Abstract
Objective:
An extensive body of research has highlighted the impact that parent/caregiver factors have on functioning and treatment outcomes among youth with chronic pain. However, parent/caregiver expectations in pain treatment have been largely understudied, despite strong evidence that treatment expectations are associated with treatment engagement and overall outcomes in non-pain populations. Accordingly, the primary aim of this investigation was to preliminarily examine the manifestation and measurement of parent/caregiver treatment expectations in an intensive interdisciplinary pediatric pain treatment (IIPT) setting.
Methods:
Participants in this study (N=328) included children and adolescents who attended an intensive interdisciplinary pain treatment (IIPT) program for chronic pain between August 2013 and March 2020 and their parent/caregiver(s). Outcomes examined include parent/caregiver self-report of treatment expectations for their child upon admission to the IIPT in addition to pain-related and psychosocial factors at admission and discharge.
Results:
Findings revealed a high level of expectations (i.e., belief that the treatment will be helpful) on average, with higher parent/caregiver expectations associated with poorer functioning at admission to and discharge from the IIPT program.
Conclusion:
Extremely high treatment expectations among parents of more disabled youth may be indicative of unrealistic hopes or the “need” for IIPT to help their child; tempering parental expectations with psychoeducation about IIPT goals and realistic outcomes may indirectly improve treatment outcomes for their children. Future research should examine the potentially unique and important role that treatment expectations, of both parent/caregivers and their children, may have in overall IIPT outcomes.
Keywords: Pediatric Pain Rehabilitation, Parent/Caregiver Expectations, Treatment Response
Introduction
An extensive body of research has highlighted the impact that parent/caregiver factors (henceforth, referred to as “caregiver” for inclusivity and simplicity), including caregiver pain catastrophizing, caregiver pain, caregiver mental health functioning, and caregiver adverse childhood experience (ACE; abuse/neglect), can have on functioning and treatment outcomes among youth with chronic pain [1–5]. Previous research has proposed that the effect caregiver factors have on youth’s responses to pain treatment may be explained by modeling and social learning [1], pointing to the possibility that a caregiver’s expectations regarding their child’s treatment response may affect how their child approaches and subsequently responds to pain treatment. However, this factor has been largely understudied in pediatric pain populations. The lack of research on the role of caregiver expectations on pain treatment outcomes among youth is notable given evidence suggesting a significant subset of youth do not fully respond to pain treatment [6, 7]; this understudied factor may explain part of the variability in youths’ responses to pain treatment.
Outside of pediatric pain, the role of expectations in health-related treatment has been widely studied. Historically, research in adults suggests that expectations for treatment-related outcomes are highly related to treatment engagement and long-term prognosis (e.g., severity of illness, treatment drop-out, etc.) [8]. Among adult patients with chronic pain in particular, recent research confirms these findings, suggesting that adult patients who expect more positive outcomes prior to the initiation of treatment (e.g., multidisciplinary, psychosocial, physical therapy) generally respond more robustly to treatment and have better long-term outcomes than patients with lower expectations [9–12]. Of the few studies exploring the role of health-related treatment expectations among youth, the majority pertain to placebo/nocebo effects upon pain thresholds. For example, preliminary evidence suggests that high anxiety and low hope for treatment effects were associated with a stronger nocebo effect in healthy youth exposed to a painful stimulus [13]. However, no known studies have examined the role that caregiver expectations may have on pediatric pain treatment outcomes.
The primary aim of this investigation was to preliminarily examine the manifestation and measurement of caregiver treatment expectations in an intensive interdisciplinary pediatric pain treatment (IIPT) setting. Due to the lack of existing validated measures of caregiver expectations, this involved 1) ascertaining reliability estimates of a caregiver expectation measure initially constructed for clinical use in IIPT and 2) examining the nature of caregiver expectations (e.g., type of expectation, frequency of certain expectations) at IIPT admission. This study also explored the cross-sectional associations between caregiver expectations at IIPT admission and the clinical presentation of youth as they began IIPT, as well as assessed the associations between caregiver expectations for treatment at IIPT admission and youth outcomes at IIPT discharge. Based on the limited evidence from prior studies, we hypothesized that caregiver treatment expectations at IIPT admission would be predictive of treatment response among youth at IIPT discharge. More specifically, we hypothesized that more positive caregiver expectations (e.g., belief that the treatment would be helpful) at admission would be associated with better treatment response among youth at IIPT discharge.
Methods
Participants and Procedures
Participants in this study (N=328) included children and adolescents who attended an intensive interdisciplinary pain treatment (IIPT) program for chronic pain between August 2013 and March 2020 and their caregivers. The IIPT was located at a tertiary hospital in the Northeastern United States. Eligibility for participation in the IIPT program, and thus, for this study, included pain chronicity of at least three months prior to admission, moderate or severe disability that inhibited daily functioning, failure to improve in outpatient physical therapy and psychology treatment, and stable psychiatric status (i.e., no active suicidality or need for inpatient intervention for acute psychological or medical care).
