Effect of extended home care on nursing compliance and quality of life in children with nephrotic syndrome

doi:10.21203/rs.3.rs-3197962/v1

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Effect of extended home care on nursing compliance and quality of life in children with nephrotic syndrome

https://doi.org/10.21203/rs.3.rs-3197962/v1

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Background: Nephrotic syndrome is characterized by a prolonged course, easy recurrence, multiple comorbidities and difficult care. Children with nephrotic syndrome have good compliance during hospitalization due to medical supervision, but often fail to implement care plans well after discharge.

Objective: To investigate the effect of continuous home care on nursing compliance, immune function and quality of life of children with nephrotic syndrome.

Methods: Ninety-eight cases of discharged children with nephrotic syndrome admitted to our hospital from January 2020 to January 2023 were selected for retrospective analysis. The children were divided into 54 cases in the observation group and 54 cases in the comparison group according to the different nursing programs. The observation group used the continuous home care model for the assessment of nursing problems, care and effect evaluation, while the comparison group used the conventional pre-discharge health education and regular telephone follow-up after discharge. The children in both groups were compared in terms of nursing care compliance, immune function and quality of life.

Results: The compliance rate of diet, fluid intake, medication, dialysis regimen, daily life, and exercise was higher in the observation group than in the control group, and the difference was statistically significant (P<0.05). The observation group had higher disease cognitive ability, disease-related behaviors, beliefs about the disease and overall scores than the control group after care, and the difference was statistically significant (P<0.05). The quality-of-life index scores of children in both groups were higher than those before care, and the scores of behavioral ability, physical function, psychological function and social function of children in the observation group were higher than those in the control group after care, and the difference was statistically significant (P<0.05).

Conclusion: Continuing home care for children with nephrotic syndrome can effectively improve the satisfaction level of children's quality of life, especially in family life, self-awareness and compliance with care.

Continuity of care

nephrotic syndrome

nursing compliance

quality of life

Pediatric nephrotic syndrome is a chronic disease with pharmacological care as the main clinical care method, represented by glucocorticoids [1]. Existing studies have confirmed that continuous administration of glucocorticoids can effectively care for the disease while reducing the recurrence rate within 2 years [2]. However, the long duration of use of hormonal drugs and their side effects are of great concern to children and their parents [3]. Compared to adult children, children are less likely to cooperate with care and lack relevant expertise, which increases the recurrence rate and the frequency of their complications and seriously affects their long-term prognosis, and the need for post-discharge care remains high [4].

The extended home care approach is currently developing rapidly worldwide, and with the increased incidence of various chronic diseases, the extended home care model is gaining attention [5]. Extended home care means that nursing care is no longer limited solely to the hospitalization period and the place of care is no longer restricted to the hospital, and all possible resources are used to extend the time of nursing services vertically and broaden the level of care horizontally in order to meet the health needs of the child after returning home from the hospital as much as possible [6]. Continuing home care is mainly to care for the child's late out-of-hospital care, so that he or she actively cooperates with the care, and continuing home care increases the trust of the child and parents, improves parental confidence, and continuing home care eliminates negative effects such as the child's fear of the ward, which in turn improves his or her nursing compliance [7].

We investigated the changes in adherence, immune function and quality of life of children with nephrotic syndrome before and after nursing care by exploring the effect and prognosis of continuous home care on the care of nephrotic syndrome. To provide more theoretical basis for the care of nephrotic syndrome and to develop new ideas and new methods of nephrotic syndrome care.

1.1 Study subjects

The case data of 98 discharged children with nephrotic syndrome admitted to our hospital from January 2020 to January 2023 were selected for retrospective analysis. The children were divided into 54 cases each in the observation group and the comparison group according to the different nursing programs.

1.2 Inclusion criteria

(i) children diagnosed with nephrotic syndrome, with detailed clinical data and basic information; (ii) children with normal intellectual development, normal thinking and language skills, normal communication skills, and clear consciousness; (iii) children aged 9 to 18 years old who received hormone therapy until they met the discharge criteria.

