Current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome:a retrospective study

doi:10.21203/rs.3.rs-1610516/v1

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Research Article

Current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome:a retrospective study

https://doi.org/10.21203/rs.3.rs-1610516/v1

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Journal Publication

published 07 Feb, 2023

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Purpose

To investigate the current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome (SWS).

Methods

A total of 105 parents of children with SWS completed a self-designed general information questionnaire, generalized anxiety questionnaire (GAD-7), patient health questionnaire (PHQ-2), stress perception scale (PSS-4), simple coping scale (SCSQ) and disease uncertainty scale (PPUS).

Results

The total uncertainty score of parents of children with SWS was 79.07 ± 13.24, and the average item score was 2.82 ± 0.47. Multiple linear regression analysis showed that anxiety and simple coping were the main influencing factors of parents' disease uncertainty in children with SWS (P < 0.05).

Conclusions

The parents of children with SWS have a high level of disease uncertainty. Medical staff should pay attention to the source of parents' disease uncertainty and carry out targeted interventions, which are of great importance in reducing parents' disease uncertainty.

Sturge-Weber syndrome

Parents

Disease uncertainty

Present situation

Influence factor

Sturge-Weber syndrome (SWS), also known as cerebral trigeminal hemangioma syndrome, is a neurocutaneous syndrome involving the facial skin, central nervous system and eyes, often accompanied by glaucoma and facial features. Capillary malformations are distributed by the trigeminal nerve [1], with an incidence of 1/50000-1/20000 [2]. SWS is a rare disease with multisystem involvement. The treatment cycle is long, the cost of treatment is expensive, and the treatment effect is relatively poor. As the main caregivers in the child's daily life, recovery and treatment, the parents of children with SWS are faced with many pressures, which has an impact on parents’ quality of life and psychology and makes them prone to a sense of disease uncertainty，which then is associated with the child's mental health and wellbeing [3]. Disease uncertainty refers to the individual's lack of ability to judge disease-related stress events [4]. Illness uncertainty can damage family members' quality of life and physical and mental health, affect family members' role adaptation, interfere with their decision-making functions, and affect the patient's disease recovery [5, 6]. In recent years, disease uncertainty among parents has received increasing attention, but research has mainly focused on the parents of children receiving palliative care [7] or with congenital heart disease [8] or epilepsy [9]. It has been pointed out that the parents of children with SWS have a high level of illness uncertainty, that their psychological state is not good, and that illness uncertainty is proportional to their psychological state [10]; however, there are few reports on the disease uncertainty of parents of children with SWS. This is because the disease is rare. However, our research center currently has the largest sample of patients with SWS reported in the world. This paper aims to initially explore the current situation of disease uncertainty in parents of children with SWS and explore its influencing factors, with a view toward implementing interventions for medical staff. The paper aims to provide evidence for interventions that are effective in reducing parental illness uncertainty.

Research objects

Using convenience sampling, 105 parents of children with SWS who were treated in the Ninth People's Hospital Affiliated to Shanghai Jiaotong University School of Medicine from April 2020 to June 2021 were selected as the research subjects. The inclusion criteria were as follows: children diagnosed with Sturge–Weber syndrome who had clear consciousness, had no recent history of major family accident or acute psychological trauma, provided informed consent and voluntarily participated in this study. The exclusion criteria were as follows: age <18 years old; history of mental illness, depression or severe cognitive dysfunction; inability to understand the content of the test questionnaire; or refusal to complete the test questionnaire or lack of cooperating in completing it.

Research methods

General information questionnaire

Based on the literature research and preinterview, this questionnaire was self-designed and included 14 items on topics such as the relationship between the interviewee and the patient, age, place of residence, marital status, and educational level.

Generalized anxiety questionnaire (7-item Generalized Anxiety Disorder Scale, GAD-7)

The GAD-7 is a screening tool for generalized anxiety disorder and consists of seven items that ask subjects how distressed they have been according to the corresponding symptoms in the past two weeks. Based on a four-point scale from 0 (not at all) to 3 (almost every day), the total score is 0-21. On the Chinese version of the GAD-7, a total score greater than or equal to 10 points is positive for generalized anxiety screening [11]. The sensitivity and specificity of the GAD-7 for screening generalized anxiety disorder in general hospital outpatients were 86.2% and 95.5%, respectively; the Cronbach's α coefficient was 0.898, and the test-retest reliability coefficient was 0.856 [12].