Upon admission (henceforth referred to as “Time 1”) and discharge (henceforth referred to as “Time 2”) from IIPT, patients and their caregivers completed several clinical measures and evaluations, either online via REDCap (Research Electronic Data Capture) or via paper and pen. Specifically, patient measures were administered via paper/pen until 2015 when data collection transitioned to REDCap. On occasion, patient measures were still administered via paper/pen after 2015 if requested by the patient or for clinical or logistical purposes. The caregiver expectation measure was always administered via paper and pen for the duration of this study. While attending IIPT, the patient and caregiver were approached by a research assistant to discuss if their responses on the clinical measures and evaluations could be used for research purposes, separately from their current clinical purposes, as a part of an IRB-approved longitudinal and retrospective data registry (IRB-P00015943). If interested, the patient and caregiver(s) were assented/consented by a trained research coordinator and their data was added to the data registry.
Intensive Interdisciplinary Pain Treatment Program
The IIPT program featured in this study utilizes the biopsychosocial model in a day-hospital rehabilitation center to treat children and adolescents with chronic pain. Patients attend the program Monday through Friday for eight hours per day, for approximately 3 to 6 weeks. Patients receive daily physical therapy, occupational therapy, and psychology treatment and auxiliary therapies on a weekly basis (i.e., recreational therapy, music therapy), as well as daily meetings with the nursing/medical team. Treatment modalities include individual, group, and family formats. In addition to family sessions that caregivers attend with their child, caregivers also receive additional weekly support and education through support groups and individual sessions with the IIPT’s social worker, as well as individual sessions with the medical team. The treatment model and outcomes have been described in depth in previous publications [14, 15].
Questionnaires
Participant demographics and health-information.
Patient demographic information (i.e., age, gender, pain characteristics such as duration and typical, average, and worst pain intensity ratings measured via numeric rating scale) was collected as a part of their admission paperwork prior to beginning IIPT and/or was extracted from the patient’s medical chart.
Caregiver treatment expectations.
Caregiver treatment expectations were examined using a measurement system adapted for use in the IIPT (the Pediatric Pain Rehabilitation Center: PPRC) from the validated Treatment Evaluation Inventory – Short Form [16]. Caregivers were asked to rate nine expectations regarding their child’s treatment on a five-point Likert-type scale ranging from 1 (“not at all likely”) to 5 (“extremely likely”). Examples of items include, “How likely is it that treatment at the PPRC will help my child have less pain?”, “How likely is it that the treatment at the PPRC will help my child cope with pain?”, and “How likely is it that the treatment at the PPRC will help my family have less stress?” For the purposes of the current study, a total sum (ranging from 9–45) was derived to provide an overall indication of whether caregivers trended towards higher (i.e., higher scores) or lower (i.e., lower scores) expectations across areas. See Appendix I for the caregiver treatment expectations measure.
Functional disability.
The Functional Disability Inventory (FDI [17]) is a 15-item self-report measure that assesses activity limitations in children and adolescents with a variety of pediatric conditions. Participants rated their perceived difficulty within the past two weeks with performance of daily activities (e.g., “walking to the bathroom” and “being at school all day”). The FDI uses a five-point Likert-type scale, ranging from 0 (“not true at all”) to 4 (“impossible”). Individual items are summed for a total score (ranging from 0–60), with higher scores indicating greater disability. The FDI has been validated in children and adolescents with various chronic pain conditions and demonstrated good internal consistency in the current participant sample at both Time 1 and Time 2 (α=0.85 and α=0.86, respectively).
Pain-related distress.
The Pain Catastrophizing Scale (PCS [18]) is a 13-item self-report measure that assesses an individual’s negative thoughts and beliefs about their pain experience. Participants rated the items (e.g., “When I am in pain, I keep thinking about how much it hurts” and “When I am in pain, I am afraid that the pain will get worse”), on a five-point Likert-type scale ranging from 0 (“not true at all”) to 4 (“very true”). Individual items are summed for total score (ranging from 0–54), with higher scores indicating more catastrophizing thoughts. The PCS has been validated within a general pediatric chronic pain population and its total score demonstrated excellent internal consistency at Time 1 and Time 2 (α=0.93 and α=0.92, respectively) in the current sample.
