Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome

Rüth, Eva-Maria; Landolt, Markus A.; Neuhaus, Thomas J.; Kemper, Markus J.

doi:10.1016/j.jpeds.2004.08.022

Cited by 84 publications

(108 citation statements)

References 28 publications

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“…These complaints may reflect the profound effect of the disorder and underlines the importance of these patients receiving adequate, supportive and comprehensive treatment. Our results were similar to those reported for children with relapsing steroid-sensitive nephrotic syndrome [12]. One explanation for this in steroidsensitive nephrotic syndrome may be the adverse effects of steroids or the constant fear of imminent relapse by the parents [12].…”

Section: Discussionsupporting

confidence: 90%

“…For our patients with cystinosis, emotional disturbance seemed to be more important than physical complaints or motor functions; the parents also rated positive emotions as being significantly impaired, but in contrast to the assessment of their children, parents also rated autonomy, [44], paediatric renal graft recipients [11] and children with relapsing diseases (steroid-sensitive nephrotic syndrome) [12]. This finding might reflect a shared variance between a mothers' psychological strain and the rating of her child's QOL [45].…”

Section: Discussionmentioning

confidence: 84%

“…Chronic renal disease has been associated with impairments in neurocognitive outcome and quality of life (QOL) [11,12]. Limited information is available on adults with cystinosis in terms of intellectual performance (IP), motor performance (MP), QOL and psychosocial adjustment (PA).…”

mentioning

confidence: 99%

“…Children with cystinosis have been found to have of visual processing impairment [13], poor arithmetic performance [14] and mild intellectual deficits [15], but little is known on the MP, QOL and PA of children with this condition. However, children with chronic kidney diseases of various origins are at risk of impaired PA [16], externalizing behavioural problems and impaired QOL [12,[17][18][19]. We have previously reported neurocognitive outcome and QOL in those children using standardized and validated assessment tests and questionnaires [11,12,20].…”

mentioning

confidence: 99%

“…However, children with chronic kidney diseases of various origins are at risk of impaired PA [16], externalizing behavioural problems and impaired QOL [12,[17][18][19]. We have previously reported neurocognitive outcome and QOL in those children using standardized and validated assessment tests and questionnaires [11,12,20].…”

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confidence: 99%

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Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis

et al. 2009

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Cystinosis is a rare multisystemic progressive disorder mandating lifelong medical treatment. Knowledge on the intellectual and motor functioning, health-related quality of life and psychosocial adjustment in children with cystinosis is limited. We have investigated nine patients (four after renal transplantation) at a median age of 9.7 years (range 5.3-19.9 years). Intellectual performance (IP) was analysed with the Wechsler Intelligence Scale for Children-III (seven children) and the Kaufman Assessment Battery for Children (two children). Motor performance (MP) was evaluated using the Zurich Neuromotor Assessment Test, and quality of life (QOL) was studied by means of the Netherlands Organization for Applied Scientific Research Academical Medical Center Child Quality of Life Questionnaire. Psychosocial adjustment was assessed by the Child Behavior Checklist. The overall intelligence quotient (IQ) of our patient cohort (median 92, range 71-105) was significantly lower than that of the healthy controls (p=0.04), with two patients having an IQ<85. Verbal IQ (93, range 76-118) was significantly higher than performance IQ (90, range 68-97; p=0.03). The MP was significantly below the norm for pure motor, pegboard and static balance, as well as for movement quality. The patients' QOL was normal for six of seven dimensions (exception being positive emotions), whereas parents reported significant impairment in positive emotions, autonomy, social and cognitive functions. Significant disturbance was noted in terms of psychosocial adjustment. Based on the results from our small patient cohort, we conclude that intellectual and motor performance, healthrelated QOL and psychosocial adjustment are significantly impaired in children and adolescents with cystinosis.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 84%

mentioning

confidence: 99%

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confidence: 99%

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confidence: 99%

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Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis

et al. 2009

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Impact of Childhood Glaucoma and Glaucoma Surgery on Quality of Life

Bali

Dada

2018

Surgical Management of Childhood Glaucoma

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Health-related quality of life of children with first onset steroid-sensitive nephrotic syndrome

Veltkamp,

Teela,

Luijten

et al. 2023

Eur J Pediatr

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This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2–16 years) and/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (> 1 SD below the mean of the reference group) or SDQ clinical scores (< 10th and > 90th percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8–18 years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (> 45%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2–7 years and the reference group, except for higher scores on social functioning (5–7 years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and/or EBD. Conclusion: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms. Clinical trial registry: Netherlands Trial Register (https://trialsearch.who.int/; NTR7013), date of registration: 02 June 2018. What is Known:• Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome. What is New:• HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population.• To what extent HRQoL and EBD are affected depends on the age of the patient.

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Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome

Cited by 84 publications

References 28 publications

Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis

Intellectual and motor performance, quality of life and psychosocial adjustment in children with cystinosis

Impact of Childhood Glaucoma and Glaucoma Surgery on Quality of Life

Health-related quality of life of children with first onset steroid-sensitive nephrotic syndrome

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