Effect of a comprehensive clinical care program on disease course in severely ill children with sickle cell anemia in a sub-Saharan African setting

Rahimy, Mohamed Chérif; Gangbo, Annick; Ahouignan, Gilbert; Adjou, Roselyn; Deguenon, Chantal; Goussanou, Stephanie; Alihonou, E

doi:10.1182/blood-2002-05-1453

Cited by 96 publications

(87 citation statements)

References 20 publications

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“…Existing care models include medical homes, comanagement, and hospital-based and hybrid models that focus on care coordination. Reports from several mainly uncontrolled studies have described the medical home, [39][40][41][42] hospital-based programs, 10,24,43 hospitalto-medical home transitions, 22 home care, [44][45][46][47][48] tele-home care, 59 and disease-specific specialty clinics (eg, cystic fibrosis, 50 epilepsy, 51 and sickle cell disease 52 ). Adult providers are also developing adult complex care models.…”

Section: Clinical Agendamentioning

confidence: 99%

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

et al. 2011

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Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system. Pediatrics 2011;127:529-538Since 1998, the Maternal and Child Health Bureau has defined children with special health care needs (CSHCN) as those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally. 1 An extensive process informed the development of an intentionally broad and inclusive CSHCN definition for the definition to be meaningful for broad program planning and development. Although 13% to 18% of children are considered to have special needs (excluding those who are "at risk" for special needs), 2 there is considerable variation in medical complexity, functional limitations, and resource need among CSHCN. 3,4 One important subgroup is the children who are the most medically fragile and have the most intensive health care needs. Examples vary and include children who have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, or patients with cancer/cancer survivors with ongoing disability in multiple areas. Terms traditionally used to describe this subgroup include a combination of children with 1 or more of the following terms: complex, chronic, medical, conditions, and/or needs (eg, complex chronic conditions [CCCs], 5 complex medical needs, 6 complex medical conditions, 7 and complex health conditions 8 ), as well as medically complex children. 9,10 In this article, we use the term "children with medical complexity" (CMC). The rationales are that it uses "person-first" terminology and refers to the extra time, expertise, and resources necessary to achieve optimal health outcomes for these children. AUTHORS:

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Section: Clinical Agendamentioning

confidence: 99%

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

et al. 2011

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“…Evaluation of a comprehensive clinical care programme in a sub-Saharan Africa setting produced encouraging results and showed that improved growth and reduced disease severity can be attained. 162 There are good opportunities for such programmes with the introduction of neonatal screening, the identification of children with SCD at birth and early interventions using essential health packages.…”

Section: Future Perspectivesmentioning

confidence: 99%

Growth and nutritional status of children with homozygous sickle cell disease

Al-Saqladi

Cipolotti

Fijnvandraat

et al. 2008

Annals of Tropical Paediatrics

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Background: Poor growth and under-nutrition are common in children with sickle cell disease (SCD). This review summarises evidence of nutritional status in children with SCD in relation to anthropometric status, disease severity, body composition, energy metabolism, micronutrient deficiency and endocrine dysfunction. Methods: A literature search was conducted on the Medline/PUBMED, SCOPUS, SciELO and LILACS databases to July 2007 using the keywords sickle cell combined with nutrition, anthropometry, growth, height and weight, body mass index, and specific named micronutrients. Results: Forty-six studies (26 cross-sectional and 20 longitudinal) were included in the final anthropometric analysis. Fourteen of the longitudinal studies were conducted in North America, the Caribbean or Europe, representing 78.8% (2086/2645) of patients. Most studies were observational with wide variations in sample size and selection of reference growth data, which limited comparability. There was a paucity of studies from Africa and the Arabian Peninsula, highlighting a large knowledge gap for low-resource settings. There was a consistent pattern of growth failure among affected children from all geographic areas, with good evidence linking growth failure to endocrine dysfunction, metabolic derangement and specific nutrient deficiencies. Conclusions: The monitoring of growth and nutritional status in children with SCD is an essential requirement for comprehensive care, facilitating early diagnosis of growth failure and nutritional intervention. Randomised controlled trials are necessary to assess the potential benefits of nutritional interventions in relation to growth, nutritional status and the pathophysiology of the disease.

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“…There are several impressive examples, particularly the pioneering work by groups in Jamaica, Ghana and the Republic of Benin, which show that, it can, although some very specialised services are clearly not yet possible. 41,50 The success of these services depends upon many factors, including clinical leadership from hematologists prepared to work in these local centres of need; financial support (usually from a combination of governmental and non-governmental organizations, including private companies); willingness to listen to and understand the local patterns of disease and care provision; and the establishment of networks 51 linking expertise in Europe and the United States with centres in Africa, India, South America and the Middle East.…”

Section: Hospital-based Services For Patients With Sickle Cell Diseasementioning

confidence: 99%

Sickle cell disease as a paradigm of immigration hematology: new challenges for hematologists in Europe

Roberts¹,

Montalembert²

2007

Haematologica

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Effect of a comprehensive clinical care program on disease course in severely ill children with sickle cell anemia in a sub-Saharan African setting

Cited by 96 publications

References 20 publications

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

Growth and nutritional status of children with homozygous sickle cell disease

Sickle cell disease as a paradigm of immigration hematology: new challenges for hematologists in Europe

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