Discussion
elevated distress, inflammatory bowel disease, SSNS, chronic illness, FRNS/SDNS [SSNS
MUCOPOLYSACCHARIDOSIS TYPE II, INFLAMMATORY BOWEL DISEASE, CHRONIC ILLNESS, DISEASE, STEROID-RESISTANT NEPHROTIC SYNDROME
This is the first study that systematically investigated parental distress at the first presentation of SSNS, showing the results of a psychosocial screening questionnaire for distress and the presence of everyday problems in parents of a child with SSNS compared to a group of reference parents. Clinically elevated distress was not more frequently observed in parents of children with SSNS compared to the reference group. However, mothers reported more parenting problems than reference mothers. Additionally, having more problems with work or study, dealing with their child (mothers), keeping emotions under control, dealing with friends (fathers), and fears, and talking about the disease (both) were reported. Being a parent of a girl with SSNS was associated with higher stress thermometer scores, and lower parental age with more practical problems, which was not the case in reference parents.In contrast to other studies that focused on parents with a child with FRNS/SDNS [SSNS is characterized by its relapsing–remitting pattern. Despite many clinical trials investigating different courses of corticosteroids, the risk for relapse after the first onset has been around 70–80% for decades [Our results suggest that the care for the child relies more heavily on mothers than on fathers — or that mothers feel that they should take care more than fathers. This is substantiated by the finding that mothers of a child with SSNS had more problems with work or study than reference mothers, while fathers did not. A previous study has shown that maternal labor force participation (working > 12 h/week) is lower in families with a child with a chronic illness [In addition to work problems, parenting problems were more prevalent in SSNS mothers, which was mainly the result of having more problems with dealing with the feelings of and talking about the disease with their child. Parenting problems were also observed in previous studies with parents of children with inflammatory bowel disease, mucopolysaccharidosis type II, and home parental nutrition [In previous studies, country of birth and paid employment have been associated with higher scores on parental distress and more everyday problems. Apart from a female child and lower parental age, no sociodemographic or child characteristics (age) were associated with parental distress. Higher thermometer scores (i.e., more parental distress) were reported in parents of girls with SSNS. Whether this is because parents worry more about their daughters, or that girls display more problematic behavior — steroid-related or not, is not known. Younger parents may be less experienced in parenting without a stable financial and/or family situation, leading to more practical problems. Also, younger parents presumably have younger child(ren) who are more dependent on their care. Clinicians should be aware that younger parents may be more prone to distress. However, it must be noted that the association for both variables was small to moderate, even for psychosocial studies.There are some limitations to this study. First, there may have been a selection bias as the inclusion rate of participation in the RCT is around 55–60% (inclusions not yet finished). Main reasons for exclusion and declination were not willing to participate (traveling distance to participating hospital, time consuming, faith in good outcome), language barrier, or steroid-resistant nephrotic syndrome. Parents who participated in the trial may have been more motivated and higher educated, and have a more stable family situation. This could have skewed the results. Moreover, parents may have been more hopeful for a better outcome as their child had a 50% chance to have received levamisole, which is thought to be more efficacious in preventing relapses of SSNS. Second, although the response rate was high, our sample size was relatively small. This could have limited the statistical power to detect meaningful differences between our sample and the reference group. Third, given that we compared 34 different outcomes per group, there is a chance of 1–2 false positive findings since we did not correct for multiple testing and used a significance level of 