Methods
This is an observational study conducted at a quaternary care pediatric hospital. The YA-IIPT program development was completed in September 2022, and we expected to enroll 50 patients between March 2023 and June 2024.
The design of our program was based on the biopsychosocial, functional rehabilitative approach of IIPT, which includes primary disciplines of physical and occupational therapies, pain medicine, and behavioral health, along with recreational and music therapies, while incorporating novel aspects to meet the developmental needs of YAs. Development of the program was based on several tenets agreed upon by a group of interdisciplinary stakeholders and with consultation with existing IIPT programs globally. These tenets included: (1) treatment delivered outside of typical academic or vocational hours, (2) didactic modules relevant to YAs, (3) interventions that emphasize self-management and foster transition to adulthood, (4) an interdisciplinary, biopsychosocial approach to pain management.
On the basis of these principles, a half-day (4 h), 4 week, weekday program was implemented with treatment scheduled in the late afternoon to evening hours to promote academic/vocational engagement while attending the program. Caregiver/family involvement was deemed optional in part due to YAs being their own legal guardians and expected variation across patients in levels of independence and connection to caregivers. The curriculum’s relevant topics included the transition to adulthood, health insurance education, financial literacy, educational/occupational support, and health care self-management. To address participant feedback, the treatment team conducted individual exit interviews at discharge to inform ongoing program development and quality improvement. Program team meetings were held bi-weekly with all disciplines to review feedback, monitor patient outcomes, and modify program interventions.
A typical treatment day begins with a 1-hour didactic group focusing on relevant educational topics, followed by three 45-minute individual therapy sessions, and ending with a 45-minute group session (Table 1 ). Patients were admitted in cohorts of a maximum of 4 patients for the 4-week treatment course. Participants were permitted to miss occasional sessions for select reasons (eg, academic examinations or job interviews). However, absence exceeding 2 full treatment days was classified as noncompliance, and consideration was given for dismissal from the program.
Sample YA-IIPT Schedule *
Group focus and discipline rotate throughout the week.
All patients were initially evaluated through our multidisciplinary outpatient pain treatment clinic by a pain physician and pain psychologist, with our referral process detailed in Figure 1 . Patients referred from the outpatient pain treatment clinic were those who continued to have persistent pain and impaired functioning despite treatment with psychological therapy, medication, and/or nerve block trials, and physical or occupational therapy. All referrals were discussed and screened for eligibility by the IIPT leadership team during weekly meetings. Patients were deemed eligible to participate in the program if they (1) were ages 18 to 27 years; (2) presented with pain-related disability refractory to prior inpatient or outpatient treatments; (3) had no contraindications for exercise; and (4) provided written consent and expression of willingness to engage in all aspects of treatment. Patients were not eligible to participate in the program for the following reasons: (1) active substance misuse, (2) currently pregnant or trying to conceive, (3) significant cognitive deficits, (4) severe psychopathology, including active suicidality, self-injury, psychosis, and/or significant eating disorder. We enrolled patients irrespective of race, ethnicity, primary language, socioeconomic status, geographic location, or health insurance status. All treatment occurred in our YA-IIPT, located in the Pediatric Pain Center of Boston Children’s Hospital.
YA-IIPT referral process.
Our IIPT focused on increasing functioning in various domains of life (ie, social, educational, occupational, emotional, and physical) in the presence of chronic pain and related symptoms. All interventions aimed to enhance the individuals’ self-management of pain while encouraging progressive re-engagement in desired or previously avoided activities. Throughout their time within the YA-IIPT, patients worked with physical therapists, occupational therapists, pain psychologists, pain physicians and nurses, social workers, music therapists, and recreational therapists. If the primary team deemed a referral appropriate, a pain psychiatrist would consult with patients to consider if medication management would be beneficial. Please see Supplemental Digital Content 1, http://links.lww.com/CJP/B313 , for further information on discipline-specific interventions.
Patients returned for follow-up appointments at 6 weeks and 6 months after discharge. The focus of the appointments included solving barriers to completing postdischarge recommendations, addressing current health concerns, medication management, and review of functional goal progression.