The Fear of Pain Questionnaire-Child report (FOPQ-C [19]) is a 24-item self-report measure that assesses pain-related fears and avoidance behavior in children and adolescents with chronic pain conditions. Participants rated the items (e.g., “I can’t do all the things normal people do because it’s so easy to hurt my body” and “I stop any activity if I start to hurt or my pain becomes worse”) on a five-point Likert-type scale ranging from 0 (“strongly disagree”) to 4 (“strongly agree”). Individual items are summed for a total score (ranging from 0–96), with higher scores indicating higher levels of pain-related fear and avoidance. The FOPQ-C total score demonstrated excellent internal consistency at Time 1 and Time 2 (α=0.93 and α=0.94, respectively) in the current sample.
Psychosocial functioning.
Anxiety Symptoms.
The Multidimensional Anxiety Scale for Children Second Edition (MASC-2 [20, 21]) was used to assess anxiety symptoms from 2013 to 2018 before transitioning to the Patient-Reported Outcomes Measurement Information System: Pediatric Short Form v2.0-Anxiety 8a (PROMIS-Anxiety [22]). The MASC-2 is a 50-item self-report measure that assesses anxiety symptoms in children and adolescents. Participants rated how frequently they endorse each item in terms of recent functioning (e.g., “I worry about what other people think of me” and “I feel restless and on edge”) on a four-point Likert-type scale ranging from 0 (“never”) to 3 (“often”). Items are summed to calculate a MASC-2 Total score, which can then be translated into a corresponding T-score. T-scores greater than 60 are considered clinically significant (60–64 = Slightly Elevated; 65–69 = Elevated; >70 = Very Elevated). In the current sample, internal consistency was excellent (α=0.94 at both Time 1 and Time 2).
The PROMIS-Anxiety is an eight-item self-report measure that assesses anxiety in children and adolescents. Participants rated the items (e.g., “I felt like something awful might happen” and “I worried when I went to bed at night”) in the context of the past seven days. The PROMIS-Anxiety uses a five-point Likert-type scale ranging from 1 (“never”) to 5 (“almost always”). Scores are totaled to determine the raw score, which is translated into a T-score. T-scores greater than 50 are considered clinically significant (50–55 = Mild; 55–65 = Moderate; >65 = Severe). The PROMIS-Anxiety shows good construct validity and is responsive to change in pediatric musculoskeletal chronic pain populations [23]. In the current sample, internal consistency was excellent (α=0.93 at Time 1, α=0.94 at Time 2).
To address the fact that some participants completed the MASC-2 while others completed the PROMIS-Anxiety to assess anxiety symptoms, T-scores from each measure were used and collapsed into one ‘Anxiety Symptoms T-score’ variable (M=50, SD=10) for the current study. T-scores of </=40–59 are considered within the average range, with higher scores indicating increased anxiety symptoms. The results of independent samples t-tests did not reveal significant differences between MASC-2 and PROMIS scores at both Time 1 and Time 2 (p’s > .05).
Depressive Symptoms.
The Children’s Depression Inventory −2 (CDI-2 [24]) was used to assess patients’ depressive symptoms from 2013–2018 until transitioning to the Patient-Reported Outcomes Measurement Information System: Pediatric Short Form v2.0-Depressive Symptoms 8a (PROMIS-Depression [22]). The CDI-2 is a self-report questionnaire that assesses depressive symptoms in children and adolescents. The inventory is made up of 28 items, and each item presents three statements of increasing symptomatology between which the participant must choose. The items are scored 0 to 2, with a total possible raw score of 54. The raw scale score is translated into a corresponding T-score, with higher T-scores indicating greater levels of depressive symptoms. The CDI-2 is a widely used measure to assess depressive symptoms in youth and has good reliability (α = 0.88) in prior studies (e.g., Chow et al., 2016 [1]). In the current sample, internal consistency was excellent (α=0.91 at Time 1, α=0.90 at Time 2).
The PROMIS-Depression is an eight-item self-report measure that assesses depressive symptoms in children and adolescents. Participants rated items (e.g., “I could not stop feeling sad” and “It was hard for me to have fun”) in the context of the past seven days. The PROMIS-Depression uses a five-point Likert scale ranging from 1 (“never”) to 5 (“almost always”). Scores are totaled to determine the raw score, which is then translated into a T-score. T-scores greater than 50 are considered clinically significant (50–55 = Mild; 55–65 = Moderate; >65 = Severe). The PROMIS-Depression shows good construct validity and is responsive to change in pediatric musculoskeletal chronic pain populations [23]. In the current sample, internal consistency was excellent (α=0.95 at both Time 1 and Time 2).
To address the fact that some participants completed the CDI-2 while others completed the PROMIS-Depression to assess depressive symptoms, t-scores from each measure were used and collapsed into one ‘Depressive Symptoms T-score’ variable (M=50, SD=10) for the current study. T-scores of </=40–59 are considered within the average range, with higher scores indicating increased depressive symptoms. The results of independent samples t-tests at Time 1 and Time 2 did not reveal significant differences between CDI-2 and PROMIS scores (p’s ≥ .05).
