Photographs of Daily ActivitiesYouth English: validating a targeted assessment of worry and anticipated pain

Simons, Laura E.a,*; Pielech, Melissab; McAvoy, Shannonc; Conroy, Caitlinc; Hogan, Melindad; Verbunt, Jeanine A.e; Goossens, Marielle E.e,f

doi: 10.1097/j.pain.0000000000000855
Research Paper

Abstract: PHODA is an electronic measure that individualizes and guides treatment for individuals with chronic pain. Implicit in its design is recognition that pain-related fear is a driving force that impedes treatment progress. With this tool, patients visually rate their expectations about the harmful consequences of specific movements. This study aimed to (1) develop and validate PHODA-Youth English (PHODA-YE) and (2) evaluate the potential impact of PHODA-YE assessment on treatment outcomes. Participants were 195 youth, age 8 to 20 years, who presented to an outpatient pain clinic for evaluation (n = 99), or enrolled at the Pediatric Pain Rehabilitation Center (PPRC) intensive program (PPRC; n = 96). All patients completed the PHODA-YE along with measures of emotional functioning and disability. Patients in the PPRC completed the measure at both admission and discharge. After eliminating infrequently endorsed and poorly loading items, factor analytic procedures yielded a 4-subscale, 50-item measure with strong internal consistency (from 0.92 to 0.97 across subscales). Fear, avoidance, and functional disability were strongly associated with PHODA-YE scores, supporting construct validity. Within the PPRC sample, PHODA-YE was sensitive to changes over time in relation to functional improvements. Across the PPRC sample, patients found it helpful to complete the PHODA and target feared activities. Altogether, the PHODA-YE is a valid and concrete assessment tool that rapidly identifies specific activities and movements that elicit fearful responses from patients.

The PHODA-YE is a highly engaging electronic assessment tool that yields individually tailored treatment targets with results sensitive to change in response to pain treatment.

aDepartment of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Palo Alto, CA, USA

bDepartment of Psychology, University of New Mexico, Albuquerque, NM, USA

cDepartment of Anesthesiology, Perioperative and Pain Medicine, Boston Children's Hospital, Boston, MA, USA

dDepartment of Physical and Occupational Therapy, Boston Children's Hospital, Boston, MA, USA

eDepartment of Rehabilitation-Medicine, Maastricht University, Maastricht, the Netherlands

fDepartment of Clinical Psychological Sciences, Maastricht University, Maastricht, the Netherlands

Correspondence author. Address: Stanford University School of Medicine, 1070 Arastradero Rd, Palo Alto, CA 94304, USA. Tel.: (650) 723-6412. E-mail address: lesimons@stanford.edu (L. Simons).

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

Received June 14, 2016

Received in revised form January 02, 2017

Accepted January 12, 2017

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1. Introduction

The negative consequences of pain-related fear in children and adolescents with chronic pain and headache have been well documented.3,16,30 Evidence garnered from adult patients with chronic pain suggests that reducing elevated pain-related fear promotes participation in daily activities.2,12,13,31 Graded in vivo exposure (GEXP23,24) deliberately exposes patients to movements and tasks previously avoided due to fear of pain or reinjury and is effective in improving disability and reducing pain-related fear among adults with pain.1 Although acceptance-based approaches share some of the same core tenets as GEXP and have demonstrated efficacy among youth with chronic pain,29 there are no published studies implementing GEXP from a cognitive-behavioral perspective among children and adolescents. Implementation of effective GEXP involves 3 key elements: (1) psychoeducation regarding the fear avoidance model,25 (2) devising fear hierarchies with the Photographs of Daily Activities (PHODA)11 to identify currently avoided activities from least to most worrisome that serve as the cornerstone of the graded exposure sessions, and (3) engaging in progressively more difficult exposure sessions. The Photograph Series of Daily Activities (PHODA) is a tool validated for use with adults that is a cornerstone to development of individualized and targeted fear hierarchies (step 2) for GEXP11 and may facilitate more rapid or pronounced treatment gains in an interdisciplinary pain rehabilitation setting through its tailored approach.