Patient Health Questionnaire (PHQ-2)

The PHQ-2, extracted from the 9-item Patient Health Questionnaire (PHQ-9), was used to study depressive symptoms, measuring the frequency of depressive mood and anhedonia over the past 2 weeks, with a score of 0 (not at all) to 3 (almost every day) [13]. A positive PHQ-2 score of ≥3 points and a PHQ-2 score of 86% and 78% or more have a sensitivity and specificity for a diagnosis of depression of 61% and 92%, respectively [14]. It has been verified and used in China [15].

Perceived Stress Scale (PSS-4)

The PSS-4, compiled by Cohen [16], was used to assess subjects’ stress levels and had four items using a Likert 5 scale on a scale of 0 (never) to 4 (very common). Compared the Stress Perception Scale, the PSS-4 is simpler and more intuitive. A number of confirmatory factor analysis studies on the PSS-4 scale have found that the PSS-4 scale contains two factor structures: positively described items and negatively described items. Among them, the items with positive descriptions are items 2 and 3, and reverse scoring is used. The higher the score is, the higher the perception of stress; the items with negative descriptions are items 1 and 4, and there is no reverse scoring. The higher the score is, the higher the perceived pressure. The total score of the four items is the total score of perceived pressure, and the higher the score is, the greater the perceived pressure. The PSS-4 was confirmed to have good reliability in the Chinese population, with a Cronbach's a coefficient of 0.833 [17].

Simplified Coping Style Questionnaire (SCSQ)

The questionnaire is a self-assessment scale compiled by Xie Yaning and Zhang Yukun based on a foreign coping style scale and adapted according to the actual needs and the characteristics of the Chinese population [18]. It consists of 2 subscales of positive coping and negative coping, including 20 items, using a 4-point scoring method as follows: not taking = 0, occasionally taking = 1, sometimes taking = 2, and often taking = 4. The positive coping subscale includes questions 1-12, which mainly reflect the characteristics of individuals adopting positive coping styles when encountering stress. The overall Cronbach's α of the scale was 0.90, the Cronbach's α coefficient of the positive coping subscale was 0.89, and the Cronbach's α coefficient of the negative coping subscale was 0.78.

Illness uncertainty scale (Parent Perceptions of Uncertainty Scale, PPUS)

The PPUS was revised by the domestic scholar Mai Jiaxuan [19] to assess the level of illness uncertainty of parents of hospitalized children. The scale contains 28 items and 4 dimensions, namely, ambiguity, lack of clarity, lack of information, and unpredictability. The scale uses a 5-point Likert scoring method, where strongly agree = 5 points, agree = 4 points, uncertain = 3 points, disagree = 2 points, and strongly disagree = 1 point; items 6, 9, 11, 19, 23, and 25-28 are reverse scored, and a higher total score indicates a higher level of disease uncertainty. The scale has good construct validity; the Cronbach's α coefficient of the total scale is 0.91, and the Cronbach's α coefficients of each dimension are between 0.72 and 0.87.

Data collection methods

First, informed consent was obtained from the department leaders and the patients. The members of the research group selected the parents of the patients who met the inclusion and exclusion criteria to conduct the survey. When distributing the questionnaires, a unified guide was adopted to explain the content, purpose, significance and confidentiality of the data to the subjects. For those who could not complete the questionnaires by themselves due to various reasons, the investigator explained the above points to them one by one so that parents could decide whether to participate after understanding, and the investigator was responsible for filling in the form. The questionnaires were collected on the spot. When the questionnaires were collected, the investigators checked the contents of the investigation. If there were any doubts, they asked the parents about them and resolved them. If they found any problems, such as missing answers, they could be corrected in a timely manner. A total of 108 questionnaires were distributed this time, 105 of which were valid, for an effective recovery rate of 97.22%.

Statistical methods

The data were entered by two persons in Excel, and the data were analyzed by SPSS 18.0 software. Enumeration data are described as the frequency and percentage; measurement data are expressed as the mean ± standard deviation. Using the t test, analysis of variance, Spearman correlation analysis and multiple linear regression analysis of influencing factors, P<0.05 was considered statistically significant.

General information

This study investigated 105 parents of children with SWS, of whom 90 were mothers (85.7%). Most of the participants were 35 years or older (37.1%), and 68 lived in cities (accounting for 64.8%); 98 were married (93.3%), and 74 (70.5%) had a high school education or above. Most (64.8%) family incomes could cover the medical expenses for children; 30 (28.6%) were anxious. Screening was positive, and 22 (21.0%) screened positive for depression.