Data Analyses
Data were analyzed using SPSS v. 24 [25, 26]. To begin, the consistency of the caregiver expectations measure in the current participant sample was explored via reliability statistics (i.e., Cronbach’s alpha, item-total correlations). Following this, the nature of caregiver expectations (e.g., type of expectations, most common expectations, least common expectations) at Time 1 was examined via measures of frequency. To examine the association between caregiver expectations and youth’s functional disability, pain-related distress, and psychological functioning, Pearson product moment correlations were run between the summed caregiver expectation score (measured at Time 1) and youth report on measures of functional disability, pain intensity, pain catastrophizing, fear of pain, anxiety symptoms, and depressive symptoms at Time 1.
Individual items on the measure (i.e., considering each of the nine caregiver expectations as separate data points) at Time 1 were examined via a series of multivariate analysis of variance (MANOVA) in association with Time 1 youth factors. MANOVA models were used to assess cross-sectional relations between individual caregiver expectations and child pain-related factors over ANOVAs due to the high correlation between all outcomes.
Finally, caregiver expectations (total score) at Time 1 as a predictor of youth IIPT outcomes at discharge from the program (Time 2) were initially examined via linear mixed modeling (LMM), a flexible approach that is used to examine repeated measures with fixed and random factors [27, 28]. It has been utilized successfully in previous longitudinal investigations in pediatric pain samples [29, 30]. For the current analyses, data were transformed into long format with repeated measures combined into one variable, denoted by time point. Fixed factors were identified in the model as “Time” (i.e., Time 1 and Time 2), with caregiver expectations at Time 1 (summed score) as main effects and time*caregiver expectations as the interaction effect. Consistent with the cross-sectional analyses at Time 1, youth Time 2 outcomes included measures of functional disability, pain catastrophizing, fear of pain, anxiety, and depression.
Results
Participant characteristics
Participants in the current study ranged in age from 8 to 18 years (M=14.05, SD=2.38). The majority of the sample identified as female (77.7%), with 22% identifying as male and 0.3% identifying as non-binary. Regarding race/ethnicity, 86.9% of the sample was White, 1.5% Asian, 1.5% Black, 1.5% Hispanic and 2.4% Other. Race/ethnicity was either not known or not reported by the remaining 6.1% of the sample. At Time 1, the average pain duration was slightly over two years (M=26.43 months, SD=29.05). The primary diagnosis of the sample was complex-regional pain syndrome (CRPS, 27.7%), followed by musculoskeletal pain (24.1%), headache (22.4%), abdominal pain (12.4%), and neuropathic pain (10.7%); other diagnoses (e.g., chronic fatigue, functional neurological disorder) made up the remaining 2.7% of the sample. The median length of IIPT admission was five weeks (IQR = 4–6). Complete details on participant characteristics are included in Table 1.
Table 1.
Youth Characteristics and Descriptive Data.
| N (%) | Admission M (SD) | Discharge M (SD) | |
|---|---|---|---|
| Gender | - | - | |
| Female | 255 (77.7%) | ||
| Male | 72 (22.0%) | ||
| Non-Binary | 1 (0.3%) | ||
| Race/Ethnicity | - | - | |
| Caucasian/White | 285 (86.9%) | ||
| African American/Black | 5 (1.5%) | ||
| Asian | 5 (1.5%) | ||
| Hispanic | 5 (1.5%) | ||
| Other | 8 (2.4%) | ||
| Not known or specified | 20 (6.1%) | ||
| Diagnosis | - | - | |
| Chronic-regional pain syndrome | 91 (27.7%) | ||
| Musculoskeletal Pain | 79 (24.1%) | ||
| Headache | 74 (22.6%) | ||
| Abdominal Pain | 40 (12.2%) | ||
| Neuropathic Pain | 35 (10.7%) | ||
| Other | 9 (2.7%) | ||
| Age, years | - | 14.05 (2.38) | - |
| Pain Duration, months | - | 26.43 (29.05) | - |
| Length of Stay, weeks * | - | - | 5 (4 – 6) |
| Functional Disability (0–60) | - | 27.84 (10.33) | 11.63 (7.77) |
| Fear of Pain (0–96) | - | 49.13 (19.24) | 24.05 (17.42) |
| Pain Catastrophizing (0–52) | - | 26.54 (12.34) | 14.41 (10.29) |
| Anxiety (T-Score) | - | 54.28 (12.74) | 49.86 (11.62) |
| Depressive Symptoms (T-Score) | - | 58.91 (12.47) | 51.35 (10.92) |
Note:
Indicates Median (IQR).