Recently, clinicians and investigators at the Maastricht University adapted the adult PHODA for Dutch adolescents (PHODA-Youth22). This online, electronic assessment tool allows patients to visually rate their expectations about the harmful consequences of specific movements22 and helps guide prompt and accurate treatment decisions for the clinician. Despite its essential role, PHODA-Youth for English-speaking US children does not exist. Thus, we sought to adapt, implement, and evaluate the PHODA-YE, with inclusion of activities that are more common in American culture (eg, riding the school bus instead of riding a bicycle to school).

The specific aims of this study were to (1) adapt the Dutch PHODA-Youth (PHODA-Y) to assess perceived harmfulness of activities in US children and adolescents with chronic pain, (2) determine internal consistency, construct validity, and factor structure of the adapted PHODA-Y, (3) examine treatment sensitivity of the PHODA-YE in the context of an intensive pain rehabilitation setting, and lastly, (4) evaluate the potential efficacy of the PHODA-YE in guiding treatment targets and influencing outcomes by randomizing patients into 2 groups, one where the clinicians and patients receive PHODA-YE results specifying feared activities and movements and one with no feedback.

We hypothesized that (1) the adapted PHODA-YE would have high internal consistency, and strongly correlate with functional disability, pain-related fear, pain catastrophizing, anxiety, depression, and pain intensity. We also hypothesized that (2) the PHODA-YE would be sensitive to treatment response in the context of an intensive pain rehabilitation program, and that (3) implementation of the PHODA-YE to guide treatment targets (report group) would result in greater patient improvement in pain-related fears and anxiety at discharge, as compared to patients whose PHODA-YE results were not used to guide treatment (no-report group).

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2. Methods

2.1. Procedure

Participants were recruited during their multidisciplinary pain clinic evaluation at the Pain Treatment Services (PTS) at Boston Children's Hospital (BCH) or on admission to the Pediatric Pain Rehabilitation Center (PPRC), a day hospital intensive pain rehabilitation program that involves physical therapy, occupational therapy, psychological therapy, and medical and nursing support. For inclusion, children needed to be aged 8 to 20 with a diagnosis of any chronic pain disorder (eg, neuropathic pain, low back pain). Children who were 7 years and younger or had significant cognitive impairment as indicated by history or caregiver report (eg, mental retardation, severe brain injury) were not eligible to participate. The Institutional Review Board at BCH approved this study.

Patients and their parents were brought to a private room by a research assistant and asked to consent and assent for this particular research study, which included giving permission to evaluate their responses to PTS or PPRC clinic measures for research purposes. The PHODA-YE was completed online and specifically for this study, whereas all other measures are part of a standard clinic battery administered either on paper or online through our electronic data capture system.

Patients at the PPRC were also asked to complete the PHODA-YE at discharge from the program along with the program's battery of discharge measures. The baseline PHODA-YE was completed within 2 days of initiating treatment at the PPRC, and the discharge PHODA-YE was administered within 2 days of completing treatment.

PPRC patients were randomized into one of the 2 conditions: (1) “Report”: in which the treatment team received a comprehensive report of PHODA-YE findings and specific feared activities and (2) “No-report”: for which the PHODA-YE report was not shared with the interdisciplinary team. Reports were emailed directly to the patient's primary psychologist, occupational therapist (OT), and physical therapist (PT). The psychologist also received a “Patient Report” and was asked to give it to the patient and use it to discuss scores across domains. Clinicians were asked to respond by email to the research coordinator to confirm receipt of the report. Feedback surveys were collected electronically from the patients to determine whether they received the report from the psychologist as well as assess perceived helpfulness and usefulness of the report results.

