Patient-Reported Mental Health and Quality of Life in Pediatric Adolescent Idiopathic Scoliosis Patients

Abstract

Adolescent idiopathic scoliosis (AIS) is a prevalent spinal deformity that can affect patients' mental health and overall quality of life. Orthopaedic providers commonly employ questionnaires such as the (scoliosis research society) SRS-22, PROMIS, and pediatric/s quality of life, among others, to assess patient-reported outcomes, including pain interference, depressive symptoms, and self-image. This article aims to examine the effect of various AIS treatments on patients' mental health and health-related quality of life (HRQoL), while also discussing the utility of these questionnaires in clinical research. The reviewed studies consistently demonstrate that treatment may influence patients' mental health, emphasizing the vital role of questionnaires in measuring mental health and HRQoL throughout their treatment journey. Furthermore, these instruments enable healthcare providers to implement strategies that enhance patients' mental well being as part of their treatment plans. AIS poses a risk factor for poor mental health and HRQoL. However, further research is warranted to determine the longitudinal effect of AIS on mental health and HRQoL. These investigations will empower healthcare providers to identify optimal treatment plans, thereby alleviating the burden on the mental health and HRQoL of AIS patients.

Adolescent idiopathic scoliosis (AIS) is a three-dimensional spinal deformity characterized by spine curvature ≥ 10° in the early stages of adolescent development affecting approximately 1% to 4% of children ages 10 to 18 years.¹ Patients with AIS experience varying symptoms, including back pain, shoulder height asymmetry, rib prominence, and pulmonary involvement; however, most patients may never exhibit any clinical symptoms at all. Patients undergoing treatment for AIS often experience numerous psychological changes. According to a 2018 review by Gallant et al, patients undergoing treatment for AIS often demonstrated alterations in mood, particularly anxiety and depression, as well as self-reported body image and identity.^2,3 Moreover, parents of patients with AIS also show increased rates of depression and anxiety that closely relate to their children's mental health.⁴

There are many available treatment options for AIS, including observation, scoliosis-specific exercises (SSEs), bracing treatment, and surgical management. The type of treatment that an individual receives depends on the severity of their curvature, the curve pattern and location, and their skeletal maturity. Their treating physician will monitor the response of the spinal curvature on radiographs with the goal of nonsurgical treatments being to prevent curve progression.

Success of the administered treatment is not only assessed by the outcome of the percent curve change but can also be gauged by the patient's mental health and their health-related quality of life (HRQoL). To measure patient mental health and HRQoL, researchers can choose from several patient-reported outcome (PRO) questionnaires (see Table 1). Patient-reported outcomes (PROs) can assess the mental health and HRQoL of the patient throughout their treatment journey and give insight into the relationship between treatment methods and the mental health of patients with AIS.

Table 1.

