| Literature DB >> 35883943 |
Mirjam Močnik1, Sonja Golob Jančič1, Nataša Marčun Varda1,2.
Abstract
(1) Background: The transition of children with chronic kidney disease to adult care has become a well-handled issue. However, other patients with normal or mildly decreased renal function also requiring further management and transition are neglected. (2)Entities:
Keywords: adolescents; nephrology; questionnaire; transition
Year: 2022 PMID: 35883943 PMCID: PMC9317370 DOI: 10.3390/children9070959
Source DB: PubMed Journal: Children (Basel) ISSN: 2227-9067
Results of the questionnaire, presented as N of the checked answers = percent.
| Variable | Whole Group (N = 100) | Subgroup with Delayed Transition (N = 14) |
|---|---|---|
| Social status | High-school student: 55 | College student: 10 (71.4%) |
| Housing status | I live with my parents: 94 | I live with my parents: 10 (71.4%) |
| I know what disease I have | Yes: 85 | Yes: 13 (92.9%) |
| I know what are long-term | Yes: 86 | Yes: 12 (85.7%) |
| I know what medications I need | Yes: 43 | Yes: 5 (35.7%) |
| I take medications on my own, it is my obligation | Yes: 43 | Yes: 5 (35.7%) |
| I know what are the side effects of | Yes: 32 | Yes: 5 (35.7%) |
| I understand the effect of the drugs and alcohol on my health | Yes: 84 | Yes: 13 (92.9%) |
| I go alone to the doctor’s appointment | Yes: 58 | Yes: 13 (92.9%) |
| My family supports my independent care for my health | Yes: 99 | Yes: 13 (92.9%) |
| I know how my disease affects my profession choice | Yes: 67 | Yes: 9 (64.3%) |
| I know how my disease affects my physical activity | Yes: 71 | Yes: 12 (85.7%) |
| I know how my disease | Yes: 66 | Yes: 9 (64.3%) |
| I know who will continue my care in further treatment | Yes, an internist nephrologist: 43 | Yes, an internist nephrologist: 7 (50%) |
| I already have a family doctor | Yes: 55 | Yes: 12 (85.7%) |
| In your care I was | Very satisfied: 60 | Very satisfied: 12 (85.7%) |
| The amount of check-ups | Just right: 94 | Just right: 14 (100%) |
| My evaluation of the staff is, from 1 (the least) to 5 (the most) | 4,5 in average | 4,6 in average |
| In further treatment I expect | Similar care: 83 | Similar care: 12 (85.7%) |
| In further treatment, I will visit | Alone: 82 | Yes: 13 (92.9%) |
| In further treatment, I expect | Re-interpretation of my illness: 37 | Re-interpretation of my illness: 7 (50%)Regular and frequent inspections: 9 (64.3%) |
| In further treatment, I expect to be able to take care of my health on | Yes: 98 | Yes: 14 (100%) |
Presentation of literature review on transition of chronic pediatric nephrological patients from different fields of risk for chronic kidney disease (CKD) development.
| Subgroup | Year, First Author, and | Main Findings |
|---|---|---|
| Congenital anomalies of the kidney and | 2015: Timberlake et al. | Confirms the presence of a sizable population of young adult patients with chronic urologic problems and maturing care needs who continue to receive exclusively pediatric care, and are rarely engaged in preparatory discussions regarding care transition; establishment of a transition clinic to facilitate progression to adult care services at their institution |
| 2015: Szymanski et al. Current opinions regarding care of the mature pediatric urology patient [ | Appropriate long-term follow-up of patients with congenital genitourinary conditions is necessary; patients with prior complex surgical reconstruction should be followed by a urologist with specific interest, training, and experience in the area of transitional urology | |
| 2015: Lambert et al. Transitional care in pediatric urology [ | Children with posterior urethral valves, exstrophy–epispadias complex, cloaca, vesicoureteral reflux, neurogenic bladder, disorders of sex development, cancer, hypospadias, nephrolithiasis, undescended testes, varicoceles, ureteropelvic junction obstruction, solitary kidney, and upper tract anomalies all require long-term evaluation and management | |
| 2016: Bower et al. The transition of young adults with lifelong urological needs from pediatric to adult services: An international children’s continence society position statement [ | Transitioning and transfer of children with major congenital anomalies requires improved education for doctors and children’s families; early initiation of the transition process should allow the transfer to take place at appropriate times based on the child’s development, as well as environmental and financial factors | |
| 2018: Hettel et al. Lost in transition: patient-identified barriers to adult urological spina bifida care [ | Patients with congenital diseases are often lost to routine medical care in young adulthood; the decision to pursue adult urologic care is multifactorial; areas for improvement include provider communication at both the pediatric and adult level, as well as education regarding patient preferences and self-readiness | |