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2.2. Measures

2.2.1. PHODA-YE

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2.2.1.1. Development of the PHODA-YE

In collaboration with the research team at Maastricht University (J.V. and M.G.), the Dutch PHODA-Y was translated into English. An expert panel consisting of 4 psychologists, 2 PTs, 2 OTs, and 1 art therapist specializing in pediatric pain treatment in the United States reviewed, edited, and expanded the PHODA-Y item pool. Of the 51 items on the Dutch PHODA-Y, 46 were retained in the English version (with 5 deleted items deemed less relevant for the US youth). An additional 32 items were generated for inclusion for a total of 78 items. These items were generated from an earlier version of the Dutch PHODA-Y and the expert panel. In addition to worry ratings, the US expert panel suggested adding an anticipated pain rating to be completed for each item.

After devising the 78-item pool, 4 patients with chronic pain (1-lower extremity, 1-upper extremity, 1-abdominal, 1-juvenile idiopathic arthritis) and their treating pediatric pain psychologist were interviewed for their critical feedback. When the patients completed an electronic prototype of the measures, they were encouraged to “think out loud,” and a research assistant took notes on the patient's “thoughts.” Structured interview questions for patient demo-users focused on the following domains: clarity of directions and measure language, photographs and item selection, appearance, helpfulness, and program usability. A prototype report of results was also constructed and given to the psychologists for feedback.

Based on feedback from patients and their psychologists, one additional item was added: “sitting for long periods of time.” The measure was also modified in the following ways: added a “back button” to navigate within the measure, resolved technical glitches (eg, freezing), added a tutorial to walk patients through how to drag and drop the items, and the terms “worry” and “pain” in the questions were italicized to better differentiate between the 2. A patient-specific report was devised, which includes screenshots of the patient ratings at the end of each domain (Fig. 1). The template for the clinician-specific report was also finalized, which included a summary of mean scores by domain, summary of ratings for individual items sorted in descending order, and an exposure log (Fig. 2).

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2.2.1.2. PHODA-YE draft version

The PHODA-YE draft version contained 79 items across 5 hypothesized activity domains: (1) Daily living (19 items), (2) Functional physical (15 items), (3) Sports-related physical (20 items), (4) School (12 items), and (5) Social (13 items).

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2.2.1.3. Administration

The PHODA-YE draft version was administered electronically on a tablet or on a desktop computer by trained research staff or clinicians. Items and their images appear in a fixed order and data are automatically stored in an electronic database, making administration highly standardized. Before the first photograph of an item appears, the following directions are displayed on the screen:

Please read the following instructions before beginning. Kids and teens in pain have often told us that they are fearful of doing certain activities because they think these activities will cause more pain or reinjure them. For this measure, you will be looking at a series of pictures that show different activities in many areas of life. Rate how painful you think each activity would be as well as the amount of worry it causes you.

**If an item is an activity that you do not do in your daily life (eg, there may be sports you don't participate in) select the answer “This activity does not apply.”

**If, however, it is an activity that you are not currently doing because of your pain, but intend to get back to—please still rate it. (This was a particularly important distinction that was specifically discussed by the administrator to ensure that any avoided activity was rated).

Once the participant has read the directions, she/he clicks to continue and is presented with a tutorial with 2 mock PHODA-YE items to answer before proceeding. The tutorial is a replica of the actual assessment and is presented to guide a participant through rating each item to ensure that the participant understands how to use the program properly before beginning formal assessment. During the tutorial, the participant was encouraged to ask the researcher or clinician any questions. The tutorial is accessible to revisit at any time throughout completion of the measure.

Once the tutorial is completed, assessment begins. The patient is presented with the first photograph (Fig. 1) asked “On a scale of 0 to 10, how worried are you that this activity would be harmful to your pain?” and is requested to drag and drop the picture on a worry scale ranging from 0 (“not at all worried”) to 10 (“extremely worried”). Next, the patient is asked, “On a scale of 0 to 10 how painful do you think this activity would be?” This question is answered through a slider bar with anchors of 0 (“not at all painful”) and 10 (“worst possible pain”). Both the worry and pain scales are in increments of 0 to 10. When the patient has rated both anticipated worry and pain for the item, they may click to the next activity. Participants cannot advance to the next activity without rating both worry and pain.