Patient-Reported Outcome Questionnaires

Name	History	Measures/Domains	Benefits	Limitations
SRS-225,6	• Scoliosis Research Society 22-item questionnaire • Developed by the Scoliosis Research Society in 2003 to reflect the patient's perception of their HRQoL	• 22 questions, divided into 5 domains: Pain, self-image, function/activity, mental health, and satisfaction with treatment • Each section is scored and expressed as the average of all the scored items with higher scores indicating better outcomes	• A validated self-report • Translated and validated in multiple languages, including Chinese, Japanese, Spanish, and Swedish	• Lacks strong metric properties, including Rasch analysis (converts ordinal scores into interval measures) • Rasch analysis allows researchers to convert raw scores into a “person measure” • SRS-22 cannot make statistically strong conclusions about HRQoL • Needs cross-cultural validity and responsiveness
PROMIS7–10	• Patient-reported outcome measurement system • Developed by the National Institutes of Health in 2004 for clinical research and practice	• 25 measures including fatigue, mobility, pain interference, anxiety, depressive symptoms, and peer relationships	• Reliable and validated • Customizable through a computerized test format • PROMIS may be a reliable system in assessing patient-reported outcomes in the AIS patient population • Can assess patient's physical, mental, and social health across multiple conditions • Orthopaedic trauma clinics have found the major strength of its quick administration and a reliable identifier for predicting risk factors that lead to poor oucomes • Can measure multiple domains instead of the 5 discrete domains tracked by the SRS-22	• Uses a universalist translation method, which is an issue in the Spanish version • Does not account for regional linguistic differences (a 2014 study showed that a group of low-income Latina women in the Southwestern United States with a breast cancer diagnosis found it difficult to interpret the questions in the survey due to their regional linguistic differences) • Lack of specificity for body parts and lack of validation for mental health outcomes
PEDS-QL11,12	• Pediatric quality of life questionnaire • Originated from a pediatric cancer database • An extension of a program developed by Dr. James Varni and his associates over several years • Originally assessed the generic quality of life of pediatric cancer populations	• A modular approach assessing the HRQoL in children and adolescents with acute and chronic health conditions • Contains four multidimensional scales: Physical, emotional, social, and school functioning • Three summary scores: Total scale score, physical health summary score, and psychosocial health summary score • Designed to measure the core dimensions of health in addition to the child's functioning in school with their condition	• A proven reliable and valid tool in measuring the HRQoL in a multiplicity of pediatric populations • Translated into numerous languages • The PEDS-QL form is a quick and easy form to fill out, so responsiveness is high • Its scaling range is more sensitive, and there are broader age ranges for patients to self-report or for parents to proxy-report • Disease-specific modules allow for administration across different clinical subspecialties • Integrates generic score scales with disease-specific modules into a single measurement system	• Like the PROMIS questionnaire, further studies examining the reliability and validity of the PEDS-QL form in other languages is necessary
BSSQ13	• Bad Sobernheim scoliosis questionnaire • Developed by physicians and psychologists to assess the psychological stress exhibited by patients wearing back braces	• Measures the stress induced by the bracing treatment method and stress induced by the spine deformity itself	• Enables physicians to understand the psychological effect bracing treatment has on adolescent patients	• Primarily designed for patients with adolescent idiopathic scoliosis • Does not evaluate overall HRQoL
SF-3614	• Developed in 1992 by RAND health care for pediatric cancer populations	• 36 questions total • 8 domains of physical and mental health: physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health	• Translated in multiple other languages • Self-reported and easy to fill out	• Must be adaptable to different patient populations, especially for those with higher cognitive and functional capabilities
ISYQoL6,15	• Italian Spine Youth Quality of Life Questionnaire • Created by the Italian Scientific spine institute to further the SRS-22 form and ensure more dependable analytical capacities	• 20-item questionnaire with 7 assessing bracing treatment on HRQoL and 13 for nonbrace wearers • Scored 0, 1, or 2 • The ordinal score is converted to an interval measure, expressed on a 0-100% scale (100% = high quality of life)caronni	• Uses Rasch analysis–based properties that make this questionnaire statistically stronger than the SRS-22. • Has better known-groups validity • Capable of detecting the effect of disease severity on HRQoL • Largely used for AIS patients using braces	• Limited to comparisons between bracing treatment and nonbracing treatment • Questions do no hit mental health aspects and are more focused on quality of life

AIS = adolescent idiopathic scoliosis, BSSQ = bad sobernheim stress questionnaire, HRQoL = health-related quality of life, PEDS-QL/PEDSQL = pediatric/s quality of life, RAND = research and development, SRS = scoliosis research society.

Nonsurgical Treatment Methods

Nonsurgical treatments for AIS include observation, SSEs, and bracing treatment, whereas surgical methods are mainly posterior spinal fusion. Each treatment modality can have different effects on patient mental HRQoL. Considering the potential adverse effects of these treatments on mental health and HRQoL is crucial when developing a treatment plan.

Observation and Scoliosis-Specific Exercises

In most cases of AIS, patients remain under observation, which is considered a nonsurgical approach. This routine observation includes regular clinic follow-up and radiographic imaging to monitor the curvature. The decision to decline other treatments may result in worsened curvature, increased pain, lower self-esteem based on appearance, and increased anxiety and fear over the future of their back.¹⁶ However, if the curve is mild, patients remain unaffected. It is important to consider these factors and the impact on mental health outcomes in individuals who remain under observation.