Measures were collected through patient self-report through an independent, secure, web-based data collection platform. Patients received an e-mail link to the questionnaires 3 days before admission, 3 days before their discharge, and 6 weeks and 6 months postdischarge. The time required for completion of the questionnaires was ∼30 to 45 minutes. YA-IIPT patient questionnaire responses were included in our Chronic Pain Data Repository, a clinical registry of information on patients seen across our pain clinical settings, operating under a standardized research protocol approved by the hospital’s institutional review board (IRB) since October 2018. 7 All data from the YA-IIPT program (questionnaires and clinical data documented in the electronic medical record) is stored in the repository and can be accessed following a formal written request by the investigator, following scientific review committee approval.
Outcome measures were selected to capture pain and related disability based on the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) model, including functional ability, psychological functioning, pain experience, and quality of life. 8 For physical functioning, both patient-report and performance-based measures were included. Due to the structure of follow-up visits, performance-based measures were evaluated at admission and discharge, and were not conducted at follow-up visits. The Transition Readiness Assessment was only collected at admission and discharge, and PROMIS anxiety and depression measures were not obtained at the 6-month follow-up, as patients did not meet with a behavioral health provider at this time point. Measures of headache-related disability are included for a subset of patients reporting chronic headaches. Basic demographic information (eg, age, gender) and medical information (eg, pain diagnoses, comorbid conditions, and psychological diagnoses) were collected from the electronic medical record. Please see Supplemental Digital Content 2, http://links.lww.com/CJP/B314 , to see more details on our measures.
The PROMIS Pain Intensity scale assesses pain intensity over the past 7 days. 9 A T -score of 50 represents the average pain intensity level in the general US adult population with a SD of 10. Higher scores indicate greater pain intensity. The current sample’s internal consistency (Cronbach α) at discharge was 0.85.
The PROMIS Pain Interference scale examines the extent to which pain interferes with physical, cognitive/emotional, and social activities. 10 , 11 Each of the 6 questions has 5 response options ranging in value from 1 to 5. A sample item is “How much did pain interfere with your enjoyment of life?” A T -score >50 indicates average pain interference, with a SD of 10. Higher scores indicate greater pain interference. The current sample’s internal consistency (Cronbach α) at discharge was 0.89.
The HIT-6 is a 6-item self-report measure that assesses the impact of headaches on daily life across 6 domains: pain, social functioning, role functioning, vitality, cognitive functioning, and psychological distress. 12 Individuals who endorsed headaches completed this measure. Higher scores indicate a greater impact of headaches on life.
The Photosensitivity Avoidance Behavior Scales (PHOTO-SABS) is a self-report outcome measure of avoidant behaviors in individuals with headache-related sensitivity to light. Those who endorsed headaches completed this measure. Higher scores indicate more significant avoidance or modification of the environment due to photosensitivity.
The Photosensitivity Avoidance Behavior Scales (PHONO-SABS) is a self-report outcome measure of avoidant behaviors in individuals with headache-related sensitivity to sound. Those who endorsed headaches completed this measure. Higher scores indicate more significant avoidance or modification of the environment due to phonosensitivity.
The PROMIS Adult Depression and Adult Anxiety measures are 8-item self-report measures that assess anxiety and depressive symptoms, respectively, in individuals 18 and older. 13 A T -score of 50 is considered average for the general adult population in the United States for depression and anxiety, with a SD of 10; higher scores indicate greater severity of depression or anxiety. The current sample’s internal consistency (Cronbach α) at discharge was 0.89 (depression) and 0.93 (anxiety).
The Pain Catastrophizing Scale is a 13-item measure that examines negative thinking associated with pain. 14 An example item is “ I worry all the time about whether pain will end.” A score higher than 30 indicates a clinically significant level of pain catastrophizing. The current sample’s internal consistency (Cronbach α) at discharge was 0.94.
The Chronic Pain Acceptance Questionnaire-Revised (CPAQ-R) is a 20-item self-report measure designed to evaluate a patient’s ability to accept and function with chronic pain. 15 As an example, participants respond to items such as “My life is going well even though I have chronic pain.” Scores >50 indicate greater levels of pain acceptance. The current sample’s internal consistency (Cronbach α) at discharge for activity engagement was 0.86, and pain willingness was 0.79.
