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SYMPOSIUM: COMPREHENSIVE ORTHOPAEDIC CARE

Do Injured Adolescent Athletes and Their Parents Agree on the Athletes’ Level of Psychologic and Physical Functioning?

Oosterhoff, Jacobien H. F. BSc; Bexkens, Rens MD; Vranceanu, Ana-Maria PhD; Oh, Luke S. MD

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Clinical Orthopaedics and Related Research: April 2018 - Volume 476 - Issue 4 - p 767-775
doi: 10.1007/s11999.0000000000000071
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Abstract

Introduction

Nearly 8 million high school students participate in various recreational sports in the United States [19]. Participation in athletics is associated both with academic achievement [10] and physical health [35], but may also lead to sports-related injuries [29, 36]. It is estimated that approximately 2 million adolescent sports-related injuries occur yearly, which result in 500,000 doctors’ visits [13]. An injury affects not only the physical, but also the psychologic and emotional functioning of an athlete [31]. As such, a comprehensive assessment and understanding of physical and patient-reported psychologic outcomes would be valuable in the care of an injured adolescent athlete. Because parents are often the coordinators of an adolescent’s medical care, access to medical care and treatments sought may be dictated by the parents’ perceptions of their injured child’s needs. There is a risk that an adolescent athlete may not receive the appropriate whole-person health care needed after an injury if the parents’ and child’s perceptions are not aligned. Because the vast majority of parents are at least to some extent engaged in the child’s participation in sports, the parents may also be emotionally involved and have their own independent expectations and desires for their child, which may not necessarily be the same as those of the injured child [12]. Furthermore, because parents are actively involved in communication with coaches and athletic trainers as the child returns to sports after injury, any potential adolescent-parent discordance in perceptions of coping and emotional and physical functioning may negatively impact recovery and return to activities of daily living and sports.

Despite the aforementioned evidence, no studies have investigated whether the perceptions of a parent and child are concordant after a sports-related injury. Prior research with other populations has shown that despite anecdotal evidence, there is a discrepancy between how parents and youth rate psychologic symptoms [17], physical function [11, 24, 30], and coping strategies [9, 22, 27, 34]. Specifically for adolescents, prior work has shown that some parents overestimate their child’s quality of life [1], whereas others underestimate it [4, 5, 15]. Prior studies those focused on adolescents with pain found that greater impairment in adolescents with fibromyalgia was associated with higher discordance between how parents and youth described their family environment [14, 26]. Similar findings have been reported in the mental health literature, in which parent and child discrepancy on the report of a child’s internalizing symptoms was predictive of worse child functioning over time. The potential discrepancy between adolescent athletes’ and parents’ perception, not studied by prior reports, is important because it can affect recovery. For example, if parents overestimate a child’s coping skills or emotional well-being, they may interpret lack of interest in sports or difficulties returning to sport as being a result of impairment from injury. This may lead to requests and pressure for additional medical testing or surgeries, which can negatively impact recovery.

The purposes of this study were (1) to compare adolescent and parent proxy ratings of psychologic symptoms (depression and anxiety), coping skills (catastrophic thinking about pain and pain self-efficacy), and upper extremity physical function and mobility in a population of adolescent-parent dyads in which the adolescent had a sport-related injury; and (2) to compare scores of adolescents and their parent proxies with normative scores when such are available. We hypothesized that there would be a lack of agreement between the self-rating by an adolescent athlete patient rating and the proxy rating by the adolescent’s parent regarding psychologic symptoms, coping skills, and upper extremity and mobility functioning after sustaining a sports-related injury.

Patients and Methods

Fifty-six adolescent patients and their accompanying parent(s) who presented to a single orthopaedic sports medicine specialist in a large urban teaching hospital were approached for participation in this study. Of these, 54 adolescent-parent dyads (eg, pairs) agreed to participate (97%). There were 36 boys and 18 girls with a mean age of 16 years ± 1.6 SD. Patients were accompanied by their mothers in 69% (37 of 54) and in 31% (17 of 54) by their fathers (Table 1). All study procedures were approved by our institutional review board before study startup. The inclusion criteria were (1) adolescent patients between ages 12 and 17 years old; (2) fluent in English; (3) ability of the patient to sign permission for participation on a consent form (patients 14-17 years old) or sign affirmative agreement on a assent form (patients 12-13 years old); and (4) availability of an accompanying parent or guardian who also would be able to sign permission for participation on a consent form (in case there was more than one parent or guardian accompanying the adolescent, they were asked to choose one to participate). The exclusion criteria were (1) adolescent patients younger than age 12 years; (2) English insufficient for understanding questionnaires; and (3) adolescent patients not accompanied by their parent or guardian as their primary caregiver.