1.3 Exclusion criteria

(i) children who could not be followed up after discharge, children with combined mental illness or depression, children with concomitant secondary diabetes mellitus; (ii) children with combined serious primary diseases such as cardiovascular and hematopoietic system, and liver function ALT or AST of more than 1.5 times the upper limit of normal. Children whose parents are unable to take care of them for a long time, children whose hospitalization is interrupted for various reasons; (iii) those with intellectual disabilities, those with physical disabilities, and those whose parents suffer from mental disorders or mental retardation.

1.4 Methods

In the observation group, the continuity of family care model was used for the assessment of care problems, care and effect evaluation, i.e., the follow-up information such as the name, sex, age, treatment process, contact information and home address of the child was registered on the day of discharge. A health information booklet on nephrotic syndrome was distributed to the family. The nursing staff takes the whole family care nursing measures for the children, and makes follow-up telephone visits and SMS guidance to the parents of the children once a month after the children are discharged from the hospital. At each follow-up visit, the main nursing problems that existed at each stage after the child's discharge from the hospital were addressed, and the degree of improvement of each problem of the child was evaluated using the outcome evaluation system. In addition to participating in the routine care of the child, parents should also master and instruct the child in technical care, such as: the measurement method, normal range and precautions of the thermometer; the measurement method, normal range and precautions of the blood pressure meter; the correct measurement method, normal range and perineal cleaning of urine protein. Evaluate the changes in the child's psychological status after discharge, provide timely guidance for the child to express his or her emotions, listen patiently to the child's complaints and difficulties encountered in the process of recovery, encourage the child to communicate more with parents and friends, and actively participate in outdoor activities. We will find out whether the child is taking medication in accordance with the doctor's instructions, whether the condition recurs during medication, whether complications and adverse drug reactions occur, and give guidance or advice on the problems. Family follow-up visits were conducted once a month to observe the mental status and emotional reactions of the children, maintain close communication with parents, and learn about the recent hormone use of the children indirectly through parents. In the comparison group, routine pre-discharge health education and regular post-discharge telephone follow-up were used. The medical and nursing staff informed the children about the medication and dosage, reminded the children to take the medication on time and according to the dosage, and told the children to pay attention to the relevant matters, and informed the children to do regular check-ups on time so that the medical and nursing staff could keep abreast of the children's condition.

1.5 Observed indicators

Relevant scores: the Knowing, Believing, and Acting questionnaire was used for the survey [8]. The questionnaire included cognitive ability about disease (18 entries), disease-related behaviors (18 entries), and beliefs about disease (9 entries), a total of 45 entries, and each entry was scored on a scale of 1 to 5, with a total of 45 to 225 points, with higher scores suggesting that the children had clearer cognition about disease, and the Cronbacha coefficient of the questionnaire was 0.925, suggesting that the scale had good reliability and validity. Nursing compliance [9]: a self-developed nursing compliance scale for children with chronic kidney disease was used, which included diet, fluid intake, medication, dialysis regimen, daily life, exercise and other aspects, and each aspect was considered as compliance by fully complying with the medical drink. Adherence rate = number of adherence cases/total cases × 100%. Quality of life [10]: the concise health status survey scale was used to assess the quality of life of the children in both groups before and after care, which mainly included four dimensions: behavioral ability, physical function, psychological function and social function, and the total score of each dimension of the scale was 100, and the higher the score, the higher the quality of life of the children.

1.6 Statistical methods

All statistical data in this study were entered into excel, and SPSS 28.0 was used for statistical calculation. Measurement data conforming to the normal distribution were expressed as Mean ± SD, independent samples t-test was used, count data were compared by chi-square test, and rank data were compared by rank sum test. P < 0.05 was considered statistically significant.