Longitudinal studies on the effects of observation of AIS on mental health and associated HRQoL is extremely limited. Most available studies suggest that there are no notable differences in HRQoL and mental health outcomes in patients undergoing observation; in fact, studies show that receiving other forms of treatment may markedly influence HRQoL and mental health (see Table 2). If the curvature worsens, alternative interventions may be explored; however, many curves that stabilize or improve over time do not require any further interventions. Although findings are broad, additional prospective studies comparing observed patients with those receiving other interventions could help clarify differences in outcomes.

Table 2.

Literature Review of Nonsurgical and Surgical Treatments of Adolescent Idiopathic Scoliosis

Author/Year	Treatment	Mean Age (Range)	Diagnosis	Sample Size	PROs Used	Main Findings
Studies on nonsurgical treatments of AIS
Płaszewski et al17 (2014)	Observation for scoliosis (n = 73) Scoliosis-specific exercises (n = 71)	At diagnosis: 10.5 (range 9 to 16) years	AIS (n = 57) Early-onset scoliosis (n = 11) Control subjects, no scoliosis (n = 76)	144	Beck Depression Inventory (BDI) General health questionnaire (GHQ-28)	Patients with scoliosis showed more depressive symptoms than nonscoliotic patients (45% and 33%, respectively) Patients with milder deformities had greater tendency for depressive symptoms (P < 0.05) A tendency was observed for depressive symptoms in patients undergoing scoliosis-specific exercises than observation alone No notable differences were observed in GHQ scores between scoliotic and nonscoliotic patients
Leszczewska et al18 (2012)	Scoliosis-specific exercises (n = 52) Bracing treatment AND scoliosis-specific exercises (n = 21)	13.9 (range 9-18)	AIS	73	BSSQ brace (assessing psychological strain from management) BSSQ deformity (assessing effect of spine deformity on mood, social interactions, and stress)	No notable difference was found regarding the BSSQ deformity scores between the groups Patients managed with both brace and SSE exhibited lower BSSQ brace scores than patients managed with SSE alone
Watanabe et al19 (2020)	Observation (n = 46) Bracing treatment (n = 61) Healthy controls (n = 321)	At skeletal maturity: 14.9 (range 12 to 18) years At the final follow-up: 24.9 (range 12 to 39) years	AIS (n = 107), split into 3 groups by curve - Major main thoracic (MT) curve with flexible thoracolumbar/lumber curve (TL/L) group (n = 50) - Major TL/L curve with flexible MT curve (n = 19) - Double-major (DM) curve (n = 38) Control subjects, not scoliosis (n = 321)	428	SRS-22 Visual analog scale (VAS) Oswestry Disability Index (ODI) Short-Form-12 (SF-12) Japanese Orthopedic Association Back Pain Evaluation Questionnaire (JOABPEQ)	All 3 scoliosis groups had markedly lower SRS-22 self-image category scores than controls All 3 scoliosis groups had markedly higher VAS pain scores than controls, and the DM and TL/L groups had higher lower back pain scores than the MT group The MT group had markedly higher mental health scores on the JOABPEQ than controls SF-12 and ODI did not show any notable differences No notable findings were found comparing observation patients with bracing treatment patients
Glowack et al20 (2013)	Bracing treatment (n = 36)	10-17 years	AIS, all female, with parents (n = 36)	36	The Strengths and Difficulties Questionnaire-25 (SDQ-25)	Scores were similar and not markedly different between patients and parents over the course of brace treatment Poor psychological outcome was associated with curve severity as well as the duration of brace wear and patient age As curve severity increased, so did the discrepancies between patient and parent SDQ-25 scores