If an activity does not apply to the participant (eg, the activity is a sport that the participant does not play or the activity is one that the participant does not engage in, such as shaving), the participant may select “This activity does not apply” and move on to the next item. To account for items rated as “Not applicable,” subscale scores and total scores are calculated as a mean score of responses provided for worry and pain separately. Time to complete the PHODA-YE draft version was approximately 30 minutes.

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2.2.2. Validity measures

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2.2.2.1. Functional disability

The Functional Disability Inventory (FDI28) is a 15-item self-report scale that assesses difficulty in physical and psychosocial functioning due to a medical condition. The FDI asks about perceptions of activity limitations during the past 2 weeks; total scores are computed by summing the items. Higher scores indicate greater disability. The FDI has been widely used with pediatric chronic pain populations and has good reliability and validity.4

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2.2.2.2. Fear of pain

The Fear of Pain Questionnaire for children21 is a self-report inventory to assess pain-related fears. Each item is rated on a 5-point Likert-type scale ranging from 0 = “strongly disagree” to 4 = “strongly agree.” The FOPQ-C consists of 24 items with strong internal consistency (α = 0.92). This measure has 2 subscales: Fear of Pain and Avoidance of Activities. The FOPQ-C has been validated with pediatric chronic pain and headache samples and has demonstrated strong relations with child somatization, anxiety, and catastrophizing.

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2.2.2.3. Pain catastrophizing

The Pain Catastrophizing Scale, Child report (PCS-C6) is a validated self-report measure that is used to assess negative thinking associated with pain. The PCS-C comprised 13 items, which are rated on a 5-point scale ranging from 0 = “not at all true” to 4 = “very true.” Recent revalidation of the measure with an English-speaking chronic sample18 supported measure interpretation as a unitary construct, where items are summed to derive a total score ranging from 0 to 52; higher scores reflect higher levels of catastrophic thinking.

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2.2.2.4. General anxiety

The Revised Children's Manifest Anxiety Scale (RCMAS-219) is the measure of anxiety used in the PTS clinic. The RCMAS is a self-report questionnaire that comprised 45 items to assess anxiety symptoms in children and adolescents. A total score reflecting the level and nature of anxiety is obtained by summing all items (including lie score). T-scores greater than or equal to 60 are defined as clinically significant.

The clinical measure of anxiety used in the PPRC is the Multidimensional Anxiety Scale for Children (MASC14). The MASC is a 39-item, self-report inventory that assesses 4 domains of anxiety in children: physical symptoms (eg, tension), harm avoidance (eg, perfectionism), social anxiety (eg, rejection), and separation anxiety. The MASC has demonstrated strong reliability and validity as well as a stable factor structure across age and sex.

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2.2.2.5. Depression

Child depressive symptoms were assessed using the Children's Depression Inventory (CDI10), a 27-item self-report measure where items are rated on a 3-point scale. Higher levels of depressive symptoms are indicated by a higher total score.

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2.2.2.6. Pain intensity

Patients were asked to provide their average pain rating on a standard 11-point numeric rating scale ranging from 0 (“no pain”) to 10 (“most pain possible”).26

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2.2.3. PHODA-YE Feedback

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2.2.3.1. PHODA-YE Feedback Survey

The PHODA-YE Feedback Survey consists of 5 questions assessing helpfulness of completing the PHODA-YE, receipt of the report results, and implementation of the PHODA-YE in treatment. The measure was given to PPRC participants immediately after completion of the PHODA-YE at discharge.