3.1 Comparison of clinical data of study subjects

The mean age, gender, body mass index, Average disease duration and clinical staging of patients in the Observation group were not statistically significant compared with the comparison group (P > 0.05). See Table 1.

Table 1

Comparison of baseline information between the two groups of patients
Group	Average age (years)	Gender (Male/Female)	Body mass index (kg/m²)	Average duration of illness (years)	Clinical Typing
Group	Average age (years)	Gender (Male/Female)	Body mass index (kg/m²)	Average duration of illness (years)	Simplexity	Nephrosis type
Comparison group (54)	11.06 ± 1.71	34/20	23.05 ± 2.23	1.35 ± 0.29	18	36
Observation group (54)	10.98 ± 1.62	33/21	23.40 ± 2.03	1.10 ± 0.31	17	37
t	0.377	0.039	-0.821	-0.480	0.042
P	0.051	0.843	0.414	0.632	0.837

3.2 Comparison of nursing compliance

In the observation group, the compliance rate of diet, fluid intake, medication, dialysis regimen, daily life, and exercise was higher than that of the comparison group, and the difference was statistically significant (P < 0.05). See Fig. 1.

3.3 Comparison of correlation scores

There was no statistically significant difference between the two groups in the comparison of pre-care related scores (P > 0.05). After care, the disease cognitive ability, disease-related behaviors and beliefs about the disease scores of the observation group were higher than those of the comparison group, and the difference was statistically significant (P < 0.05). See Fig. 2.

3.4 Comparison of quality-of-life indicators

There was no statistically significant difference in the quality-of-life scores between the two groups of children under care (P > 0.05). After care, the quality-of-life index scores of children in both groups were higher than those before care, and the behavioral ability scores, physical function scores, mental function scores and social function scores of children in the observation group were higher than those in the comparison group after care, and the difference was statistically significant (P < 0.05). See Fig. 3.

Pediatric nephrotic syndrome is a group of clinical syndromes caused by increased permeability of the glomerular basement membrane due to multiple causes, resulting in large amounts of protein loss from the urine in the plasma [11]. It is clinically characterized by massive proteinuria, hypoproteinemia, hyperlipidemia, and marked edema, with massive proteinuria and hypoproteinemia being necessary for diagnosis [12]. The main treatment modality for these diseases is currently pharmacological, mainly using glucocorticoids and cytotoxic drugs [13]. In practice, glucocorticoids are the most used drugs in the treatment of kidney diseases [14]. The use of this drug usually follows the principle of "adequate initial dose, slow reduction, and long maintenance", with prednisone as the representative drug, which can be replaced by the corresponding dose of prednisolone orally or intravenously when the patient has liver damage and severe edema [15]. Many studies have now confirmed the positive significance of extended home care on treatment compliance in nephrotic syndrome [16]. Studies in the literature have shown that extended home care interventions are effective in improving compliance with hormone therapy in children with nephrotic syndrome, thereby reducing their relapse and complication rates [17]. Some literature has confirmed that home care interventions can significantly improve children's compliance with hormone therapy, thus effectively reducing recurrence or relapse of nephrotic syndrome [18]. A study of treatment compliance in children discharged from hospital with nephrotic syndrome found that the compliance rate of children in the test group reached 100% compared with 79.3% in the control group, which shows that the continuous home care intervention has some clinical application value [19].