Clinical picture of caregiver expectations at IIPT admission
Reliability analyses indicated that the caregiver treatment expectations measure (administered at Time 1) showed excellent internal consistency reliability in the current sample (α = .91). Examination of item-total statistics indicated no improvement in internal consistency (i.e., Cronbach’s alpha did not increase) with the removal of any individual item; in fact, it decreased. Individual corrected item-total correlations ranged from 0.57 to 0.78. In this sample, the mean total score was 35.48 (SD = 6.33), with a range of 15–45 (out of a possible 9–45). Individual item scores and the total score were normally distributed across the sample (i.e., all skewness and kurtosis values were < absolute value of 1.0).
Descriptive statistics of the nine individual items on the measure (i.e., individual caregiver treatment expectations) revealed that, on average, caregivers commonly felt that IIPT was at least “likely” (a score of 3 out of 5 on the Likert scale) to be helpful across all domains. Upon examination of mean scores on the measure’s individual items on the measure, it was found that, at Time 1, the lowest average caregiver expectation scores were related to the program’s ability to help the patient’s family communicate better (Mscore = 3.55, SD = .977), to help the patient have less pain (Mscore = 3.71, SD = 1.035), and to help the patient’s family have less stress (Mscore = 3.73, SD = .906). The highest caregiver expectations scores were related to the usefulness of the program for parents/caregivers of children with chronic pain (Mscore = 4.29, SD = .735), the helpfulness of the program with managing my child’s chronic pain (Mscore = 4.29, SD = .737), and the helpfulness of the program for helping my child cope with pain (Mscore = 4.18, SD = .786). See Table 2 for detailed frequency analyses of individual items on the caregiver expectation measure.
Table 2.
Caregiver Treatment Expectations by Item
| Item Likelihood that the treatment will… | % Endorsing Not at all Likely (NL) | % Endorsing Somewhat Likely (SL) | % Endorsing Likely (L) | % Endorsing Very Likely (VL) | % Endorsing Extremely Likely (EL) |
|---|---|---|---|---|---|
| 1. Be useful for parents of children with chronic pain | 0.0 | 1.2 | 12.9 | 41.5 | 44.3 |
| 2. Be helpful overall in managing the patient’s chronic pain | 0.0 | 1.6 | 12.1 | 42.2 | 44.1 |
| 3. Help the patient have less pain | 1.6 | 13.4 | 22.7 | 37.3 | 25.2 |
| 4. Help the patient participate in more activities | 0.3 | 2.8 | 17.2 | 44.3 | 35.4 |
| 5. Help the patient feel happier | 0.0 | 6.2 | 18.5 | 44.4 | 30.9 |
| 6. Help the patient cope with pain | 0.0 | 2.5 | 16.0 | 42.5 | 39.1 |
| 7. Help the patient’s family have less stress | 0.0 | 10.7 | 26.1 | 42.9 | 20.2 |
| 8. Help the patient’s family communicate better | 1.9 | 13.6 | 28.4 | 40.1 | 16.0 |
| 9. Likelihood of recommending the treatment | 0.0 | 2.1 | 12.2 | 39.6 | 46.2 |
Pearson correlation results indicated that overall caregiver expectations (total score) were significantly and positively associated with youths’ functional disability and fear of pain but not with youth pain catastrophizing, anxiety, or depressive symptoms at Time 1. Specifically, higher caregiver treatment expectations were associated with increased youth functional disability and pain-related fear/avoidance at Time 1. Total caregiver expectations were not associated with Time 1 pain intensity (neither “current”, “average”, or “worst” pain ratings) or pain duration, although the latter trended towards significance (p = .063). See Table 3 for complete Pearson correlation coefficient matrix.
Table 3.
