Health Challenges for Adolescents With Chronic Diseases Attending Assiut University Children Hospital and Sidi Galal Health Insurance Clinic
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 400
- 主要终点
- Percentage of adolescents with chronic conditions showing good adherence to treatment as measured by Medication Adherence Report Scale (MARS)
研究概览
简要总结
The World Health Organization (WHO) defines adolescents as those people between 10 and 19 years of age. Adolescence is a critical developmental stage especially in the context of living with a chronic disease (CD), a chronic disease can be defined as "physiological, behavioral or cognitive disorder that has lasted for one year and produces one or more types of consequences: functional constraints, dependency on compensatory assistance for functioning, or increased need of service compared with age-mates".
The burden of chronic conditions in adolescence is increasing as larger numbers of chronically ill children survive beyond the age of 10. Over 85% of children with congenital or chronic conditions now survive into adolescence, and conditions once seen only in young children are now seen beyond childhood and adolescence.
详细描述
Adolescents live a complex period of their lives, where several unique transformations take place (urge for personal identity, autonomy and independence), having a chronic condition in this period can represent an additional burden for those natural developmental challenges.
In fact, The developmental processes involved in adolescence have a complex and bi-directional interaction with chronic illness such that a chronic disease can alter development and vice versa. For example, some chronic diseases, such as cystic fibrosis or diabetes mellitus, can impair pubertal development. On the other hand, puberty itself can affect the course of a chronic disease. For example, normal puberty is associated with insulin resistance; therefore, blood glucose control can be difficult during pubertal years in teens with diabetes.
Unlike adults, adolescents with chronic disease find more difficulties facing challenges as adherence to treatment, impaired quality of life, disease acceptance and eventually transition to adult health care settings.
Adherence to treatment:
Adherence to treatment is defined as "the extent to which a person's behavior, in terms of taking medications, following diets, or executing lifestyle changes, coincides with medical or health advice".
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 10 Years 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Any adolescent aged 10-18 years having chronic disease for more than one year with regular medications prescriptions
排除标准
- 未提供
结局指标
主要结局
Percentage of adolescents with chronic conditions showing good adherence to treatment as measured by Medication Adherence Report Scale (MARS)
时间窗: 6 months
3- Assessment of adherence to treatment by using Arabic validated version of Medication Adherence Report Scale (MARS): 5- items rated on a 5-point scale. The cut point used for the MARS score will be ≥80% (i.e. if the score ¬≥ 20 the adolescent will be considered adherent)
percentage of adolescents with chronic disease showing high acceptance to thier chronic disease measured by Acceptance to Illness Scale (AIS)
时间窗: 6 months
5- Disease acceptance will be evaluated using: Arabic validated version of Acceptance to Illness Scale (AIS) (42) which consists of 8- items rated on a 5-point scale, where (1 means strongly agree; 2-agree; 3-undecided; 4-disagree; 5-strongly disagree) . The total score of the scale ranges from 8 to 40; the higher score, the better acceptance of illness.
percentage of adolescents with chronic disease showing high quality of life measured by Arabic version of the Pediatric Qualify of Life Inventory Generic Core Scale
时间窗: 6 months
6- Assessment of health-related quality of life (HRQoL) using the Arabic version of the Pediatric Qualify of Life Inventory Generic Core Scale (PedsQL) 4.0 GCS (43): It is a 23-item which includes: 1. Physical Functioning (8 items). 2. Emotional Functioning (5 items). 3. Social Functioning (5 items). 4. School Functioning (5 items). The response options of the PedsQL (4.0) require children to rate each item using a 5-point rating scale ranging from 'never' to 'almost always' as follow: * 0 if it is never a problem. * 1 if it is almost never a problem. * 2 if it is sometimes a problem. * 3 if it is often a problem. * 4 if it is almost always a problem Each item was then reverse scored and linearly transformed to a 0-100 scale as follows: 0=100, 1=75, 2=50, 3=25, 4=0, so that higher scores indicate a better HRQoL
Percentage of adolescents with chronic disease showing high readiness for transition to adult health care setting measured by The Transition Readiness Assessment Questionnaire (TRAQ)
时间窗: 6 months
7- Assessment of readiness for transition to adult health care settings using The Transition Readiness Assessment Questionnaire (TRAQ), which is a validated 20-item, 5-domain (appointment keeping- tracking health issues- managing medications-taking with providers-managing daily activities) patient-reported assessment of health and health care self-management skills that can be used in preparation for transition to adult care
次要结局
未报告次要终点
研究者
Mariam Gamal
Principle investigator
Assiut University