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.
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.
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).
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.
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.
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.
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.
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
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.
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.
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.
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 email@example.com.
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Keywords:© 2017 International Association for the Study of Pain
Chronic pain; Anxiety; Pain-related fear; Functional disability; Psychological assessment; Physical therapy; Occupational therapy; Pain rehabilitation