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2.3. Statistical analyses

Data were entered into SPSS version 21.0. Using the full sample, descriptive statistics were conducted to examine underlying assumptions of normality for all variables of interest. All analyses to refine the items on the PHODA-YE were conducted with the worry ratings. First, significant skewing or kurtotic response patterns were examined. Item-total correlations were then calculated. Maximum likelihood factor analyses with oblique rotation were conducted for the PHODA-YE worry items to establish subscales for the measure.5 Subsequently, we calculated Cronbach alpha internal consistency estimates for PHODA-YE subscales. Construct validity of the PHODA-YE was examined with bivariate correlations for both the worry and pain subscales. Differences between pain and worry subscale scores were examined using paired sample t tests.

Using the PPRC-only sample, paired sample t tests were conducted to examine pre- to post-changes in PHODA-YE scores. Pearson correlation coefficients were computed to evaluate associations among changes (pre to post) in PHODA-YE worry scores with changes in disability, pain-related fear, and anxiety. Differences in outcomes by report group were examined using repeated measures analyses of variance.

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3. Results

3.1. Participant characteristics

Patients were invited to participate from November 2012 to July 2014 in the PPRC and from June 2013 to Dec 2013 in the PTS. Of the 97 potentially eligible patients out of 99 admitted in the PPRC, 96 enrolled in the study (99% recruitment rate). Of the 147 potentially eligible patients of the 174 patients evaluated in PTS, 112 enrolled in the study (76% recruitment rate). Reasons for nonparticipation were busy clinic schedule and disinterest. For patients who enrolled in the study at PTS but then went on for treatment in the PPRC (n = 13), data from the PPRC admission and discharge time points were used and data points were excluded from the PTS sample.

Participants were primarily female (82.0%) and Caucasian (93.6%), which is consistent with previously reported pediatric pain samples. Mean age for the sample was 14.3 (SD = 2.46), and median duration of pain was 13 months (range = 1-373). See Table 1 for further details regarding demographics and pain characteristics.

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3.2. PHODA-YE worry item selection and factor analysis

3.2.1. Item selection

Each of the 79 items was examined to determine its contribution to the scale. Twenty items that were rated as not applicable (N/A) by 20% or more of participants were removed (the 5 least endorsed items included driving [52% N/A], cheerleading/gymnastics [43% N/A], horseback riding [35% N/A], skateboarding [33% N/A], and attending religious activities [33% N/A]). Among the remaining 59 items, 3 items were dropped because of low fear endorsement.

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3.2.2. Factor analysis

The remaining 56 items were submitted to a maximum likelihood factor analysis with oblique rotation. The initial structure yielded 7 factors, but there were fewer than 3 items on one or more factors until the number of factors was set to 4. With a 4-factor solution, 6 items loaded below 0.40 and were subsequently dropped, resulting in a 50-item solution. Taking into account Cattell's elbow criteria on the screen plot7 (4 factors), the criteria of Eigen values >1 (6 factors), and the number of hypothesized dimensions (5 factors), a 4-factor solution best explained the structure of the PHODA-YE (Table 2). The resultant 50-item scale had an excellent Cronbach alpha of 0.98.

The results are consistent with the hypothesized subscales, with revision. Factor 1, labeled “Exercise/Sports,” contains 15 items (α = 0.97). Factor 2, labeled “Social/School,” contains 13 items (α = 0.95). Factor 3, labeled “Upper Extremity,” contains 9 items (α = 0.92). Factor 4, labeled “Activities of Daily Living,” contains 13 items (α = 0.95). Five items cross-loaded (factor loading >0.40 across 2 factors) and were retained on the factor with the higher loading. Internal consistency estimates were excellent across the 4 factors.

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3.3. 50-Item PHODA-YE

Mean scores for the worry and pain subscales are included in Table 3. Worry and pain subscale scores were not statistically significantly different with the exception of the total score (P < 0.05) and the Activities of Daily Living subscale (P < 0.01), with the pain subscales slightly higher. All factors were significantly intercorrelated ranging from r = 0.64 to r = 0.92 (Table 4).

