METHODS: Qualitative study.
METHODS: 120 children with CKD (aged 8-21 years), 250 parents, and 445 health professionals from 53 countries participated in 16 focus groups, two consensus workshops, and a Delphi survey.
METHODS: A thematic analysis of all qualitative data concerning growth from the Standardized Outcomes in Nephrology - Children and Adolescents (SONG-Kids) initiative.
RESULTS: We identified five themes: diminishing psychological wellbeing (compared to and judged by peers, tired of explaining to others, damaging self-esteem), constrained life participation and enjoyment (deprived of normal school experiences, excluded from sports or competing at a disadvantage, impaired quality of life in adulthood); grappling with impacts of symptoms and treatment (difficulty understanding short stature and accessing help, lack of appetite, uncertainty regarding bone pains, medication side effects, burden of growth hormone treatment); facilitating timely interventions and optimizing outcomes (early indicator of disease, assessing management, maximizing transplant outcomes, minimizing morbidity); and keeping growth and health priorities in perspective (quality of life and survival of utmost priority, achieved adequate height).
CONCLUSIONS: Only English-speaking participants were included.
CONCLUSIONS: Impaired growth may diminish psychological wellbeing, self-esteem, and participation in daily activities for children with CKD. Balancing different treatments that can affect growth complicates decision-making. These findings may inform the psychosocial support needed by children with CKD and their caregivers to address concerns about growth.
方法:定性研究。
方法:120名CKD儿童(8-21岁),250父母来自53个国家的445名卫生专业人员参加了16个焦点小组,两个共识研讨会,和德尔福调查。
方法:对肾脏病学标准化结果-儿童和青少年(SONG-Kids)倡议中有关生长的所有定性数据进行主题分析。
结果:我们确定了五个主题:心理健康下降(与同龄人相比并由同龄人判断,厌倦了向别人解释,损害自尊),受限的生活参与和享受(被剥夺了正常的学校经历,被排除在运动之外或处于劣势竞争,成年期生活质量受损);努力应对症状和治疗的影响(难以理解身材矮小和获得帮助,缺乏食欲,关于骨骼疼痛的不确定性,药物副作用,生长激素治疗的负担);促进及时干预和优化结果(疾病的早期指标,评估管理,最大化移植结果,将发病率降至最低);并保持增长和健康优先事项(生活质量和生存是最优先的,达到足够的高度)。
结论:仅包括讲英语的参与者。
结论:生长障碍可能会降低心理健康,自尊,并参与CKD儿童的日常活动。平衡可能影响生长的不同治疗方法会使决策复杂化。这些发现可能为CKD儿童及其照顾者提供所需的心理社会支持,以解决对成长的担忧。