The EQ-5D-5L is a valid and reliable self-report measure that assesses health-related quality of life using a descriptive system and the EQ visual analog scale across 5 domains. 16 A sample of item content is “I have no problems doing my usual activities.” Higher scores indicate a greater quality of life.
The World Health Organization Disability Assessment Schedule (WHODAS) 2.0 is a 36-item self-report measure that assesses disability in adults across 6 domains. 17 A representative item is “In the past 30 days, how much difficulty did you have in your day-to-day work/school?” Higher values indicate higher levels of disability. The current sample’s internal consistency (Cronbach α) at discharge was 0.94.
The TRAQ is a 20-item scale with 5 identified subscales scored on a scale from 1 to 5 that assesses the ability of adolescents and YAs to manage their own health/health care and skills required to transition to adult health care, collected at admission and discharge. 18 A sample item is “Do you reorder prescriptions before they run out?” Higher scores indicate greater preparedness to manage one’s own health and health care/ability to transition to an adult health care setting.
The Canadian Occupational Performance Measure (COPM) is an outcome measure of patient perception of performance and satisfaction with engagement in everyday activities in persons with chronic pain. 19 , 20 Higher scores represent higher self-perceived performance and satisfaction. An increase of ≥2 is deemed a clinically significant improvement.
The FitKids treadmill test (FTT) is a valid treadmill protocol measuring cardiovascular fitness. 21
The 100 ft shuttle is a time-based measure of maximum running or walking speed on the Bruninks-Oseretsky Test of Motor Proficiency, 2nd edition. 22
All analyses were run utilizing SPSS version 29. Given the descriptive nature of the study, no formal sample size was calculated a priori. However, with an estimated 50 patients attending the program, at 90% power and an alpha of 0.05, we calculated that we would be able to detect a change of 5 points in all PROMIS scores, assuming a SD of 8 points. Descriptive statistics were calculated for all demographic and study variables. Missing data were due to patients not completing all questions for a measure at admission and/or discharge, or due to patients not completing long-term follow-up surveys entirely. Patients who did not complete the program or had interrupted admissions were not included in the analyses. Paired-samples t tests were conducted on all variables comparing admission to discharge. Repeated-measure analyses of variances (ANOVAs) were conducted to analyze within-group comparisons between admission, discharge, 6-week, and 6-month follow-up. Repeated-measure ANOVAs were conducted on all variables except for physical functioning measures and the TRAQ, which were only collected on admission and discharge, and anxiety and depression measures, which were only collected on admission, discharge, and 6-week time points. Nonparametric tests were conducted instead of t tests and ANOVAs in a few measures due to the data not achieving normal distribution. We used Bonferroni correction to set a new significance level of α=0.02 (0.05/3 time points) to adjust for multiple comparisons.
Results
Between March 2023 and June 2024, 118 patients were referred to the YA-IIPT. Of the patients referred, 79 met eligibility criteria, and 48 patients were admitted to the program. Six patients were discharged prematurely due to psychological concerns, noncompliance with program expectations, and financial reasons, resulting in follow-up for 42 patients. 74% of patients completed self-reported measures at 6 weeks, and 29% completed measures at 6 months after discharge. The mean age of participants at admission was 21.2 years (SD=2.4). Participants were 54.8% female and 64.3% white non-Hispanic (Table 2 ). Most patients had a median of 2 pain diagnoses, ranging from 1 to 4 diagnoses, and 4 psychological diagnoses, ranging from 2 to 7 diagnoses. Table 2 includes population demographics. All patients received chronic pain diagnoses according to ICD-11 23 and psychological diagnoses according to DSM-5 24 (Tables 3 , 4 ). Although patients presented with a wide variety of diagnoses, the most common presenting pain diagnoses were primary headache pain (40.5%), chronic widespread pain (31%), and primary musculoskeletal pain (31%). Thirty percent of patients presented with chronic primary visceral pain, primarily functional abdominal pain or chronic pelvic pain due to endometriosis. Two patients had chronic postcancer treatment pain, including chronic pelvic and back pain after treatment for pelvic Ewing sarcoma and chronic leg pains after treatment for acute lymphoblastic leukemia. One patient had persistent joint pain after hemarthrosis from hemophilia A. Comorbid symptoms were commonly found. Over 30% of patients presented with coexisting fatigue, 21% with gastrointestinal symptoms, primarily nausea, constipation, and emesis, 21% with orthostatic symptoms, and 14% with cognitive fog.