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3.4. PHODA-YE, demographic, and pain-related factors

One-way analyses of variance were conducted to examine differences in PHODA-YE total and subscale scores across categorical demographic factors, and pain diagnosis. There were no differences in PHODA-YE total and subscale scores based on child sex, parent marital status, parent education, or parent employment status.

In regards to differences in the PHODA-YE scores in relation to pain diagnosis, patients with neuropathic pain reported the highest levels of PHODA-YE total worry (M = 5.28, SD = 2.20), and these values were significantly higher than patients with headache (M = 3.12, SD = 2.43), f(3,175) = 4.31, P < 0.001. For PHODA-YE total pain, patients with neuropathic pain reported higher levels of anticipated pain with activities than other patients (M = 5.73, M = 2.07), and these values were significantly higher than patients with abdominal (M = 3.80, SD = 1.87) and headache (M = 3.95, SD = 2.58), f(3,174) = 5.16, P < 0.001. Given the preponderance of Caucasian participants (93.6%), we did not examine race or ethnicity.

Pearson product-moment correlations were conducted to examine relations between PHODA-YE scores and child age, average pain ratings, and duration of pain. Average pain intensity was modestly and positively associated with PHODA-YE total worry (r = 0.21, P < 0.01) and more strongly and positively associated with PHODA-YE total pain (r = 0.44, P < 0.01). Child age and duration of pain were not associated with PHODA-YE scores.

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3.5. PHODA-YE construct validity

Relations between the PHODA-YE and functional disability, pain-related fear, avoidance of activities, catastrophizing, generalized anxiety, and depressive symptoms are displayed in Table 4. PHODA-YE scores demonstrate significant relations (P < 0.05) with all variables of interest (r = 0.24-0.064), with the strongest associations between higher PHODA-YE scores found with higher levels of functional disability and pain-related fear.

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3.6. Changes in functioning

Decreases in PHODA-YE subscale scores from admission to discharge in the PPRC were positively associated with improvements in functional disability, pain-related distress (pain-related fear and avoidance, pain catastrophizing), anxiety, and depressive symptoms (Table 5).

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3.7. Patient feedback on the PHODA-YE

Results from the PHODA-YE Feedback Survey completed by 57 of the 62 randomized patients are displayed in Table 6. Five patients did not complete the survey because of time constraints. Overall, an overwhelming majority of patients found completion of the PHODA-YE to be a helpful experience. Only 33.3% of patients in the report group indicated that they received a copy of their PHODA-YE results, with a slightly higher percentage (44.4%) indicating that the results were discussed with them, and that this discussion was helpful. A larger percentage of patients in the report group indicated that selected PHODA activities were addressed during treatment across therapies (psychology, PT, and OT). Last, all patients who worked on selected PHODA-YE activities during treatment, regardless of report group, indicated that it was helpful.

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3.8. Report status

Because of the small number of patients reporting that they received a physical copy of their PHODA-YE report, we did not examine differences between outcomes for the report and no-report groups.

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4. Discussion

The current investigation introduces an innovative electronic assessment tool that individualizes and guides treatment for youth with chronic pain. Implicit in its design is recognition that pain-related fear is a driving force that impedes treatment progress.20 Similar to the Dutch PHODA-Youth,22 this measure emerged as psychometrically sound and valid. Moreover, changes in PHODA-YE scores were associated with functional improvements after intensive pain rehabilitative treatment and patients reported that completing the measure and addressing feared activities depicted on the PHODA-YE were helpful. Altogether, the PHODA-YE represents a concrete assessment tool that rapidly identifies specific activities and movements that elicit fearful responses from patients.