Piantoni et al21 (2018)	Bracing treatment (n = 43)	13.1 (range 10.8-14.5) years	AIS, all female (n = 43)	43	Brace questionnaire (BrQ)	BrQ standardized main score was 63.7/100 % of people who reported feeling “somehow affected” in the following domains - Psychology domain: 72% - Motor domain: 56% - Social domain: 54% - Pain domain: 46% - School domain: 40% 53.5% reported a negative effect of bracing treatment on their HRQoL
Cheung et al22 (2019)	Currently bracing treatment (n = 141) Observation (n = 299) Previously braced (51) Initial evaluation (n = 161)	14.8 years	AIS (n = 652)	652	SRS-22 5-Level ED-5D	Currently bracing treatment patients had markedly lower HRQoL than patients under observation according to the EQ-5d-5L (0.08) and SRS-22 (0.35) scores Currently bracing treatment patients scored markedly lower in all domains of the SRS-22, except for the satisfaction with management domain, where they scored 3.01 higher than observation patients did Previously braced patients scored higher on the SRS-22 in all domains than currently bracing treatment patients
Lin et al23 (2019)	Bracing treatment	AIS age: 13.7 years JIS age: 7.4 years	AIS (n = 112) JIS (n = 96)	208	Strengths and Difficulties Questionnaire (SDQ) Zung self-rating depression Scale (SDS) Center for Epidemiological studies depression Scale for children (CES-DC)	The average SDQ score was higher for AIS group than for JIS group Females had a greater extent of depression compared with males in both groups Larger Cobb angles and longer durations of bracing treatment increased severity of depression
Schwieger et al24 (2016)	Bracing treatment (n = 199) Observation (n = 120)	10-15 years	AIS, female	319	PEDS-QL Spinal Appearance Questionnaire (SAQ)	Patients with ≥ 40° Cobb angles had markedly poorer scores in all 3 body-image domains than those with less severe curves No notable differences were found in scores for either questionnaire between the bracing treatment and observation group The PEDSQL scores for both groups were similar to scores of healthy children After a year of follow-up, patients showed notable improvement in QOL scores
Studies on surgical (PSF) treatment of AIS
Larson et al25 (2019)	Bracing treatment (n = 41) Surgery (n = 103) Observation (n = 36)	10-17 years at treatment 43 at time of 30-year follow-up	AIS	180	SRS-22 SAQ ODI EQ5D	SRS scores were 10% worse than population-based controls SRS mental health domain scores were not markedly different between surgical and nonsurgical groups No notable differences found in other PROs between any of the groups
Rahman et al26 (2020)	Surgery (n = 206)	60 years	Any lumbar or cervical spine degenerative disease or deformity	206	PROMIS	Before surgery, 24% of patients reported depressive symptoms, but 52% of those reported improvement in their symptoms after surgery Before surgery, 46% of patients reported anxiety, but 74% of them reported improvement in their symptoms postoperatively
Rodrigues et al27 (2017)	Surgery (n = 63)	11.9 years	AIS (n = 63)	63	SRS-30	A negative association was found between age at surgery and SRS-30 outcomes. Patients after the age of 15 years at the time of surgery had worse outcomes than those before 15 years After surgery, a notable improvement was found in SRS outcomes in all 5 domains Individuals who used bracing treatment before surgery had markedly lower scores than those that did not do bracing treatment beforehand
Mariconda et al28 (2016)	Surgery (n = 87)	14.8 years (range 11-22)	AIS	87	SF-36 SRS-23	Surgery led to improvement in SF-36 scores as seen at the 1-year postoperative follow-up Pain and self-image domains of the SRS were lower before surgery and significantly improved after surgery Mental health categories of the SF-36 at follow-up visits were similar to or surpassed preoperative scores