Correlations between Caregiver Treatment Expectations and Youth Variables at Admission (Time 1)
| 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | |
|---|---|---|---|---|---|---|---|---|---|
| 1. Caregiver Expectations Total | .127* | .106 | .123* | .075 | .088 | .010 | .018 | .021 | -.104 |
| 2. Functional Disability (FDI) | - | .315** | .424** | .295** | .335** | .321** | .368** | .301** | -.163** |
| 3. Pain Catastrophizing (PCS) | - | - | .812** | .508** | .536** | .176** | .158** | .129* | -.027 |
| 4. Pain-Related Fear (FOPQ-C) | - | - | - | .552** | .608** | .074 | .061 | .102 | .037 |
| 5. Anxiety Symptoms | - | - | - | - | .659** | .040 | -.008 | .001 | .074 |
| 6. Depressive Symptoms | - | - | - | - | - | .077 | .069 | .096 | .060 |
| 7. Pain Intensity: Current | - | - | - | - | - | - | .854** | .596** | -.240** |
| 8. Pain Intensity: Average | - | - | - | - | - | - | - | .693** | -.188** |
| 9. Pain Intensity: Worst | - | - | - | - | - | - | - | - | -.123* |
| 10. Pain Duration | - | - | - | - | - | - | - | - | - |
Note:
p < 0.05
p < 0.01
Upon examining each item on the caregiver expectation measure separately, results from a series of MANOVA models demonstrated significant group differences across Time 1 youth variables by individual caregiver expectations. Most notably, children of caregivers who entered IIPT endorsing that it was either “very likely” or “extremely likely” that the program would 1. be helpful overall with managing their child’s chronic pain, 2. help their child have less pain, 3. help their child participate in more activities, and 4. help their family communicate better reported significantly higher functional disability (1. F(2) = 3.511, p < .05; 2. F(3) = 5.875, p < .01; 3. F(3) = 7.118, p < .001; 4. F(3) = 3.111, p < .05) at Time 1 than the children of caregivers endorsing the three remaining likelihood categories (e.g., “not at all likely”, “somewhat likely”, or “likely”) in each of these areas. Additionally, children of caregivers endorsing that it is “extremely likely” that the program would help their child have less pain reported significantly more pain-related fear and avoidance (F(3) = 3.242, p < .05) at Time 1 as compared to children of caregivers endorsing that it is “likely” that their child would have less pain. Finally, children of caregivers endorsing that it is “extremely likely” that the program would help their family communicate better reported significantly more pain-related catastrophizing (F(3) = 3.214, p < .05) at Time 1 as compared to children of caregivers endorsing that it is “likely” that the program would help in this way. Complete item-by-item results are outlined in Table 4.
Table 4.
Significant Differences in Youth Variables by Caregiver Treatment Expectations at Admission (Time 1)
| Item Likelihood that the treatment will… | df | F | p | η2p | Tukey post-hoc analyses |
|---|---|---|---|---|---|
| Be helpful overall in managing the patient’s chronic pain | |||||
| • Functional Disability (FDI) | 2 | 3.511 | <.05 | .025 | EL > L |
| Help the patient have less pain | |||||
| • Functional Disability (FDI) | 3 | 5.875 | <.01 | .060 | EL > SL & L |
| • Pain-Related Fear & Avoidance (FOPQ-C) | 3 | 3.242 | <.05 | .034 | EL > L |
| • Depressive Symptoms (CDI) | 3 | 2.699 | <.05 | .028 | n.s. |
| Help the patient participate in more activities | |||||
| • Functional Disability (FDI) | 3 | 7.118 | <.001 | .070 | EL & VL > L |
| Help the patient’s family to communicate better | |||||
| • Functional Disability (FDI) | 3 | 3.111 | <.05 | .033 | EL > VL |
| • Pain-Related Catastrophizing (PCS) | 3 | 3.214 | <.05 | .034 | EL > L |
| • Pain-Related Fear & Avoidance (FOPQ-C) | 3 | 2.966 | <.05 | .031 | n.s. |
Note: All other MANOVAs were not significant. EL = extremely likely, VL = very likely, L = likely, SL = somewhat likely.
Caregiver expectations as predictors of pediatric pain rehabilitation treatment outcomes
Caregiver expectations using the scale’s total score were examined as a predictor of treatment response in youth completing IIPT via linear mixed modeling (LMM). Time and caregiver expectations were examined as main effects and time*caregiver expectations was included as the interaction effect. No violations of model assumptions were found. For functional disability, results revealed significant main effects of time (F(1, 583) = 193.24, p<.001) and caregiver expectations (F(27, 583) = 1.574, p = .034) but an insignificant interaction effect (F(27, 583) = 0.863, p = .667). Findings were similar for all outcomes, revealing significant reductions in all outcomes by main effect but not interaction effect for fear of pain (time: F(1, 581) = 112.63, p < .001; caregiver expectations: F(27, 581) = 1.741, p = .012), pain catastrophizing (time: F(1, 581) = 66.671, p <.001; caregiver expectations: F(27, 580) = 1.575, p = .034), anxiety symptoms (time: F(1, 566) = 6.748, p = .010; caregiver expectations: F(27, 566) = 2.060, p = .001), and depressive symptoms (time: F(1, 562) = 27.302, p < .001; caregiver expectations: F(27, 562) = 2.008, p = .002).
Discussion
It is well-established that caregiver factors such as caregiver pain catastrophizing, caregiver responses to pain, etc., contribute to functional disability and treatment response among youth with chronic pain [31, 32]; however, little is known about how caregiver treatment expectations may relate to youth’s pain experiences. To fill this gap in the literature, this study sought to provide descriptive information regarding the nature and degree of caregiver expectations for IIPT at admission. Additionally, cross-sectional and longitudinal associations between caregiver treatment expectations and youth pain-related factors at IIPT admission and upon IIPT discharge were explored.