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4.1. English development and validation

In generating items for the English PHODA-Y, pain experts and patients with chronic pain were consulted to expand the 46 items derived from the Dutch PHODA-Y to a total of 79 items. After item selection and factor analysis, the PHODA-YE consists of 50 items, of which 13 items are unique to this version. Although 5 factors were hypothesized, 4 were derived with (1) Social and School domains better reflected as one area of focus, (2) Daily Activities and Functional Physical Activities also merging into one area of focus, (3) Upper Extremity Activities emerging as a domain in its own right, and the (4) Active Physical Activities emerging as hypothesized (renamed Exercise/Sports). All factors on the PHODA-YE have strong internal consistency, with the Exercise/Sports subscale having the highest worry and anticipated pain scores, whereas the Activities of Daily Living subscale having the lowest. As hypothesized, the PHODA-YE was robustly associated with disability, pain-related fear, avoidance of activities, pain catastrophizing, anxiety, and depressive symptoms. These associations are consistent with the Dutch PHODA-Y that was significantly associated with functional disability and pain catastrophizing.22

Unique to the PHODA-YE, patients rate their worry and anticipated pain. This second dimension was added based on expert panel feedback. This rating scale allows patients who struggle to rate activities as worrisome to have the opportunity to describe them in terms of “anticipated pain.” As can be observed through the bivariate correlations between the 2 subscales, most patients rate worry and anticipated pain similarly, but this is not true in all cases. Giving the patients the opportunity to rate these activities on dimensions of worry and anticipated pain can (and has) provide(d) important clinical information to treatment providers. We did not get any feedback that it felt redundant, but rather that observed large discrepancies triggered important clinical dialogue between the patient and the clinician.

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4.2. Sensitivity to treatment response and impact on treatment outcomes

Among patients who completed the PHODA-YE before and after intensive pain rehabilitative treatment (PPRC), patients reported significant decreases in both PHODA-YE total worry and pain scores. These scores were significantly associated with improvements in disability, pain-related distress, and generalized emotional distress. With only a third of patients in the report group indicating that they received a copy of their PHODA-YE report, we did not examine treatment response by report status. In this study, we emailed the clinicians a copy of the reports and it is likely that implementation would likely improve by simply printing the reports and providing them “in hand” to the providers as a concrete cue to review the findings and discuss them with the patient. This would be an important methodological modification for future investigations interested in examining the impact of PHODA-YE use on treatment outcomes.

Encouragingly, an overwhelming majority (>80%) found completing the PHODA-YE helpful, which is an uncommon response from patients after finishing a questionnaire. Not only did they find completing the measure helpful, they also reported that it was helpful to discuss the results of the PHODA-YE assessment and address feared activities in treatment. Based on these responses, there seem to be tangible ways to potentially increase the impact of PHODA-YE assessment on treatment outcomes. We suggest having multiple providers (psychology, PT, and OT) discuss results with the patient and integrate identified worrisome PHODA-YE activities into treatment. In the recent validation of the PHODA short version (PHODA-SeV), the investigators explicitly targeted PHODA activities for patients randomized to exposure in vivo vs graded activity. As hypothesized, patients in the exposure in vivo group had significantly lower PHODA-SeV scores after treatment than patients receiving graded activity where perceived harmfulness of activities was not systematically targeted.11

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4.3. Limitations

Although our reduction of items likely improves feasibility of PHODA-YE utilization (with anecdotal feedback from patients that the 79-item measure was too long), it does restrict the scope of activities assessed. In clinical practice, we intend to modify the administration of the PHODA-YE to the core 4-subscale, 50-item measure with a supplemental section that includes the additional 20-items that were endorsed by a smaller proportion of the sample (eg, cheerleading, horseback riding), but may be germane to an individualized “Activity Ladder.” Also, although we recruited an expert panel of pediatric pain clinicians and pediatric patients with chronic pain to ensure that adaptation of the PHODA-Y to a US sample was fitting, there were few additions in the validated version that reflected potential cultural differences. Of the 12 new items proposed that were never part of even early versions of the Dutch PHODA-Y measure, only 3 items were retained in the final PHODA-YE (outdoor sports, typing at a computer, and field trips), with none of these items seeming US specific. As with the majority of chronic pain research, these results were derived from a predominantly Caucasian, female sample, which likely has influenced the frequency of endorsement of certain items over others, thus further supporting use of the supplementary section, as time allows. Last, over 80% of patients in this sample were diagnosed with either a musculoskeletal or neuropathic pain condition, and thus the core item set likely reflects difficulties among these patients compared with headache or abdominal pain patients. This is consistent with the Dutch PHODA that was developed specifically for patients with musculoskeletal pain. In fact, when piloted in our headache clinic, additional suggestions for items to include were made that reflect loud noises and bright lights and may suggest formulating a PHODA-YE that is geared toward this group. Moreover, the individuals in the photographs are Caucasian and do not reflect a racial or ethnically diverse group. Future iterations of this measure would likely benefit from including photographs of diverse youth to enhance generalizability.