Table 1.
Table 1.:
Patient characteristics (n = 54)

Potential study participants were approached on the day of the appointment while they were waiting for their meeting with the treating physician. The study procedures were explained to eligible adolescent patients and parent dyads, and informed consents/assents were obtained from both the patient and parent(s) who agreed to participate. Potential study participants were informed that enrolling in this study is completely voluntary and that they may stop participation at any time without affecting their medical care. No one requested to discontinue the study. Demographic and descriptive data were obtained by self-report. Subsequently, participants completed the self-report measures of depression, anxiety, upper extremity function, mobility, pain catastrophizing, and pain self-efficacy on an encrypted electronic tablet. Accompanying parents completed parent proxy versions of each questionnaire completed by their child.

Patient-reported Outcomes Measurement Information System

The National Institutes of Health developed the Patient-reported Outcomes Measurement Information System (PROMIS) to standardize and promote the assessment of health outcomes as reported by patients [23]. Depression, anxiety, upper extremity function, and mobility PROMIS domains were used in this study to measure patient-reported relevant outcomes. PROMIS item banks are modeled based on one-dimensional item response theory, which uses graded response parameters to fit the data and produce scores [23]. Computer Adaptive Testing (CAT) optimizes the item bank administration by choosing relevant questions through recruiting a dynamic item selection algorithm to target the next items based on already given responses to previous questions [23]. This prevents unnecessary and redundant items to be administered resulting in lowering the burden on the respondent while increasing the level of efficiency and precision [23]. The score for each PROMIS questionnaire ranges from 0 to 100 with a mean score of 50 points for the US population and a SD of 10 points [11]. Higher scores indicate a higher level of the score being measured; that is, a higher score on the depression or anxiety PROMIS questionnaire suggests the patient is more depressed or anxious. A higher score on the mobility or upper extremity function PROMIS questionnaire represents better function. Participants completed the PROMIS pediatric bank measures through an encrypted electronic tablet on https://www.assessmentcenter.net. Because PROMIS CAT measures are relatively new, no minimal clinically important difference (MCID) is available for the measures used in this study.

The parent proxy report items were developed by PROMIS for the 10 existing pediatric self-report content domains [23]. During the development of the parent proxy scales, the items were revised to retain their meaning while modifying the phrasing so that all items involved parents reporting their perception of their child [32]. For example, in the pediatric self-report, children responded to the item “I had trouble sleeping when I had pain,” whereas parents responded to the parent proxy report equivalent of this item: “My child had trouble sleeping when he or she had pain.”

PROMIS Pediatric Bank (Version 2.0) Depression CAT

The PROMIS Pediatric Depression CAT was used to assess the symptoms of depression. It showed strong convergent validity with the Patient Health Questionnaire (PHQ) [3, 16] and the Center for Epidemiological Studies Depression scale (CES-D) [3]. In addition, it offers an advantage over the PHQ and CES-D in that there is increased precision as well as broader effective range of measurement [3]. Also, the CAT has been shown to have a lower level of administrative burden on the study participants, because there would be a median of four items administered compared with nine items in the PHQ or CES-D [2, 3]. A PROMIS Pediatric Depression score of 60 signifies that the patient is 1 SD more depressed than the average person. Likewise, a score of 40 means that the patient is 1 SD less depressed than the average person [23].

PROMIS Pediatric Bank (Version 2.0) Anxiety CAT

The PROMIS Pediatric Anxiety CAT was utilized to measure anxiety level among participants. It has good convergent validity with the general distress subscale of the legacy measure, the Mood and Anxiety Symptom Questionnaire [25]. Furthermore, each scale’s item has been demonstrated to correlate with its relevant counterpart item in the legacy measure [25]. PROMIS Anxiety asks about the participant’s level of fear, anxious misery, hyperarousal, and somatic symptoms over the past 7 days. Higher scores indicate a higher level of anxiety such that a score of 60 points signifies that the patient is 1 SD more anxious than the average person [23].