While some findings were in line with hypotheses, many of the results were unexpected and revealed interesting associations between caregiver treatment expectations and youth’s pain experiences and treatment response. As expected, caregivers were generally optimistic, rating the IIPT program featured in this study as “likely” to be helpful overall. In fact, 60–85% of caregivers rated the likelihood that the IIPT is “very likely” or “extremely likely” to be helpful across each type of expectation included on the measure. Given that IIPT is the highest level of care offered to youth severely disabled by pain and admission to IIPT typically occurs after extensive education about IIPT being the “gold standard” treatment for pediatric chronic pain [14, 15, 33], it is not surprising that caregiver expectations for treatment effectiveness would be high. Anecdotally, many caregivers share at the start of the program featured in this study that “this is our last resort” as their child has typically not responded to outpatient level of care (e.g., physical therapy, psychological treatment) prior to their IIPT admission.
Interestingly, findings indicate that children with caregivers who reported that IIPT is “extremely likely” to be helpful endorsed more pain-related disability and distress at admission than children with caregivers with more tempered expectations (e.g., “likely” or “very likely”). Specifically, caregivers with more disabled and distressed children were more likely to endorse high expectations about the program’s ability to help them manage their child’s pain, their child having less pain, their child being more functional after treatment, and their family’s communication improving due to participation in IIPT. There was no difference, however, in youth’s pain severity or chronicity regardless of caregiver expectations. It is possible that observable indicators of pain’s impact on their child’s life (e.g., disengagement from their lives, avoidance of doing activities that may cause pain, strained family dynamics) may result in more distress for caregivers, leading them to endorse higher levels of treatment expectations. In other words, these caregivers may need the program to work for their child and family.
Counter to hypotheses, findings from longitudinal analyses indicated that higher caregiver treatment expectations were significantly associated with poorer pain-related and psychosocial functioning for their children at admission and that these associations remained at discharge. This is particularly notable given the main effect of Time in LLM analyses, demonstrating that the overall sample reported significant improvements in functioning, pain-related distress, and anxiety and depression at IIPT discharge. Thus, it is possible that, because youth with caregivers holding higher treatment expectations were more disabled and distressed by pain at admission, this finding is primarily driven by youth’s characteristics at admission. Namely, youth who initiated IIPT with more functional difficulties and pain-related distress may benefit less from treatment when compared to youth who had caregivers with lower or more moderate treatment expectations and simultaneously were less disabled and distressed by pain.
Alternatively, findings may suggest that extremely high caregiver treatment expectations at the start of IIPT may connote risk for poorer treatment response among their children. Although this measure sought to assess caregiver expectations, for caregivers who tended toward extreme ratings of expectations (“extremely likely”), the measure may have instead captured caregiver “hope” for treatment effectiveness rather than realistic treatment expectations. Indeed, hope and expectations are conceptually linked and are both future-oriented cognitions. However, expectations are driven by an individual’s probability-driven assessment of the most likely outcome, while hopes are assessments of preferred or desirable but not necessarily probable outcomes [34]. Although caregivers’ ratings for IIPT’s expected effectiveness may be informed by what providers tell them about the program prior to enrollment, their own research about the particular program or IIPTs more generally (e.g., via peer-reviewed manuscripts, content included on IIPT websites, social media), or personal anecdotes detailing positive IIPT outcomes (e.g., from families who previously attended the IIPT), “extremely likely” ratings may represent lofty expectations that are conflated in order to reduce the cognitive dissonance that occurs when expectations are discrepant from one’s hopes [34].
Given that unmet expectations are often associated with unresolved symptoms, poorer adherence with treatment, and lower satisfaction with care (e.g., [35]), it is possible that extremely high hopes or unrealistic caregiver expectations may negatively impact their child’s treatment response. Research has demonstrated that caregiver emotions and behaviors play a role in children’s pain experiences [36]. Thus, caregivers with extremely high treatment expectations may demonstrate unhelpful emotional or behavioral responses when their child progresses or fails to progress in IIPT, which may then negatively impact their child’s response to treatment. For example, a child may struggle to progress in treatment when their caregiver over-praises and awards their accomplishments and/or appears withdrawn, anxious, or upset when their child is unable to complete a task. Additionally, children of caregivers with extremely high expectations/hope may also hold their own unrealistic expectations and/or feel pressure for the program to be effective, which may negatively impact their engagement in and response to IIPT. However, prior research has shown that caregiver and youth expectations for pain treatment are not always aligned [37]. Future research should assess if/how youth’s expectations of treatment effectiveness is related to their own treatment outcomes, determine the impact of caregiver expectations and hopes on youth’s expectations/hopes for IIPT effectiveness, and explore the process by which caregiver and youth treatment expectations impact youth’s response to IIPT.
