in a home care service for children

The number of children in home health care services is increasing, and there is a need for infection control regulation in this environment. We describe the main causes of infection and hospitalization in children assisted by a pediatric home health care service in Rio de Janeiro, Brazil.

The Role of the Pediatric Home Healthcare Nurse

The acuity and number of children with life-threatening, life-limiting, and chronic conditions has increased dramatically over the past decade. The pediatric home care nurse needs a special body of knowledge and repertoire of tools to accurately assess, intervene, manage, evaluate, and provide resources to this most vulnerable population. Inherent in caring for these children is the need to support the family, nurturing the parents who care for chronically ill children at home.

Guidelines for pediatric home health care

Guidelines for pediatric home health care

Guidelines for Pediatric Home Health Care

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