AIS = adolescent idiopathic scoliosis, BSSQ = bad sobernheim stress questionnaire, HRQoL = health-related quality of life, JIS = juvenile idiopathic scoliosis, PEDS-QL/PEDSQL = pediatric/s quality of life, SRS = scoliosis research society.

Patients with mild or moderate AIS may also use SSEs to manage their curves. Some studies have reported mixed aspects of mental health in patients receiving SSEs (Table 2). These studies consistently show that SSEs are effective conservative treatments for AIS and can help reduce curvature but did have differences in HRQoL and mental health outcomes. For instance, some reports suggest a tendency for depressive symptoms in patients solely undergoing SSEs, whereas others indicate lower stress levels among patients combining SSEs with bracing treatment. It has also been observed that patients undergoing exclusively SSEs might experience more psychological strain than those using SSE in congruence with other treatments. However, these differences may be influenced by smaller sample sizes and utilization of different PROs. Despite the evidence linking physical activity with improved mental health, some individuals may perceive SSEs merely as a treatment rather than a leisure physical activity, which could affect their psychological well being.¹⁷ The quality of this evidence remains low, highlighting the need for additional studies to evaluate the clinical relevance of SSEs.

Overall, there is limited data looking at the effect of nonsurgical observation and SSEs on HRQoL and patient mental health. There is a lack of prospective, longitudinal data within this patient population. Given the conflicting reports on the long-term effects of physical therapy and observation, further longitudinal follow-up on these patients is needed to clarify their effects and guide clinical decision making.

Bracing Treatment

Bracing treatment is a nonsurgical treatment option that uses active pressure to prevent curve progression in AIS patients. The Scoliosis Research Society criteria for bracing treatment recommend the patient to be 10 years or older when brace is administered, Risser score of 0 to 2, primary curve angle of 25° to 40°, and no prior attempted treatment.²⁹ Providers recommend wearing braces for ≥16 hours a day to optimize the effect of bracing treatment.

The effect of bracing treatment on patients' mental health and HRQoL have yielded mixed results. Some studies suggest that adolescents undergoing bracing treatment for AIS show a tendency for depressive symptoms and other negative attitudes about the brace on their HRQoL. Factors such as self-image and body perception often emerge as concerns for those using bracing treatment methods. The aesthetic appeal of braces can vary; for example, some designs can be concealed beneath clothing, which may enhance patient acceptance and encourage brace-wearing compliance, especially when patients are involved in the design process and feel more positive about their appearance. However, other types of designs can be more difficult to conceal and can often cause patients to feel self-conscious of their peers' perceptions of them. As a result, several studies show patients reporting varying levels of distress stemming from uncertainties about duration of brace wear, reduced energy levels, and limited exercise capacity. Compliance may be affected by various factors, such as parental attitudes, the age at which treatment begins, and the length of time braces are worn.

Although most studies show that patients with AIS report negative attitudes toward bracing treatment and its effects on their HRQoL and mental health during treatment, other studies indicate that PROs can be similar to those of healthy control populations without scoliosis and often improve after treatment concludes. Many studies indicate that bracing treatment may not have any negative effect at all on HRQoL or mental health and that in many cases, using a brace earlier on can help lower the likelihood of surgical interventions later on, which may contribute to improved HRQoL outcomes.

The differences in these PROs may be influenced by a lack of long-term follow-up with bracing treatment patients, meaning that many studies focus primarily on HRQoL and mental health during treatment rather than after. This emphasizes the need for prospective, longitudinal studies that compare mental health and HRQoL of patients at each stage of treatment: before bracing treatment, during bracing treatment, and after bracing treatment. Furthermore, comparing bracing treatment with other treatment groups, as well as healthy controls without scoliosis, will help clarify the effect of bracing treatment on PROs.

Surgical Management

Surgical management is considered if the spinal curve progresses to a major Cobb angle of ≥ 45° in adolescents. Spinal fusion is the most common type of procedure that aims to correct spinal curvature and stop curve progression. Many patients report experiencing depression or anxiety before surgery, and these symptoms can persist after the procedure. However, it has been observed that postoperative improvements in spinal curvature often correlate with better PROs, including reduction in anxiety and depressive symptoms (see Table 2).

Common symptoms experienced by patients following spinal fusion surgery may include occasional back pain, limited range of motion, and activity restrictions. The effect of these symptoms on overall health remains uncertain. Several studies indicate that poorer PRO scores are often observed preoperatively, particularly in patients with more severe curvature. However, these scores generally improve following surgery. Studies consistently demonstrate that the only domain where scores remain low after surgery is in physical function, suggesting that posterior spine implants may sometimes limit mobility. Overall, although initial improvements are common, the presence of complications can negatively affect long-term recovery and quality of life.

In the long term, many patients show improvements in body image, self-esteem, and reductions in anxiety and depressive symptoms in the first year after surgery. However, follow-up assessments indicate that although some HRQoL measures remain stable for about a decade postsurgery, there can be a gradual decline in the overall quality of life over time. Factors contributing to this decline may include dissatisfaction with surgical scars and the appearance of surgical site infections (SSIs). Overall, although initial postoperative outcomes may be positive, ongoing monitoring and support are essential to address the evolving mental health and quality of life concerns that may arise as patients adjust after spine surgery.