This study’s findings have important research and clinical implications. First, although the measure demonstrated strong internal reliability consistency, it is not a validated instrument. Future research should either determine whether this measure holds against rigorous psychometric testing and/or should seek to develop validated instruments for assessing IIPT treatment expectations. Future research should explore how caregiver pain-related distress may mediate relations between caregiver treatment expectations and their child’s pain-related disability/distress and IIPT response.
Clinically, these findings highlight the importance of assessing and addressing treatment expectations at the start of IIPT. Results indicated that higher levels of caregiver expectations, specifically “extremely high” expectations, were associated with more youth pain-related disability and distress at both IIPT admission and discharge, Thus, ensuring that patients and their caregivers adopt realistic expectations of treatment may be especially important for medically complex chronic conditions such as pediatric chronic pain [38]. The initial evaluation may be an opportune time for clinicians to provide psychoeducation that adjusts treatment expectations so that they are more reasonable and moderate. However, information provided should also encourage caregiver and youth willingness to engage in IIPT and maintain hope, an important predictor of adjustment for pediatric patients with chronic pain [39]. For example, clinicians can provide empirical data that supports IIPT as the gold standard of chronic pain treatment in youth, while also sharing research that demonstrates its potential limits in effectiveness and dispels the myth that IIPT is the “last resort” treatment for children with chronic pain. Furthermore, IIPTs primary goal of improving functioning rather than eliminating pain should be emphasized.
Several limitations of the study bear noting. As previously indicated, although the measure used in this study was designed to clinically assess caregiver treatment expectations and demonstrated strong internal consistency reliability, it is not a standardized or validated measure. Additionally, two different measures were used to assess both anxiety and depressive symptoms (and were collapsed using T-scores) because of the clinic’s decision to change the way it assessed psychological symptoms midway through this study’s time frame. This study also examines a demographically homogenous sample of patients from a single day treatment program at one tertiary hospital, thus, limiting generalizability of findings. Further, demographics for the caregivers, such as age, gender, role within the family, and so forth were not collected. However, it is important to note that the study sample is representative of youth commonly served in day treatment programs for pediatric chronic pain [40]. Our findings may also not be generalizable to youth with less severe pain conditions.
Future research may consider examining how caregiver treatment expectations shift across time, from when their child engages in outpatient pain interventions to when they initiate more intensive pain treatment. Research could also explore if/how caregiver expectations for IIPT effectiveness shifts as their child participates in the program. Finally, this study sought to determine the role of caregiver treatment expectations on their child’s pain experiences and treatment response; however, data on patients’ expectations would have allowed for exploration of how the youth treatment expectations aligned with or were discrepant from those of their caregiver and if their expectations differentially impacted treatment response.
In sum, this is the first known study to provide descriptive information about the types and frequencies of caregiver expectations at admission to IIPT and to explore how caregiver expectations may be associated with their child’s pain experience and IIPT response. Preliminary results indicated that caregivers with higher expectations for treatment outcomes tended to have youth with poorer outcomes at admission to and discharge from IIPT. However, prior research indicates that caregiver and youth treatment expectations may not always align. As such, future research should continue to investigate the impact that expectations have on treatment response as a predictor and potential modifying factor in optimizing outcomes.
Supplementary Material
Funding Source:
National Center for Complementary and Integrative Health-NCCIH 1K23AT010643 (to Dr. Nelson).
APPENDIX
Caregiver Treatment Expectancies Questionnaire
Please read items below very carefully. Please complete each item below by circling the answer to each question that best indicates your expectations for this treatment.
| 1. How likely is it that treatment at the PPRC will: | ||||
| a. Be useful for parents/caregivers of children with chronic pain | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
| b. Be helpful overall with managing my child’s chronic pain | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
|
| ||||
| 2. How likely is it that treatment at the PPRC will help my child: | ||||
| a. Have less pain | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
| b. Participate more in activities | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
| c. Feel happier | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
| d. Cope with pain | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
|
| ||||
| 3. How likely is it that treatment at the PPRC will help my family: | ||||
| a. Have less stress | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
| b. Communicate better | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
|
| ||||
| 4. How likely am I to recommend the PPRC to a friend who has a child with chronic pain? | ||||
| Not at all likely | Somewhat likely | Likely | Very likely | Extremely likely |
Footnotes
Financial Disclosure: The authors have no financial or other conflicts of interest to report in relation to this study.
Conflict of Interest: None.
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