| 2020: Yerkes et al. Chronic kidney disease and upper tract concerns after congenital and acquired urinary tract abnormalities: considerations for transition of care in teens and young adults [ | In individuals with congenital or acquired abnormalities of the urinary tract, there is an inherent risk of CKD, with its associated morbidity and increased mortality risk; the interplay between the upper and lower urinary tract impacts CKD progression; collaborative management between urology and nephrology is highly recommended to address the unique challenges for each individual over their lifetime | |
| Glomerular | 2008: Iitaka et al. Transition of children with membranoproliferative glomerulonephritis to adolescence and adulthood [ | Membranoproliferative glomerulonephritis often continues to adulthood, and patients are usually referred to adult nephrologists; good communication between pediatric and adult nephrologists is important; more in-depth explanation and reeducation about their disease and its management are helpful when these patients reach adolescence to improve their care and help to assure compliance |
| 2014: Honda et al. The problem of transition from pediatric to adult healthcare in patients with steroid-sensitive nephrotic syndrome (SSNS): a survey of the experts [ | Importance of transition is highlighted; shifts in steroid dose during transition are a problem in Japan due to the difference in the steroid regimen between pediatric and adult patients with steroid-sensitive nephrotic syndrome | |
| Tubulopathies | 2016: Ariceta et al. A coordinated transition model for patients with cystinosis: from pediatrics to adult care [ | Model of transition as a prototype of children with rare tubulopathies |
| 2017: Raina et al. Structured transition protocol for children with cystinonsis [ | Transition has to be structured and depends on four areas of competency: recognition, insight, self-reliance, and the establishment of healthy habits (RISE) | |
| Other rare, | 2019: Kreuzer M et al. Current management of transition of young people affected by rare renal conditions in the ERKNet [ | Importance of the transition of these children with transition guidelines; differences in management in different ERKNet centers |
| 2014: Thiele et al. Transition into adulthood: tuberous sclerosis complex, Sturge-Weber syndrome, and Rasmussen encephalitis [ | In tuberous sclerosis care, issues tend to evolve from seizure control and development in childhood to renal and psychiatric disease in adulthood; the process of transition/transfer should ensure that these evolving concerns are addressed | |
| 2018: Peron et al. Healthcare transition from childhood to adulthood in tuberous sclerosis complex [ | Healthcare transition from childhood to adulthood is required to ensure continuity of care; transition for patients with tuberous sclerosis complex is complicated by the multi-systemic nature of this condition, age-dependent manifestations, and high clinical variability, as well as by the presence of intellectual disability in at least half of the individuals; special services and support are required, as is the transition between pediatric and adult teams | |
| 2019: Bar et al. Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex [ | Adult care system needs to develop better multidisciplinary and coordinated care; pediatric-to-adult-health system continuity would decrease the gaps in care, mainly for cognitive and psychiatric impairment | |
| Obesity and | 2006: Doyle et al. Stages of change and transitioning for adolescent patients with obesity and hypertension [ | Promote self-efficacy and self-care; attention to the promotion lifestyle changes and adherence to treatment regimens as these patients enter adulthood; the use of motivation interviewing and cognitive-behavioral techniques may encourage lifestyle changes and treatment adherence and assist in preparing patients for transition to the adult health care setting |
| 2013: Shrewsbury et al. Transition to adult care in adolescent obesity: a systematic review and why it is a neglected topic [ | Internationally, there is an absence of published intervention programs/policies, and limited clinical guidance and expert opinion on the transition of adolescents with obesity | |
| 2019: Zhong et al. Health literacy, nutrition knowledge, and health care transition readiness in youth with chronic kidney disease or hypertension: a cross-sectional study [ | Health literacy and nutrition knowledge predict self-management and transition readiness and should be evaluated during the transition process | |
| Urinary | 2017: von Gontard et al. Adolescents with nocturnal enuresis and daytime urinary incontinence–How can pediatric and adult care be improved–ICI–RS 2015? [ | Incontinence in adolescents is a neglected research topic and clinical care is often suboptimal; since patients are seen by both pediatric and adult services, the alignment and harmonization of diagnostic and therapeutic principles is needed; an organized transition process is recommended |
| 2012: Drake. The adult urology perspective on management of stress urinary incontinence in | Regular interaction between the relevant specialties for continuity of care, the best results at transition, the long-term outcomes of pediatric urological procedures, and the development of new surgical techniques |