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4.4. Implementation of the PHODA-YE

The PHODA was designed to guide graded exposure treatments and has been successfully implemented for the past decade among adults with chronic pain.26 Development of the Dutch PHODA-Y22 has lead to advances in clinical practice with a developmentally appropriate assessment tool guiding graded exposure for youth in the Netherlands and Belgium. Dr. Verbunt and colleagues are conducting a randomized clinical trial of GEXP for adolescents and young adults with the PHODA-Y serving as a cornerstone to devising treatment targets and assessing treatment response. Validation of the PHODA-YE unleashes the opportunity for psychologists, PTs, and OTs working with children and adolescents with chronic pain to begin using this concrete and automatically scoring electronic tool in their clinical practice. The PHODA-YE can be paired with measures such as the Canadian Occupational Performance Measure (COPM), which captures a patient's self-perception of performance in everyday living, over time. Although the COPM provides important insights into performance and satisfaction across a variety of self-selected activities and has been implemented in the context of treating patients with chronic pain,9,15 the PHODA-YE can potentially illuminate drivers of low performance scores among activities rated as important to the patient. Moreover, in our clinical experience, patients can sometimes struggle to generate specific activities to rate on the COPM. Pairing the PHODA-YE with the COPM would stimulate a broader range of potential activities to rate on perceived performance and satisfaction as well as provide a potential order for systematically beginning to address these important activities. Given that poor coping has been associated with less improvement in COPM scores among adults with chronic pain,17 addressing potential worries that may be driving performance in particular areas may enhance these outcomes. Last, having the current results replicated across other outpatient clinics and rehabilitative settings would enhance the robustness of our findings and provide further data regarding areas of importance among other pain diagnosis groups.

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4.5. Conclusions

Multidisciplinary treatment for chronic pain has long been considered standard of care because of its effectiveness compared with single-discipline treatment.8 The PHODA-YE reflects a multidisciplinary effort to assess and target activities that are considered worrisome and potentially pain-increasing among children and adolescents with chronic pain. Ideal implementation of the PHODA-YE would involve integration in physical, occupational, and psychological therapy practice, not only in interdisciplinary pain rehabilitation settings, but also across outpatient clinics that may not have the same level of resources on hand. With PHODA-YE results, clinicians may be equipped with key clues to lack of treatment gains and a potential means of reformulating the progression of activities in therapy, thus potentially increasing the efficiency and effectiveness of pain treatment therapies.

This investigation was supported by the William F. Milton Fund from Harvard University, the Sara Page Mayo Endowment for Pediatric Pain Research and Treatment, and the Department of Anesthesiology, Perioperative, and Pain Medicine at Boston Children's Hospital. The authors have no conflicts of interest to declare.

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Acknowledgements

The authors thank the many research assistants and collaborators who worked on this study (Christina Iversen, Kelly Smith, Elizabeth Carpino, Camila Ibagon and Anne Pauler). For access to the Photographs of Daily Activities–Youth English (PHODA-YE) for clinical or research purposes, please contact: L. Simons at lesimons@stanford.edu.

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References

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Keywords:

Chronic pain; Anxiety; Pain-related fear; Functional disability; Psychological assessment; Physical therapy; Occupational therapy; Pain rehabilitation

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