Demographic Characteristics of Patients Within the YA-IIPT (n=42)
The YA-IIPT accepted 2 individuals who were under 18, due to their independent living.
Medical Diagnoses (ICD-11)
Multiple locations are defined as 3 or more areas.
Psychological Diagnoses (DSM-V)
Patient-reported measures of pain intensity and pain interference significantly decreased from admission to discharge (Table 5 ). ANOVAs for admission, discharge, and 6-week follow-up showed statistically significant reductions in pain intensity and pain interference between each time point, which continued at the 6-month follow-up (Table 5 , Fig. 2 ). Headache experience was evaluated among the 41% of the patients who presented with primary headache pain. Statistically significant improvement was found in headache severity from admission to discharge [58.3 (9.9) vs. 53.9 (8.8), P <0.001]. Although not statistically significant, we observed a trend toward improvement in headache-associated symptoms of photophobia [12.9 (8.8) vs. 9.1 (6.1), P =0.03] and phonophobia [11.4 (10.0) vs. 7.9 (6.3), P =0.03] from admission to discharge.
Outcome Comparisons Between Admission, Discharge, 6-Week, and 6-Month Follow-Ups
Absolute mean differences and P- values based on repeated measures ANOVAs with Bonferroni correction for complete data at each time point.
Measures were not collected at the 6-month follow-up.
Used nonparametric data due to normality.
COPM indicates Canadian Occupational Performance Measures; EQ-5D-5L, European Quality of Life 5 Dimensions 5 Levels; TRAQ, Transition Readiness Assessment Questionnaire; WHODAS, World Health Organization Disability Assessment Scale.
Outcome comparisons between admission, discharge, 6-week, and 6-month follow-ups.
Patient-reported measures of anxiety, depression, pain catastrophizing, and chronic pain acceptance significantly improved from admission to discharge are presented in Table 5 and Fig. 2 . On average, patients reported mild anxiety and depression on admission, which improved over the course of treatment to the normal range at discharge and were maintained at the 6-week follow-up. Twenty-four percent of patients had clinically elevated pain catastrophizing scores on admission. Eighty percent of those patients improved to a nonelevated range for pain catastrophizing by 6 months after discharge. There is a trend toward continued improvement in chronic pain acceptance at the 6-month visit.
We observed improvements in mean scores for quality of life (EQ. 5D5L) and functional disability (WHODAS) from admission to discharge, which were maintained through the 6-week and 6-month follow-up period according to one-way repeated-measure ANOVAs (Table 5 , Fig. 2 ). Thirty-one patients (74%) reported improvement in their quality of life and overall function from admission to discharge. We did not observe significant improvement in participant transition readiness for health and health care management (TRAQ; Table 5 ).
In the 100 ft shuttle run, participants significantly improved their running speed between admission and discharge (Table 5 ), improving on average by 1.7 seconds. Participants improved their cardiovascular endurance within the FitKids treadmill test by an average of 40.8 seconds between admission and discharge (Table 5 ). Sixty-two percent of the sample achieved >85% maximum heart rate (HR) at admission compared with 71% at discharge. The maximum HR achieved was not statistically significant between admission and discharge. The COPM for performance and satisfaction with physical functioning on admission, discharge, and the mean difference are presented in Table 5 . On the basis of this, 83% of participants improved in occupational satisfaction, and 90% improved in occupational performance.
