ジャマル・A・オメル
科学的複雑性を持つ子ども (CMC) は、科学的脆弱性と幅広いケアニーズを抱えており、既存の医療モデルでは対応が難しい場合があります。CMC は、先天性または後天性の多臓器疾患、顕著な機能障害を伴う重度の神経学的状態、および/または日常生活の活動に対するテクノロジー依存を抱えている場合もあります。これらの子どもは健康状態が悪化しやすく、家族と医療機器の両方に大きな社会経済的負担を強いるにもかかわらず、彼らのハードケアに対処し、家族と医療機器の負担を軽減し、患者の生活の質または医療サービスに関する全体的な研究を向上させることに専念する、適切に設計された臨床プロジェクト、サービス、および研究活動はほとんどありません。
医療上の複雑な問題を抱える子ども (CMC) とその家族のニーズは、最近、医療提供者、政策立案者、支払者、家族の間で関心が高まり、議論されるテーマになっています。CMC を抱える家族は、しばしば、調整が不十分で一貫性がなく、扱いにくい複雑なシステムに直面しています。家族の視点から見たこの記事には、CMC の定義、特別な医療ニーズを持つ子どもや若者 (CYSHCN) および CMC に支援を提供する規則とプログラムのリスト、優れた低コストの医療へのアクセスに関連する費用と困難な状況、子どもを世話し、成人医療への移行を支援する家族に対する支援とサービスを改善する可能性についての議論が含まれています。
The burden of a couple of persistent illnesses is putting stress on any fitness care machine. As a small however great populace with large necessities, these patients gift a undertaking to healthcare providers who're predicted to offer holistic care and control complex problems regularly with a paucity of studies, offerings, and supports. Patients with medical complexity and their families need extra sight and assist; however, the fitness care system, community and social offerings do no longer constantly recognize their calls for help or help. Our guidelines are made for fitness care structures and issuer to initiate a precious provider to such organization of population to make certain high skilled lifestyles. Our comprehensive care application with its research initiative for this valued population targets to identify and understand the modern-day reputation of complicated pediatric care in Saudi Arabia inclusive of the prevalence of kids with scientific complexity and burden on our health device in addition to their households and to perform a properly-dependent model of care with right offerings as a way to allow better expertise of this population and inventive planning of their good sized and complicated care inside our fitness device.
CMC are a subset of CYSHCN, a population defined as “those who have or are at increased hazard for a continual bodily, developmental, behavioral, or emotional condition and who additionally require health and related services of a type or amount beyond that required through youngsters commonly.” There are a ramification of phrases and definitions used to explain CMC; for the purposes of this text, we use the following: CMC are folks that are “clinically diagnosed via at least 1 continual circumstance resulting in high circle of relatives-diagnosed carrier need, scientific equipment addressing purposeful problems, more than one subspecialist involvement, and extended health service use.” Examples of CMC consist of those with cystic fibrosis, severe congenital coronary heart defects, or complicated metabolic problems.
Meeting the person and collective desires of CMC (who, by means of using the above definition, are predicted to constitute 3.2% of CYSHCN and ∼0.4% of all youngsters within the United States) need to be a shared priority of fitness care shipping structures, payers, the health policy research community, and society as a whole. The revel in of CMC in their houses, faculties, and groups is unique, and each family sees their toddler with scientific complexity as a man or woman first and major, that's why the authors promote and use person-first language. Families need vendors, payers, and policy makers to remember the fact that every infant must always be visible as a man or woman person first and predominant.
CMC の数は増加しており、かつては普遍的に致命的であった多くの生命を脅かす病気や先天異常の治療法や治療により、治療を導く臨床的証拠や最先端の医療およびネットワーク システムの能力を超えて生存する新しい世代の子供たちが生まれています。その数は依然として少ないものの、ネットワーク小児ケア システム、学校、教会、大家族には、CMC が含まれている可能性があります。