Abstract：
OBJECTIVE: Growth failure is a common problem among children with chronic kidney disease (CKD). Reduced height is associated with psychosocial burden, social stigma, and impaired quality of life. This study aimed to describe the aspects of growth impairment that are most impactful from the perspectives of children with CKD, their parents, and health professionals.
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.
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.
摘要：
目的：生长障碍是慢性肾脏病（CKD）患儿的常见问题。身高下降与心理社会负担有关，社会耻辱，生活质量受损。本研究旨在从CKD儿童的角度描述生长障碍最有影响的方面。他们的父母,和卫生专业人员。
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。
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。
