Edited by:
Reviewed by:
*Correspondence:
This article was submitted to Psychology for Clinical Settings, a section of the journal Frontiers in Psychology
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
A substantial number of children and adolescents suffer from longstanding pain, and previous studies report prevalence rates of 15–30% (
Previous research provides empirical support for treatments based on a cognitive behavioral approach for pediatric longstanding pain (
A few clinical studies have illustrated the relevance of values-based behavior in improving pain related disability following ACT for adults with chronic pain (e.g.,
Thus, the present study aimed to explore the relationship between pain intensity and individualized assessments pertaining to pain related disability following ACT for youth with longstanding pain. This was done using a single-subject design including frequent assessments, before, during and after treatment, of pain intensity and values-based activities, that is, short- and long-term personally chosen behavioral goals in line with personal values.
A concurrent multiple baseline design across individuals was utilized (
Three adolescents (S1, S2, and S3), two 14 year olds and one that was 18 years of age, with longstanding pain (i.e., a pain duration of more than 3 months) were included in the study. The patients were referred from county councils outside the Stockholm area to the Behavioral Medicine Pain Treatment Services (BMPTS), at the Karolinska University Hospital. Initial medical and psychological assessments at the clinic were conducted during 2–3 days (6–8 sessions). The medical assessment was based on a semi-structured interview focusing on the medical history of each patient. At this assessment pain intensity was rated using numeric scales ranging from 0–10 to 0–100 with the endpoints “no pain at all” to “worst pain imaginable.” The psychological screening assessed the negative consequences of pain on different life domains based on a semi-structured interview, which also included clinical behavior analyses of relevant target behaviors. Also, valued activities (treatment goals) were defined for future assessment. Written consent to participate in the study was provided by both adolescents and parents and the Ethical Review Board in Stockholm approved the study.
Activities deemed personally important by the participants were collaboratively formulated and rated individually on a daily basis. S1 rated the “Number of classes I attended today, of the total number of classes” (e.g., 4/5). S2 rated the “Number of minutes I bowled today” and the “Number of meters I jogged today.” S3 rated the “Number of minutes I walked without support today,” and the “Number of minutes I played tennis today.” In addition, the item “How much pain have you experienced today,” was rated daily on an 11-point numerical scale ranging from “no pain at all” (0) to “worst pain imaginable” (10). The participants were instructed to perform the ratings at the end of each day and parents were instructed to assist and ensure that the ratings were performed according to instructions. Pain was rated from baseline (A) to 7–14 days past follow-up (C).
Additionally, data was collected by the child version of the Functional Disability Inventory (FDI) (
In single-subject designs the baseline data illustrates the trajectory of the variables over time under conditions that do not change (
Visual non-statistical analyses of the graphed data within and between subjects were performed to evaluate if changes in the dependent variables (pain intensity and values-based behaviors, e.g., school attendance) were a consequence of treatment (
All patients lived with both parents. In addition to pain, two patients presented with psychiatric (S1) and somatic (S3) concurrent symptoms. Patient characteristics based on the initial clinical medical and psychological assessments are presented below. Previous medical investigations and treatments for the three patients are presented as Supplementary Material.
S1 was a 14-year-old boy whose pain onset followed multiple minor foot injuries, such as sprains, at age 3. Over time pain gradually became more generalized and increased in intensity. At assessment S1 presented with generalized continuous spontaneous pain in his head, shoulders, back, knees, groin, and ankles, as well as recurrent pain in arms and wrists. He experienced his headache as the most disturbing. In addition, he reported that pain was triggered by brushing and touching of the skin, as well as by applying light pressure to the skin (i.e., mechanical and dynamic mechanical allodynia) of the shoulder area. Pain increased during and after physical activity, primarily in his feet and groin. Also, following physical activity he sometimes experienced a temporary brief loss of motor functioning in his legs. At the initial assessment S1 reported a current pain experience of 98 on a scale ranging from 0 (“no pain”) to 100 (“worst pain imaginable”). Using the same scale, he reported that his pain was 100/100 when at its highest and 70/100 at its lowest.