PROMIS Pediatric Bank (Version 2.0) Upper Extremity CAT

The PROMIS Pediatric Bank Upper Extremity CAT was used to assess self-reported physical function that requires the use of the upper extremity. PROMIS Upper Extremity asks about physical function during the previous 7 days. The questionnaire focuses on activities that require the use of the upper extremity including shoulder, arm, and hand activities. Examples include writing, using buttons, or opening containers. Items are scored such that higher scores depict greater upper extremity function so that a score of 60 points signifies the patient’s upper extremity function is 1 SD higher than the average person [23].

PROMIS Pediatric Bank (Version 2.0) Mobility CAT

The PROMIS Pediatric Mobility CAT was used to investigate activities of physical mobility such as getting out of bed or a chair as well as activities such as running. PROMIS Pediatric Mobility asks about general physical functioning during the previous 7 days. Items focus on activities of physical mobility such as getting out of bed or a chair to activities such as running. Higher scores indicate greater mobility such that a score of 60 means that the patient’s mobility is 1 SD higher than average. By comparison, a mobility score of 40 means that the patient’s mobility is 1 SD worse than average [23].

Pain Catastrophizing Scale Adolescent Short Form

The Pain Catastrophizing Scale Adolescent Short Form (PCS-SF) assesses catastrophic thinking about pain on three dimensions: rumination (“I can’t stop thinking about how much it hurts”), magnification (“I worry that something serious may happen”), and helplessness (“There is nothing I can do to reduce the intensity of the pain”). The scale has six items answered on a 5-point scale ranging from 0 (not at all) to 4 (all the time). The total scale score ranges from 0 to 24 with higher scores representing more catastrophic thinking [28]. The scale has high internal consistency and construct validity criteria [28]. The parents are asked to reflect on past painful experiences of their adolescent in a validated parent proxy version of the PCS. No MCID is available for this measure.

Pain Self-efficacy Adolescent Short Form

The Pain Self-efficacy Adolescent Short Form scale was used to assess self-efficacy to engage in daily life such as activities at school with friends and with family when in pain. The scale has seven questions (ie, “How sure are you that you can be with your friends when you have pain?”) answered on a 5-point scale ranging from 0 (very unsure) to 4 (very sure). The total score ranges from 0 to 28 with higher scores reflecting stronger self-efficacy beliefs [8]. The parent version was developed to mirror that of the child measure and was designed to measure how sure parents are of their child's ability to function when in pain [8, 20]. No MCID is available for this measure.

None of the patients’ demographic or clinical variables (including type of sport, pain duration, or which caregiver was present) was associated with main study outcomes by adolescent self-report or by parent proxy (Table 1).

Statistical Analysis

An a priori power analysis showed that a total sample size of 54 dyads (108 participants) was needed to detect a difference between two dependent means for the primary null hypothesis with an effect size of 0.5 (medium by Cohen’s convention [2]), α of 0.05, and power of 95%. Baseline characteristics were summarized as absolute numbers with frequencies for categorical variables and as means with SDs for parametric variables. Normality of the data was assessed using a Shapiro-Wilk test for normality. A paired t-test was performed to detect any statistical difference between patients’ self-reports and parent proxy reports. We report Cohen’s effect size (Cohen's d [2]) to quantify the magnitude of the difference between the parents’ and adolescents’ perceptions when the difference is statistically significant. Effect sizes are depicted as small if < 0.02, medium if between 0.02 and 0.5, and large if > 0.5. Statistical analysis was performed with STATA 13 (StataCorp LP, College Station, TX, USA). Parametric tests were used because data were normally distributed.

Results

Parents reported that their children had higher scores (47 ± 9 on depression) than what the children themselves reported (43 ± 9; mean difference -4.0; 95% confidence interval [CI], -7.0 to -0.91; p = 0.011; medium effect size -0.47) (Table 2). Similarly, parents reported that their children engaged in catastrophic thinking about pain to a lesser degree (8 ± 5) than what the children themselves reported (13 ± 4; mean difference 4.5; 95% CI, 2.7-6.4; p < 0.001; large effect size 1.0). Parents and children were not different on their reports of the child’s upper extremity physical function (patient perception 47 ± 10, parent proxy 47 ± 8, mean difference -0.43, p = 0.70), mobility (patient perception 43 ± 9, parent proxy 44 ± 9, mean difference -0.59, p = 0.64), and anxiety (patient perception 43 ± 10, parent proxy 46 ± 8, mean difference -2.1, p = 0.21). Also, parents and children were not different with the numbers available on their reports on child and parent proxy pain self-efficacy (patient perception 16 ± 5, parent proxy 15 ± 5, mean difference 0.70, p = 0.35).