It should also be noted that adverse events following surgical management might also have a large impact on PROs. Surgical site infections and wound complications are events that can occur following surgery and require additional treatment and hospitalization. Adverse events following surgery, such as SSIs and wound complications, can markedly influence PROs and overall quality of life. These complications may require further medical intervention, leading to increased healthcare resource utilization, which can impose financial burdens on patients and their families.³⁰ In addition, the stress associated with SSIs can alter interpersonal dynamics, particularly for adolescents who may have previously assumed caretaker roles within their families.^24,28,30,31 Addressing the likelihood of complications and planning for mental health support is crucial in managing the holistic well being of patients undergoing surgical treatment for scoliosis.

Addressing Mental Health in Adolescent Idiopathic scoliosis

Similar to other medical conditions such as severe physical trauma and traumatic brain injuries, patients with AIS often report a decreased HRQoL before treatment. Adolescents who have experienced multiple physical traumas typically show lower overall scores compared with healthy controls.³² However, their scores tend to improve markedly over time, paralleling the outcomes of AIS patients undergoing treatment.

Research indicates that adolescents facing similar challenges experience reduced participation in daily activities, diminished motivation, increased fatigue, and lower satisfaction with social interactions. Notably, after at least six months of treatment, PROs show marked improvement.³² AIS is equally associated with heightened risks for anxiety and depression, particularly when the curvature is severe and affects the adolescent's physical appearance. Given that adolescence is a critical period for personal development and self-identity, it is essential to consider the long-term impact of treatments on HRQoL and mental health. Research on mental health in adolescents with varying diagnoses is limited; however, several studies highlight the importance of self-image in adolescent development and sense of self (Table 2). Specifically, in cases of AIS with more severe curves undergoing brace treatment, as well as dissatisfaction with surgical scar appearance, these factors markedly affect reduced HRQoL. Although long-term outcomes show improvement in these scores, future research must further investigate these dynamics.

Counseling is one of the most widely used strategies to mitigate the onset of mental health issues. It is available at various life stages for individuals with AIS, with services provided in hospitals and nearby facilities. Recognizing that a diagnosis of AIS can markedly influence mental health, access to counseling services becomes crucial. Support groups also play a vital role, offering patients opportunities for connection and empowerment with their peers. Therefore, it is crucial to have these services to address and improve mental health in AIS.

Discussion

Use and Limitations of Patient-Reported Outcome Measures

Patient-reported outcome questionnaires are a valuable tool to assess patient's perception on treatment and can be easily integrated into clinic flow. With the use of electronic patient-reported outcome questionnaires (ePROs), clinicians can obtain long-term follow-up with patients even after they complete treatment or transfer to a different care facility. There are no established guidelines to determine which PRO measure to use in patients with AIS. The SRS-22 is often used in reporting of research in AIS. PROMIS questionnaires are increasing in utilization due to their adaptability across disease states, ability to be computer adaptive tests, and less time required to complete than older PROs such as the SRS-22. A systematic review of articles looking into the use of PROMIS in spine discovered that the PROMIS is incredibly useful in spine clinics, as it allows physicians to compare outcomes across interventions (like surgery, bracing treatment, observation, etc) and pathologies (AIS, neuromuscular, congenital, etc).¹⁰ It markedly reduces their time searching through literature and reduces test-taker burden.

Table 1 displays the various measures/domains, benefits, challenges, and histories of multiple mental health and HRQoL questionnaires that are commonly used in orthopaedic practices.

Increasing usage of PRO measures allow providers to evaluate the effect of different treatments on their patients. The advent ePROs have increased the efficiency and ease of access to clinicians when compared with their hard copy counterparts. One study shows that ePROs, specifically the PROMIS, is especially useful in orthopaedic trauma because of its quick administration abilities and computer adaptations.³³ When researchers used the PROMIS questionnaire for upper extremity trauma patients, they found that it markedly reduced the time for patients to complete, thus reducing the burden, as well as its incredible sensitivity to physical improvements over time.³³ ePROs are easier to implement into clinic flow, as they are not dependent on the patient's physical presence within clinic. This option is much more viable as patients can receive and complete these ePROs independent of proximity and time availability. In addition, this allows for the review and assessment of the data by the clinician in advance and independently of the visit. Although there may be benefits to having a physical PRO copy to give to patients in clinic, there is no notable evidence that they have better compliance rates than ePROs. Furthermore, there are no current studies that directly analyze the quality of responses in hard copy PROs compared with that of ePROs—rather, studies evaluate the completion and response rate between the two types.

