Lifespan care in SCD: Whom to transition, the patients or the health care system?

Minniti, Caterina P.; Vichinsky, Elliott

doi:10.1002/ajh.24685

Cited by 9 publications

(7 citation statements)

References 19 publications

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“…11,22 Our study further supports the need for increased focus on acute care utilization in the 18-to-45-year-old age group and considerations for improved care transition interventions. 71 Interventions that improve HU adherence are of particular importance in reducing acute care utilization. Importantly, we found comanagement is associated with HU adherence.…”

Section: Resultsmentioning

confidence: 99%

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use

et al. 2020

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Background: Sickle-cell disease (SCD) causes significant morbidity, premature mortality, and high disease burden, resulting in frequent health care use. Comanagement may improve utilization and patient adherence with treatments such as Hydroxyurea. The purpose of this study was to describe acute-care utilization in Medicaid-enrolled patients with SCD, patient factors associated with comanagement, and adherence to Hydroxyurea.Methods: Data from 2790 patients diagnosed with SCD, age 1 to 65؉ years, enrolled at least 1 month in North Carolina Medicaid between March 2016 and February 2017, were analyzed. Outpatient visits were categorized as primary care, hematologist, and nonhematologist specialist. Nurse practitioners or physician assistants with unidentified specialty type or family practice were categorized separately. Comanagement was defined as a minimum of 1 primary care and 1 hematologist visit/patient during the study period.Results: There were notable age-related differences in utilization of health care services. Only 34.82% of the sample was comanaged. Comanagement was higher in the 1-to-9-year-old (44.88%) and 10-to-17-year-old groups (39.22%) versus the 31-to-45-year-old (30.26%) and 65؉-year-old (18.75%) age groups. Age had the greatest influence (AUC ‫؍‬ 0.599) on whether or not a patient was comanaged. Only a third of the sample (32.24%) had at least 1 Hydroxyurea (HU) prescription. Age was the most predictive factor of good HUadherence (AUC ‫؍‬ 0.6503). Prediction by comanagement was minimal with an AUC ‫؍‬ 0.5615.Conclusion : Comanagement was a factor in predicting HUadherence, but further studies are needed to identify the frequency and components of comanagement needed to increase adherence and reduce acute care utilization. (J Am Board Fam Med 2020;33:91-105.)Sickle-cell disease (SCD) is a genetic disorder and the most common rare blood disease in the United States. 1 Patients suffer from complications, includ-ing but not limited to stroke, acute chest syndrome, and severe painful crisis that contributes to morbidity and premature mortality. Individuals also suffer from significant disease burden, often resulting in a high number of hospitalizations, readmissions, emergency department (ED) visits, and other associated costs to the health care system. In 2006 people with SCD had an estimated 232,382 ED visits, 68,410 hospitalizations from the ED, accounting for an estimated $2.4 billion dollars. 2 In 2010, SCD was associated with the highest 30-day readmission rate (31.9%) among all diagnoses excluding cancer and cancer-related conditions. 3 Other national data representing about 1 ⁄3 of the SCD population found a similar 30-day readmis-This article was externally peer reviewed.

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Section: Resultsmentioning

confidence: 99%

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use

et al. 2020

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“…The medical community has recognised that specialised comprehensive care centres can decrease the morbidity and mortality associated with certain chronic diseases. Reduced hospitalisation, morbidity, and mortality rates have followed with commissioning of specialised centres with multidisciplinary teams for haemophilia and cystic fibrosis [76,77]. Such approaches with holistic management have also been advocated in complex genetic syndromes such as Tuberous Sclerosis Complex (TSC) [78], where, for example, consensus recommendations on surveillance and management are relevant to the entire lifespan [79].…”

Section: Lifespan Clinics As An Alternative Healthcare Model -Examples From Other Diseasesmentioning

confidence: 99%

Rare and Complex Epilepsies from Childhood to Adulthood: Requirements for Separate Management or Scope for a Lifespan Holistic Approach?

Balestrini

Guerrini

Sisodiya

2021

Curr Neurol Neurosci Rep

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Purpose In this descriptive review, we describe current models of transition in rare and complex epilepsy syndromes and propose alternative approaches for more holistic management based on disease biology. Recent Findings Previously published guidance and recommendations on transition strategies in individuals with epilepsy have not been systematically and uniformly applied. There is significant heterogeneity in models of transition/transfer of care across countries and even within the same country. Summary We provide examples of the most severe epilepsy and related syndromes and emphasise the limited data on their outcome in adulthood. Rare and complex epilepsy syndromes have unique presentations and require high levels of expertise and multidisciplinary approach. Lifespan clinics, with no transition, but instead continuity of care from childhood to adulthood with highly specialised input from healthcare providers, may represent an alternative effective approach. Effectiveness should be measured by evaluation of quality of life for both patients and their families/caregivers.

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“…In high-income countries, comprehensive care programmes have increased the life expectancy of SCD patients, with more than 99% of patients now reaching adulthood (Gardner et al, 2016 ). Creating a model of lifespan care, which would allow a transition from an acute disease to a chronic condition through preventive measures, is getting more and more attention for determining health outcomes (Minniti & Vichinsky, 2017 ).…”

Section: Introductionmentioning

confidence: 99%

Psychometric characteristics of the Revised Illness Perception Questionnaire (IPQ-R) in adults with sickle cell disease

Doglioni

D’Orengiani

Galactéros

et al. 2021

Health Psychology and Behavioral Medicine

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Objective Sickle cell disease (SCD) is the most frequent monogenic disease worldwide. Psychological and behavioural factors are often reported as playing a significant role in predicting SCD health outcomes. When focusing on adaptation to a specific health condition and its treatment, the Common Sense Model of Health and Illness (CSM) has proven to be of heuristic value. In other health conditions, illness outcomes are directly influenced by illness perception. Therefore, the aim of this study is to explore the psychometric proprieties of the Revised Illness Perception Questionnaire (IPQ-R). Design We performed a cross-sectional assessment on 517 adult patients with sickle cell disease and collected the results of 406 IPQ-R. With these data, we verified the factor structure of the Belief scale and proposed modifications to improve its fit to the data with a confirmatory factor analysis. In addition, we explored the factorial structure of the Causal attribution scale with an exploratory factor analysis. Results The initial model showed poor fit with the data. After structural modifications, elimination of two items with a low loading (model 2), covariance added between items (model 3) and items reallocation (model 4), the last model proposed presented a correct fit with the data. Before doing this model specification, we reviewed and compiled the nine studies that explored the psychometric properties of the IPQ-R in order to highlight all the modifications made by the other authors who have adapted the IPQ-R to a specific population and to allow a comparison with our own modifications. Conclusion Considering previous findings, this research suggests further work is needed on the structure of the dimensions of the IPQ-R.

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Lifespan care in SCD: Whom to transition, the patients or the health care system?

Cited by 9 publications

References 19 publications

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use

Rare and Complex Epilepsies from Childhood to Adulthood: Requirements for Separate Management or Scope for a Lifespan Holistic Approach?

Psychometric characteristics of the Revised Illness Perception Questionnaire (IPQ-R) in adults with sickle cell disease

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