Table 2.
Table 2.:
Patient and parent-reported outcome measures (n = 54)

As a group, adolescents’ scores on the PROMIS measures were not different from general population norms. The majority of adolescents had scores within 1 SD of general population means for all measures (Table 3). Very few adolescents had clinically important symptoms (≥ 1 SD) of depression (2%) and anxiety (4%) compared with general population norms. However, many adolescents had upper extremity function (26%) and mobility (46%) scores that were lower than general population norms at a median duration of symptoms of 8 months (range, 0.25–50 months). No comparison was made for adolescents’ coping measures (pain catastrophizing and pain self-efficacy scores) because of the lack of a published reference population.

Table 3.
Table 3.:
Detailed summary of PROMIS scores by patient self-reports in comparison to the US general population (n = 54)

Discussion

Adolescents with chronic illnesses and their parents often disagree on adolescents’ perceptions of function and coping, which impact recovery and type and quality of medical care, but these potential discrepancies have not been tested in adolescent athletes and their parents presenting to a sports medicine clinic. This is important because parents are involved in decisions regarding choice of medical treatment, rehabilitation, and return to sports. Overestimating emotional functioning and coping, for example, may lead parents to push for unnecessary medical procedures for pain or difficulties returning to sports when, in fact, these can be the result of psychosocial functioning. It is known that psychologic symptoms play an important role in the perception of physical symptoms after injury, coping strategies, and physical function. It is also known that parents are important stakeholders because they may also be emotionally involved in the child’s participation in sports. The adolescent-parent dyad and the relationship between psychologic factors and physical symptoms, coping strategies, and physical function was yet unknown in adolescents with a sports-related injury. Identifying and understanding any discordance between adolescent self-report and parent proxy report of psychologic symptoms, coping, and physical function may provide the clinician direction for clinical decision-making and the evaluation of outcomes for improving patient care.

One important issue that limits the interpretation of this study is the absence of robust MCIDs for the instruments as we used them. Parents’ and adolescents’ scores were not different in terms of physical function, mobility, anxiety, and pain self-efficacy. However, as a group, parents rated their children as more depressed and engaging in less catastrophic thinking about pain than the adolescents themselves. It is important to mention that although we detected a statistical difference, the size of the difference was relatively small, particularly for PROMIS CAT Depression. In the absence of an MCID value, this result is difficult to interpret. A prior report identified that half of 1 SD (eg, 5 points) is an estimated MCID for the physical function CAT [7], whereas another found that the MCID is 6 points for PROMIS CAT Pain Interference [6], another measure of disability. The difference in our study was 4.5 points, which is 0.5 or 1.5 points below the estimated MCID. No MCID estimates exist for catastrophic thinking. The relatively small mean difference between parents and adolescents in this study should be interpreted in light of the fact that as a group, parents and adolescents rated youth as having scores that are comparable to those of the general population. Indeed, we found that only a few adolescents had scores higher (worse) than general population norms on depression and anxiety. Discrepancies would likely be larger when participants had more impaired scores than what we observed in this study.

Results of this study should be viewed in light of several other limitations. First, this study included adolescents aged 12 to 17 years with the majority between 15 and 17 years of age. Furthermore, the majority of athletes were white and had baseball-related injuries. As such, generalizability is limited. Nonetheless, this is the first study comparing adolescent and parent proxy reports of psychologic functioning after a sports-related injury and represents a starting point for future research and for improving adolescent patient care in sports medicine practices. Although proxy measures are typically used less frequently for older adolescents who are considered reliable reporters themselves, given that adolescent athletes still live with their parents and parents are actively involved in both medical care and return to sports, understanding the discordance in reports is important for improving clinical care. Several studies in adolescents with chronic pain and mental health conditions are using proxy reports for similar reasons [14, 26]. Because pain ratings in the present study were relatively low (1.8 ± 2.2), our findings may underestimate reality. Parents were primarily mothers. Although no differences in discordance were observed between dyads with mothers and fathers, results may be different when parents are fathers, because we may have been underpowered on that comparison. In addition, chronicity of the orthopaedic condition was not examined, and there was a wide range of symptom duration in our population (1 week to 50 months). Although we found no association between pain duration and our main outcomes in this sample, we believe that future studies should examine the potential role of injury acuity on differences in parent-child perceptions of wellness.