There are some challenges, however, associated with PRO questionnaires. Although most questionnaires have been adapted into an electronic format, parents and patients may not have the training or knowledge required to use the instrument or to complete the questionnaire. Several studies have shown that age plays a role in the low response rates, especially among older populations. One study showed that age had a notable effect on response rate using a text message–based service collecting outcomes using the PROMIS questionnaire; patients aged 12 to 32 years had the highest response rate compared with those aged 33 to 69+ years.³³ Although the PROMIS questionnaire poses minimal test-taker burden, the time to complete often discourages patients to respond on their own time. Consistent longitudinal follow-up with adolescent patients may be difficult to obtain due to the lack of interest and loss of follow-up. To combat some of these issues, providers should be aware of respondent burden. Questionnaires should be selected deliberately, and the frequency of administration should be considered to reduce respondent burden and to increase response rates.

Another limitation of PRO questionnaires is their inability to separate environmental factors from other factors. The physical and social environment around the patient plays a notable role in influencing their mental health and HRQoL. Verma et al.³⁴ reported that the geographical living environment of patients (urban vs. rural) influences the postoperative SRS-22 HRQoL questionnaire results. Patients living in New York had better scores (more physical activity, improved self-image, lower pain, and better mental health) than AIS patients living in Ghana. Current PRO questionnaires, like the SRS-22, have difficulty separating environmental influences from important factors like pain management and mental health. Further studies that allow clinicians to isolate out environmental factors and socioeconomics are needed so that adequate support can be provided to specifically address those matters that may influence the HRQoL and mental health of patients.

Authors' Preferred Technique

We use an electronic system for collecting PROs that is integrated in our electronic medical record (EMR). New patients scheduled in clinic for evaluation are assigned baseline PROMIS metrics (Physical Activity, Pain Interference, and Depressive Symptoms). Patients scheduled for surgery are given additional metrics based on their age and planned surgery. These can include the PROMIS, EOSQ-24, EOSQ-SELF, SRS-22, and CP-CHILD, among others. All surveys are sent automatically ahead of the clinic visit or surgery by integration of our PRO acquisition platform with our patient schedules in our electronic medical record. Upon arrival in clinic, anyone who has not filled out their PROs ahead of time is identified and given a tablet loaded with their assigned questionnaires. Furthermore, we use computer adaptive PROMIS tests, which adjust the type and number of questions based on the patient's responses, allowing for a more specialized understanding of each patient's data. The typical patient can complete all three PROMIS questionnaires in less than 5 minutes. In cases where patients exhibit concerning values on mental health PROMIS metrics, these are discussed with the patient and their family, along with resources for mental health care. Follow-up questionnaires to monitor progress are sent at a scheduled cadence based on the diagnosis and treatment provided.

Conclusion

The diagnosis and treatment of AIS can have notable effects on physical health and mental well being. Recognizing the effect of AIS on patients' mental health and integrating it into treatment planning will likely improve patient satisfaction and outcomes. The use of PROs to assess anxiety and depressive symptoms before treatment initiation provides valuable insights for healthcare providers.

By prioritizing the mental well being of AIS patients and addressing mood and anxiety factors, we can potentially influence health-related outcomes. Research has indicated that managing psychological aspects alongside physical treatment can lead to improved health-related quality of life in AIS patients, even before formal treatment commences. This highlights the importance of early identification and appropriate management of anxiety and depression.

As we move forward, we strongly advocate for the widespread implementation of PROs in clinical settings to proactively screen for mental health and HRQoL changes in AIS patients. By effectively screening for anxiety and depression, healthcare professionals can initiate timely interventions and enhance the overall well being of patients. This comprehensive approach has the potential to optimize treatment outcomes and contribute to the holistic care of individuals with AIS.

In summary, integrating mental health considerations into the treatment of AIS is essential. By adopting PRO questionnaires as a routine screening tool and real-time monitoring of patient mental health, providers can better identify individuals who may benefit from mental health services who may otherwise be unrecognized, leading to improved patient outcomes and an improved quality of life.