Our study found that the observation group had higher rates of dietary compliance, fluid intake compliance, medication compliance, dialysis regimen compliance, daily living compliance, and exercise compliance than the comparison group, and the differences were statistically significant. The disease cognitive ability, disease-related behaviors, beliefs about the disease and overall scores of the observation group were higher than those of the comparison group after care, and the differences were statistically significant. The quality-of-life index scores of children in both groups after care were higher than those before care, and the scores of behavioral ability, physical function, psychological function and social function of children in the observation group after care were higher than those in the comparison group, and the differences were statistically significant. It indicates that extended home care can effectively improve the level of quality of life satisfaction of children with nephrotic syndrome. Continuing home care firstly intervenes in the late out-of-hospital treatment of the child [20]. Appropriate and effective nursing interventions can relieve the emotional tension of the child, make him or her cooperate with treatment in a positive manner, and enhance the confidence of his or her parents to overcome the disease [21]. Secondly, gentle and kind health care personnel are more likely to make patients and their families rely on and trust them, which in turn improves treatment compliance [22]. Third, the ward, as a source of stress, tends to create a negative psychology in the child, which affects his or her treatment compliance [23]. Extended home care allows children to have standardized and effective follow-up treatment at home, eliminating the negative effect of the ward on them and improving their treatment adherence [24].

In our study, it was found that the treatment compliance rate of patients in the observation group was higher than that of the comparison group, and the data suggest that psychological care combined with comfort care for patients with nephrotic syndrome is conducive to improving the treatment compliance rate of patients. The reason may be due to the fact that effective communication during the nursing intervention gained the trust of the patients and their families and brought the nurse-patient relationship closer, which was conducive to improving the patients' treatment compliance [25]. Meanwhile, the quality of life scores of patients in the observation group were higher than those in the comparison group in all dimensions, suggesting that psychological care combined with comfort care for patients with nephrotic syndrome is beneficial to improve the quality of life of patients [26]. The reason for this analysis may be due to providing patients with guidance on daily life precautions and dietary care during the intervention [27]. Helping patients to establish good dietary habits and promote the process of disease improvement is conducive to preventing the incidence of complications and recurrent events and improving the long-term survival quality of patients [28]. A related study found that performing continuous care for hemodialysis patients can effectively relieve patients' anxiety and depression and improve their quality of life, treatment compliance and nursing satisfaction [29].

There are some shortcomings in our study. And as a more common chronic kidney disease in children, the treatment and care of nephrotic syndrome is a long-term and complex process. Therefore, the duration of the intervention could be appropriately extended in the course of future studies to obtain a more representative study of the effects of the nursing intervention. The overall sample size is still small and does not accurately reflect the effect of the intervention. Therefore, the sample size can be appropriately increased in the course of future studies so as to reduce random errors and increase the reliability of the results. In order to enable the children to understand the content of the study, children with nephrotic syndrome aged 9 to 18 years old, in school age and adolescence were selected as the study subjects for the nursing intervention, and the age of onset of nephrotic syndrome is mostly 2 to 7 years old, so in the process of this intervention, due to the older age of the children, the longer duration of the disease, the different cognitive comprehension ability of each child, the different degree of disease development, and the large individual differences, etc. Therefore, the effect of the intervention was affected by the age of the children, the long duration of the disease, the cognitive understanding of each child, the degree of development, and the individual differences. In future studies, the scope of the study could be more precise in the selection of subjects.

In conclusion, continuous home care for children with nephrotic syndrome is effective in improving children's quality of life satisfaction, especially in family life, self-awareness, and compliance with care.

Data availability

The figures and tables used to support the findings of this study are included in the article.

Conflicts of interest

The authors declare that they have no conflicts of interest.

Funding statement

This work was not supported by any funds.

Acknowledgements

The authors would like to show sincere thanks to those techniques who have contributed to this research.

Statement

All methods were carried out in acordance with relevant guidelines and regulations.

All experimental protocols were approved by a named institutional and/or licensing committee.

Confirming that informed consent was obtained from all subjects and/or their legal guardian(s) for participants below age

Ethics approval and consent to participate

Our organization does not need ethical approval when reporting individual cases or series of cases.

Consent for publication

All authors consent for publication.

Authors' contributions

Ying and Fang wrote the main manuscript text , Ni and Liu prepared tables and prepared figures. All authors reviewed the manuscript.

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No competing interests reported.

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Effect of extended home care on nursing compliance and quality of life in children with nephrotic syndrome

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