The discordance in depressive symptoms between adolescents and parents found in our study is in line with two previous research studies [17, 33]. Lewis and colleagues [17] reported that parents tend to overrate adolescents’ depressive symptoms. In addition, Varni and colleagues [33] demonstrated high discordance in depressive symptoms between adolescent reports and parent proxy reports in general pediatric clinics, in which parents also rated adolescents as more depressed than the adolescents themselves. As depicted, the absence of an MCID score for PROMIS CAT limits us from being able to conclude as to whether this discrepancy is clinically meaningful. However, we do recommend that clinicians consider administering PROMIS depression and proxy to adolescent and parent dyads and compare their scores. A discrepancy of at least 4 points should lead to a conversation, which can also be done by a nurse or medical assistant, that may give important information on whether the discrepancy is clinically relevant. This can also give parents and adolescents the opportunity to align their perceptions, which can benefit recovery.

In our study, parents overestimated adolescents’ ability to deal with pain by rating them lower than the adolescents themselves on catastrophic thinking about pain. Previous studies on catastrophic thinking about pain in adolescent-parent dyads do not confirm our results [9, 22, 27, 34]. In these studies that included parents of children with chronic diseases such as sickle cell disease [27], diabetes [34], and functional abdominal pain [9], parents provided higher proxy ratings for their adolescents’ catastrophic thinking about pain compared with the adolescents themselves. This difference in finding seems to be population-specific. Parents of athletes may view them as better able to cope with pain as a result of their participation in athletics, which is, at least anecdotally, associated with overall toughness [21, 37]. Although the small magnitude of difference in ratings between parents and adolescents is higher than for depression (4.5 points), and the effect size is large, the lack of MCID limits our ability to make concrete statements about the clinical utility of these results. We recommend that clinicians resolve any potential discrepancies in ratings along with their patients during the medical visits, particularly when these discrepancies are > 4.5 points.

The findings regarding the direction of the discordance for depression and catastrophic thinking are somewhat counterintuitive. They may a spurious effect as a result of the relatively small sample or attributable to the different way in which depression and catastrophic thinking manifest and can be observed by parents. Specifically, depression has behavioral elements (such as increased sleep and appetite in adolescents, decreased social interest, isolation), which are observable to patients who live in the same house with the adolescents; adolescents themselves may not have the insight to see these changes in themselves. The PCS is a purely cognitive measure (such as worries about pain) with no direct behavioral correlate. Parents may thus have less of a clue with regard to how the adolescents are thinking about their condition.

No difference was found for adolescent and parent proxy reports on upper extremity function, mobility, pain self-efficacy, or anxiety symptoms. This suggests that there are no discrepancies for upper extremity physical function such as pulling a shirt overhead or lifting a cup to drink and mobility-related tasks such as riding a bike or doing sports and exercise that other kids their age do. This is consistent with previous research from Varni and colleagues [33] who reported no discrepancies in items measuring variables such as physical functioning (upper extremity function and mobility) in adolescents presenting to a general pediatric clinic. In addition, no difference was seen in pain self-efficacy scores, indicating that there are no discrepancies in the assessment of self-efficacy for functioning when in pain. This was also seen by Bursch and colleagues [8] who reported no difference in self-efficacy of patient and parent proxy reports in children with chronic pain. This finding suggests that assessing discordance in self-efficacy may not be as important as assessing depression and PCS. Lastly, no difference was seen in reporting anxiety symptoms in our study. This is inconsistent with previous studies that showed that parents tend to overreport adolescents’ anxiety symptoms [18, 33]. This finding may be the result of the small sample size and should be evaluated in future studies.

Our findings have implications for clinical care. Results of this study, combined with prior research [1, 5, 6, 8, 9, 15], suggest that a dyadic approach to assessing functioning in adolescents presenting to sports medicine practices may be useful. The potential discordance in ratings, when identified, could improve clinical care and help families work together toward the common goal of recovery and return to sport. Providers should keep in mind that parents may have a tendency to overestimate depressive symptoms and underestimate the catastrophic thinking about pain in their children. Orthopaedic surgeons can normalize the discrepancy by acknowledging the high level of stress associated with an orthopaedic intervention and encourage an open conversation about the discordant items endorsed by the dyads on relevant questionnaires using empathic and compassionate language. This in-depth conversation can help identify the sources of the discrepancy, align ratings, and allow for providing educational information and, when necessary, referrals for evidence-based psychologic interventions for the adolescent or for the entire family. The ultimate goal is to align perceptions of adolescents and parents and, through this, improve clinical care, success of rehabilitation, and promote return to sport.

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