Discussion
This preliminary study presents treatment outcomes of an IIPT developed specifically for YA patients with chronic pain and functional impairment and supports the feasibility and effectiveness of this model. Our YA-IIPT program incorporates a biopsychosocial approach to chronic pain with an emphasis on strategies to support the self-management of pain, such as cognitive-behavioral therapies, psychoeducation, coping skills training, physical therapy, occupational therapy, and independence with functioning. 5 Results demonstrate improvements in pain experience, psychological and physical functioning, disability, and quality of life between admission and discharge. Measures obtained showed continued improvement at the 6-week follow-up. Although only ∼30% of patients completed surveys 6 months after program discharge, results suggest that progress was maintained at this time point. The measure of transition readiness (TRAQ) did not show significant improvement from admission to discharge. However, admission scores were at the upper end of the scale, indicating a ceiling effect that limited the potential for observable improvement at discharge. Furthermore, given the complex and unique needs of YAs with chronic pain, meaningful changes in transition readiness may be more likely to occur at subsequent time points after discharge.
Morrison and colleagues described comparable outcomes of an IIPT program for YAs demonstrating improvements in pain interference, severity, pain catastrophizing, depressive symptoms, and physical functioning at program discharge. Our results show similar improvements in psychological and physical functioning at program discharge. Moreover, our data extend the existing literature by showing that these improvements were sustained at 6 weeks postdischarge, and although follow-up data at 6 months were incomplete, available results suggest that gains were maintained at that time point.
A core aspect of our YA-IIPT is to enhance functioning, reduce disability, and support independence in adulthood. We observed substantial improvement at 6 weeks but noticed some attenuation in pain intensity and pain interference at 6 months. However, pain intensity and interference remained improved at 6 months from admission. This may indicate the need for additional interdisciplinary follow-up after discharge to support YAs in maintaining momentum and continuing to generalize skills learned in the program to their home, academic, and occupational environments.
YAs represent a distinct developmental period characterized by unique psychosocial changes and neurocognitive developments. 1 Results of this study are encouraging because little research has been done on the effectiveness of IIPT programs in young adulthood, and limited information exists on effective treatment interventions for chronic pain in this developmental stage. To our knowledge, this study is the first to show that improvements in pain, functioning, quality of life, and disability are maintained in the weeks to months following participation in a YA-IIPT program.
Chronic pain during this developmental period can significantly impact health-related quality of life. 6 Our findings indicate that an IIPT that emphasizes self-management of the pain experience, offers treatment outside of academic/occupational hours, provides a developmentally homogenous cohort, and includes education on topics unique to YAs with chronic pain is effective in reducing pain intensity and pain interference, enhancing quality of life, increasing functional abilities, and supporting physical/psychological functioning. Our data also support interventions tailored to meet the unique needs of this population, such as managing the transition to adulthood and self-management of their health care experiences. 1 , 2
Given the small sample size and racial/ethnic homogeneity of the study sample, our results should be replicated in larger prospective studies, ideally with comparison to control groups receiving other models of pain treatment to determine generalizability to a larger, more diverse population. This research was conducted in an intensive pain rehabilitation setting of a quaternary pediatric hospital, so the generalizability of the study to individuals with potentially less severe functional limitations is unknown. However, it is reasonable to expect that if more severely affected patients have benefited, then individuals with less severe functional limitations may also experience positive outcomes. In addition, many patients did not complete all questions for a measure at admission and/discharge or the 6-month follow-up entirely, limiting conclusions from that time point and the broader applicability of the results. However, patients who did not complete the 6-month follow-up do not appear to be substantially different in age, gender, race, pain diagnosis, comorbidities, or psychological diagnosis from those that completed this follow-up time point. Future studies should address adherence with discharge treatment plans and should assess longer-term outcomes following discharge.
Conclusions
This study of IIPT, designed for the YA population, demonstrates the effectiveness of IIPT treatment for managing pain, enhancing quality of life, functional ability, and psychological functioning following completion of the program in this population. Outcome data at 6-week and 6-month follow-up suggest that improvements in pain reduction, and psychological and physical functioning were maintained. Findings from this study are encouraging and suggest the ongoing benefits of this treatment approach for YAs with chronic pain.
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