Among the 105 children with SWS who participated in the survey, the male to female ratio was close to 1:1; 56 were only children (53.3%), and 66 were the first child (62.9%) in the family. Regarding the affected eyes, 46 children each were affected in the left eye or right eye (43.8% each), and 13 children were affected in both eyes (12.4%). The results of univariate analysis showed that there was a statistically significant difference in the anxiety of the children's parents regarding the uncertainty of the disease (P < 0.05). See Table 1 for details.

Table 1

Univariate analysis of illness uncertainty in parents of children with SWS (n = 105)
	Characteristics	N (%)		F value/t value	P value
Parents	Relationship to patient
	Father	15 (14.3)	77.60 ± 16.68	T = 0.462	0.645
	Mother	90 (85.7)	79.31 ± 12.68	T = 0.462	0.645
	Age, years
	≤ 29	28 (26.7)	80.04 ± 13.16	F = 0.271	0.763
	29–35	38 (36.2)	77.82 ± 11.53
	≥ 35	39 (37.1)	79.59 ± 14.99
	Residence
	City	68 (64.8)	77.81 ± 14.43	T=-1.45	0.150
	Town	37 (35.2)	81.38 ± 10.50	T=-1.45	0.150
	Marital status
	Married	98 (93.3)	79.45 ± 13.44	T = 1.108	0.270
	Divorced	7 (6.7)	73.71 ± 9.16	T = 1.108	0.270
	Education
	Junior high school and below	31 (29.5)	80.90 ± 10.33	F = 2.204	0.092
	High school or secondary school	22 (21.0)	82.23 ± 13.41
	College or Undergraduate	48 (45.7)	75.75 ± 13.40
	Master’s degree and above	4 (3.8)	87.25 ± 23.77
	Can family income cover children’s medical expenses?
	Yes	68 (64.8)	77.57 ± 12.94	T=-1.578	0.118
	No	37 (35.2)	81.81 ± 13.52	T=-1.578	0.118
	Sleep quality
	Good	39	75.92 ± 13.66	F = 2.570	0.058
	General	62	80.65 ± 12.06
	Insomnia	2	73.00 ± 16.97
	Sleep disturbance	2	97.50 ± 26.16
	Anxiety
	GAD ≥ 10	30 (28.6)	86.53 ± 11.21	T = 3.896	0.000
	GAD < 10	75 (71.4)	76.08 ± 12.86	T = 3.896	0.000
	Depression
	PHQ ≥ 3	22 (21.0)	83.36 ± 11.96	T = 1.728	0.087
	PHQ < 3	83 (79.0)	77.93 ± 13.40	T = 1.728	0.087
Patient	Sex
	Male	58 (55.2)	78.57 ± 14.68	T=-0.426	0.671
	Female	47 (44.8)	79.68 ± 11.34	T=-0.426	0.671
	Only child
	Yes	56 (53.3)	78.34 ± 12.44	T=-0.600	0.550
	No	49 (46.7)	79.90 ± 14.19	T=-0.600	0.550
	Child's birth order
	First child	66 (62.9)	77.79 ± 12.36	F = 0.983	0.378
	Second child	33 (31.4)	80.73 ± 14.83
	Third child	6 (5.7)	84.00 ± 13.52
	Affected eye
	Left eye	46 (43.8)	79.09 ± 14.14	F = 0.626	0.537
	Right eye	46 (43.8)	78.02 ± 12.30
	Both eyes	13 (12.4)	82.69 ± 13.56

Illness uncertainty scores of parents of children with SWS

The total score of the child's parents' sense of disease uncertainty was 79.07 ± 13.24 points, the average item was 2.82 ± 0.47 points, and the scores of each dimension were as follows from high to low: uncertainty, 33.55 ± 8.56 points; lack of clarity, 20.30 ± 4.37 points; unpredictable, 13.34 ± 3.26 points; and lack of information, 11.88 ± 2.76 points. See Table 2 for details.

