Mental health of patients with adolescent idiopathic scoliosis and their parents in China: a cross-sectional survey

Scoliosis is a three dimensional deformation of the spine with a Cobb angle of the major curve ≥10° in a standing anteroposterior X-ray image [1]. About 85% of these individuals are idiopathic scoliosis with no known etiology [2]. According to the age of onset, idiopathic scoliosis can be classified as infantile, juvenile, and adolescent [1]. Among them, adolescent idiopathic scoliosis (AIS) is the most common type, with a prevalence rate of approximately 2 to 3% based on data from the school screening studies [3, 4].

AIS can negatively affect the mental health of the patients, especially resulting in depression [5]. Several instruments, such as the Short-Form-36(SF-36), the Bad Sobernheim Stress Questionnaire (BSSQ), and the Scoliosis Research Society 22 Questionnaire (SRS-22), have been used to assess the mental health of AIS patients [6, 7]. Their parents, the close family caregivers, might also be affected because they have to take on new responsibilities, or give up past activities due to the stress of their children’s deformities and mental health alterations. Several previous studies have confirmed that the parents of the AIS patients may also be affected by this deformity [8‐13]. The parental anxiety level of AIS patients decreased significantly from preoperative to postoperative stages but still remained high [13]. The parents view the deformity differently from the patient, as they overestimate the patient’s stress level, and have greater concerns and expectations regarding scoliosis surgery [8, 11, 12].

Common mental disorders (CMDs) such as depression and anxiety can have implications for long-term health outcomes associated with increased fatigue, impaired long-term disease activity and physical disability [14]. Therefore, it is very important for scoliosis surgeons to recognize and address parental CMDs when parents accompany the AIS patient to see a doctor. In this study, we hypothesized that the parental mental health of patients with AIS might be negatively affected and related to some potential risk factors, such as patients’ factors, socio-economic factors, and the severity of the deformity.

In this study, we were able to depict a remarkable increase in the incidence of pCMDs (pMDD and pGAD) prevalence among the parents of AIS patients. Morbidities of both parental pMDD and pGAD in the AIS group were significantly higher than those in the control group. Previously, AIS has been regarded as a chronic condition that affects an adolescent’s bodily configuration, consequently leading to alterations in psychological health and lifestyle [5, 7]. The parents of these patients, the closest and long-term caregivers, might be forced to make changes in their own lives, take on new responsibilities, or give up past activities due to the stress of their children’s illness and alterations. The Caregiving Career/Stress Process model suggests that life events can lead to persistent negative changes in people’s roles that wear away at desirable elements of self-concept with the arousal of stress [20, 21]. Once the demands and obstacles that exceed or push parental capacity to adapt to the limit, the mental health of the parents can be negatively affected. The relationship between the parental perception of how difficult it is to care for the child and the feelings of depression has been confirmed and might explain why the parental anxiety of AIS patients still remains high after surgery [13, 22].

In the clinic, deformity surgeons should pay attention to the parental mental health of AIS patients when diagnosing and treating these patients. Because CMDs can not only deteriorate the quality of life and social functioning but also cause the development and exacerbation of chronic illness [23]. It has been confirmed that cardiovascular disease, diabetes, asthma, smoking, and obesity are all significantly associated with anxiety and depression [24].

Depression and anxiety in the parents shared a very close relationship. More than half of the parents diagnosed with pMDD also had pGAD. Depression and anxiety almost always go together, as depression tends to be past-oriented, whereas anxiety is future-oriented [25, 26]. Therefore, we should meanwhile focus on depression and anxiety in parents.

Both depression and anxiety in the parents were moderately associated with those in the patients, respectively. There might be two reasons why the psychiatric symptom scores of the parents were associated with similar psychopathology in their children: the heritability and/or the parenting stress [27]. Compared to the mental health status of the fathers, maternal mental health was more likely to be elevated, especially for depression. The PHQ-9 scores of the mothers were significantly higher than those of the fathers. Because caregiver stress tends to be higher in mothers, maternal depression is more strongly associated with internalizing problems in children than paternal depression [28, 29].

More insight into these risk factors of pMDD or pGAD can facilitate earlier recognition of these parents that may benefit from more intensive treatment. As reported previously, general risk factors for parental psychopathology include financial problems, unemployment, divorce, being a single parenting, and the demographic characteristics of the parent and child [30, 31]. Referring to Raina’s multidimensional model for examining the determinants of psychological health in the parents of children with health issues [21], these sociodemographic variables and some clinical variables were selected as potential risk factors for pMDD or pGAD to analysis in this study. The results showed that a Cobb angle of the major curve ≥50°, patients with pMDD, and low education level of parents were the risk factors for parental pMDD; household income < 8000 rmb/month was the risk factor for parental pGAD.

Parental pMDD was associated with a Cobb angle of the major curve ≥50°. A higher Cobb angle of the major curve indicates the possibility of disturbed appearances, curve progression, and severe back pain. All these concerns might arouse or aggravate the parental depression. Otherwise, surgical procedures are often be suggested when the Cobb angle of the major curve is more than 50°. Although planed surgery is not a risk factor for pMDD, it is possible that the fear and burden of surgery may further aggravate the parental depression based on these above mentioned concerns.

Parental pMDD was strongly correlated with patients with pMDD. Parents whose children suffer from psychiatric symptoms are at risk for psychiatric symptoms themselves [26]. As discussed above, parental depression can be affected by their offspring’s depression through two pathways: the heritability and/or the parenting stress [27]. Moreover,parents’ perceptions of their child’s depression regarding their deformity are stronger than their child’s own assessment [12].

Low education level of the parents was an independent risk factor for parental pMDD. There is an inverse association between education attainment and depression, as reported previously [32]. In addition, the protective effect of education will increase somewhat with time throughout one’s life [33].

Low household income (≤8000 rmb/month) was the only risk factor for parental pGAD in this study. A similar relationship has been reported between low levels of household income and CMDs, including GAD [34]. This might be explained by social causation and social selection [35]. Social causation posits that adversity, stress, and reduced capacity to cope, as they relate to low income increase the risk of CMDs. The social selection hypothesis suggests that individuals with CMDs have a predisposition to declining socioeconomic status.

These findings support the recognition that the parents of children with AIS may suffer from CMDs and suggest the importance of conducting assessments of the parental psychosocial support needs. According to these risk factors, the screening need of the parents can be classified at two levels. It may help to first identify vulnerable parents, especially for those with risk factors, and then facilitate early referral for more focused assessment and interventions.

There were several limitations in this study. First, the sample size was limited, because it was a single center study. Second, we have not studied parents’ coping strategies for meeting the stress of their children’s illness. Future studies should be conducted with an objective study to research and discuss these coping factors.

The morbidities of pMDD and pGAD in parents of children with AIS were higher than those in parents with healthy children. Parental depression and anxiety were closely associated with their child’s depression and anxiety. A Cobb angle of the major curve ≥50°, patients with pMDD, and low education level of the parents were the independent risk factors for parental pMDD. Low household income was the risk factor for parental pGAD. The parental mental health status of AIS patients should be paid attention to by deformity surgeons, especially for those parents with risk factors, it would help to facilitate early referral for more focused assessment and interventions. Insights into the parental coping strategies can help to guide treatment in the future research.