Table 2

The total score and dimension scores of the uncertainty of parents of children with SWS (n = 105)
Characteristics	Number of entries	Minimum	Maximum	Score (x ± s)	Items are evenly divided (x ± s)	Score sort
Ambiguity	11	13	55	33.55 ± 8.56	3.05 ± 0.78	1
Lack of clarity	8	10	33	20.30 ± 4.37	2.54 ± 0.55	2
Not predictable	4	4	20	13.34 ± 3.26	3.34 ± 0.82	3
Lack of information	5	6	21	11.88 ± 2.76	2.38 ± 0.55	4
Total score	28	42	116	79.07 ± 13.24	2.82 ± 0.47

Correlations between illness uncertainty and stress perception and simple coping among parents of children with SWS

Illness uncertainty was positively correlated with stress perception (r = 0.304, P < 0.01) and negatively correlated with simple coping (r=-0.220, P < 0.05). The correlation of each dimension is shown in Table 3.

Table 3

Correlation analysis (r value) between illness uncertainty and perception of stress and simple coping in parents of children with SWS
Characteristics	Perception of stress			Simple coping
Characteristics	Positive	Negative	Total score of stress perception	Positive	Negative	Total score of simple coping
Ambiguity	-0.004	0.410**	0.313**	-0.259**	0.076	-0.185
Lack of clarity	0.087	0.134	0.131	-0.253**	-0.052	-0.227*
Not predictable	0.143	0.126	0.178	-0.187	-0.062	-0.180
Lack of information	0.137	-0.015	0.062	0.115	-0.013	0.083
Disease indeterminate total score	0.074	0.347**	0.304**	-0.266**	0.011	-0.220*
Note: P < 0.05; *P < 0.01

Influencing factors of illness uncertainty in parents of children with SWS

Multiple linear regression analysis was carried out with illness uncertainty of parents of children with SWS as the dependent variable and item anxiety, stress perception and simple coping, with statistically significant univariate analysis results, as independent variables. The results showed that the influencing factors of illness uncertainty of the parents of the children were anxiety and simple coping. The independent variable assignments are shown in Table 4, and the results of multiple regression analysis are shown in Table 5.

Table 4

Assignment methods of independent variables that affect the factors affecting illness uncertainty in parents of children with SWS
Characteristics	Assignment method
Anxiety	Positive = 1; Negative = 0
Perception of stress	Substitute the original value
Simple coping	Substitute the original value

Table 5

Results of multiple regression analysis of factors affecting illness uncertainty in parents of children with SWS
Characteristics	B	SE	β	T value	P value
Constant term	83.449	6.845	-	12.191	0.000
Anxiety	10.855	2.985	0.372	3.637	0.000
Perception of stress	0.117	0.650	0.019	0.180	0.858
Simple coping	-0.266	0.120	-0.212	-2.214	0.029
Note: R = 0.419; adjusted R-squared = 0.176; F = 7.172; P = 0.000

Parents of children with SWS have a high level of illness uncertainty

The results of this survey showed that the total score of the children’s parents’ sense of illness uncertainty was 79.07 ± 13.24 points, and the average item score was 2.82 ± 0.47 points, which was greater than 50% of the scale, indicating that the sense of lack of disease certainty was at a high level [20]. Previous studies have found that parents of children with brain tumors [21], parents of children with idiopathic membranous nephropathy [10], and parents of children with Kawasaki disease [22] also have a high sense of disease uncertainty. The reason may be related to the unpredictable treatment effect and prognosis as perceived by children's parents, as well as parents' limited understanding of the disease. The mode of modern medical care has changed from patient-centered to patient and family-centered. The recipients of care are not only patients but also their families. Parents with a high degree of disease uncertainty do not have an appropriate level of coping after the onset of the disease, which is not conducive to the patient's health. Therefore, it is of great significance to analyze the relevant factors that cause disease uncertainty in patients’ parents. It can also be seen from the table that the item with the highest average score is the dimension of “uncertainty”. The reason for this finding is that 98.1% of the patients’ families in this survey had not experienced the disease, and the parents of the children were relatively lacking in disease-related knowledge. Therefore, during hospitalization, medical staff should adopt a variety of information support methods [23], frequently communicate with the parents of patients through multiple channels, actively evaluate parents' disease uncertainty, and strengthen health guidance to reduce parents' anxiety and illness uncertainty.

The main influencing factors of illness uncertainty in parents of children with SWS

Anxious parents of children with SWS have a more obvious sense of illness uncertainty

The results of the study show that the anxiety of parents of children with SWS is an influencing factor of parents' sense of disease uncertainty. The more anxious the parents of the children are, the stronger their sense of disease uncertainty. Zhu Tingting et al. [24] studied the parents of 113 children with primary nephrotic syndrome and found that the anxiety score of parents was higher than the domestic norm and was positively correlated with parents’ illness uncertainty, which was similar to the results of this study. In this study, 62.9% of the children were the first-born children in their families. In addition to the complexity of the disease and the prolonged treatment cycle, this may lead to parents' anxiety and negative emotions. When they are anxious, parents have no time to pay attention to the relevant information of the disease. This directly leads to the occurrence of a sense of disease uncertainty. For the patient's parents, the material, spiritual and information support provided by relatives, friends and medical staff can relieve anxiety and directly reduce disease uncertainty [25]. This suggests that medical staff should communicate with patients’ families in a timely manner; pay attention to patients and their families [26]; strengthen health education, communication and emotional counseling for parents; guide parents to actively seek social support; improve parents’ psychological resilience; and help parents actively. This can effectively reduce the level of disease uncertainty by applying internal resources of the family to adjust the psychological state and enhance the resilience of the family [7].

A positive coping style can reduce illness uncertainty in children’s parents

This study shows that the coping style of the patient's parents is an influencing factor of parents' sense of disease uncertainty. The more active the parents of the patient are, the lower the sense of disease uncertainty. de Hosson M et al. [8] also obtained similar results to this study in their study of children with congenital heart disease after surgery regarding parents' uncertainty and coping styles. Some researchers also found that the higher the educational level of family members, the lower the disease uncertainty [27, 28]. Among the respondents of this survey, 70.9% had a high school education or above, so their educational level was relatively high. The parents of the children took a more positive coping approach. Positive coping methods are more conducive to producing positive results than negative coping. Parents acquire disease-related knowledge from various sources through active medical treatment and can view the development process, prognosis and outcome of the patient's disease more rationally and objectively, thereby preventing disease uncertainty. Their uncertainty is low. This suggests that medical staff should strengthen the assessment of the coping style of parents of children with SWS. For those who are accustomed to adopting negative coping styles, information support in terms of disease diagnosis and treatment, prognosis, and care should be improved [9], and effective preoperative guidance and treatment should be carried out. Guide [29] promoted the formation of an effective positive coping style, and those who tend to use positive coping styles should focus on the exercise of their personal abilities, tap their own potential and strength, and reduce disease uncertainty. Huang Zhirong et al[30] found in a study of parents of premature infants that family empowerment programs can reduce illness uncertainty in parents of premature infants and improve family care readiness and postdischarge coping abilities. In the future, we will carry out this research on parents of children with SWS.

Limitations

This study also had some limitations that are likely to affect the generalizability of the results. The sample size of the study was relatively small, and it may be possible to expand the sample size to study parents of children with SWS. at the same time, The research object of this study is the parents of children with SWS, and the sample size may be expanded in the future to conduct research on the child's family members to make the research results more representative.

Parents of children with SWS have a high level of illness uncertainty, and this uncertainty is related to parents’ anxiety level and coping style. Therefore, medical staff should correctly assess the level and influencing factors of parents’ illness uncertainty and provide targeted intervention measures to reduce their disease uncertainty.

Ethics approval and consent to participate

This study was performed in compliance with the Helsinki ethical criteria and was approved by the institutional review board of the Ninth People’s Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, approval number [SH9H-2022-T50-1]. Since the data were anonymous, the institutional review board of the Ninth People’s Hospital Affiliated to Shanghai Jiao Tong University School of Medicine approved a waiver of informed consent.

Consent to publish

Not applicable.

Availability of data and materials

All data analysed during this study are included in this article. Further enquiries can be directed to the corresponding author.

Competing interests

The authors declare that they have no competing interests.

Funding

Shanghai Jiao Tong University School of Medicine: Nursing Development Program; National Natural Science Foundation of China (No.81970796) ;Clinical Research Program of 9th People's Hospital affiliated to Shanghai Jiao Tong University School of Medicine(No.JYLJ201905); Cross disciplinary Research Fund of Shanghai Ninth People's Hospital, Shanghai JiaoTong university School of Medicine (YG2019QNA18).

Acknowledgement

The authors also thank children and their parents for enthusiastic participation in the study.

Authors Contribution

Na Du and Yue Wu contributed to study design, data analysis and interpretation and drafted the manuscript. Shan-Shan Xiong, Hong Ji and Lu-Lu Huang contributed to data collection and data analysis. Chang-Juan Zeng and Wen-Yi Guo conceived the study, reviewed, and revised the manuscript. All authors read and approved the final manuscript.

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No competing interests reported.

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Current situation and influencing factors of disease uncertainty in parents of children with Sturge-Weber syndrome:a retrospective study

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