Prior to assessment at the BMPTS, he was diagnosed with social phobia and Asperger’s syndrome. S1 was also taking prescribed medication for anxiety and depression. S1 had been bullied in school during a period in the seventh grade. At assessment he attended the eighth grade and the bullying had ceased. A high level of pain related school absence was reported, and S1 was completely absent from school the past semester due to pain. He had stopped playing soccer and only sporadically played floorball (a type of field hockey), due to pain and social difficulties on the team.
For S2, an 18-year-old male, pain debuted when he was 14 and the onset of pain could not be associated with any trauma or infection. Over time pain gradually generalized and increased in intensity, and at assessment S2 presented with continuous spontaneous back pain and mechanical dynamic allodynia in his back. He also experienced occasional shoulder and knee pain, especially during certain twisting movements of the knee. Walking was terminated after about 10 min due to pain. Pain was most intense in the mornings, and increased during physical activity. At assessment, S2 reported that his current pain intensity corresponded to a rating of 8.5 on scale ranging from 0 (“no pain”) to 10 (“worst pain imaginable”). His pain corresponded to a 10 when it was at its highest and a 6 when it was at its lowest.
Also, he presented with recurrent muscle spasms, fatigue and widespread loss of muscle tonus that resulted in a temporary inability to stand up. S2 attended the 3rd year of high school and had only been absent a few days due to pain the past semester. He had not gone bowling or played soccer in several years, due to pain.
Pain onset for S3, a 14-year-old girl occurred at age 13. This happened approximately 4 weeks after an ovarian torsion surgery, and was triggered by a strain in the groin during tennis play. Following a medical procedure at another university hospital, in which a tube with a camera was inserted through the urethra into the bladder (i.e., a cystoscopy) during epidural anesthesia (a regional anesthesia injected into the back), S3 lost all sensory and motor functioning in her legs. S3 presented with continuous spontaneous pain in the genital area and left groin as well as severe pain triggered by pressure to, or touch of, the skin (i.e., allodynia) in the left groin. She also experienced pain from the lower left abdomen and the center of her back. Pain intensity increased during and following physical activity.
S3 attended eighth grade and had a high level of school absence, and was completely absent from school the past semester. She had stopped playing floorball and tennis due to pain and loss of sensory and motor functioning in her legs. Key clinical characteristics for the three patients are presented in
Key patient characteristics for S1, S2 and S3 at the initial clinical assessment.
Age | Sex | PainDura | Prim. pain loc.(other pain loc.) | Concurrent symptoms | Diagnoses(secondary diagnoses) | |
---|---|---|---|---|---|---|
S1 | 14 | M | 132 | Head (wide-spread) | Recurrent loss of motor function in lower legs. | Unspecified generalized pain (Asperger’s syndrome; Social phobia). |
S2 | 18 | M | 48 | Back (head) | Muscle spasms, widespread temporary loss of muscle tonus | Unspecified generalized pain. |
S3 | 14 | F | 12 | Groin (lower abdomen, back) | Loss of motor and sensory function in both legs | Unspecified generalized pain (unspecified pain in other areas of the lower abdomen; hyperesthesia; painful micturition; and unspecified paralytic syndrome). |
The first treatment period (B1) consisted of 4 days, and was initiated directly following baseline. For all patients, sessions with a physician, psychologist and physiotherapist were included. All sessions promoted acceptance of pain and related distress as well as engagement in values-consistent behavior. During B1 the physician delivered 2–4 sessions; the physiotherapist one session; and the psychologist 7–15 sessions. The second treatment period (B2) also consisted of 4 days and was initiated 3–4 weeks after B1. During B2 the physician delivered 1–3 sessions; the physiotherapist one session; and the psychologist 5–7 sessions. Each session lasted 45–75 min. Three to 7 weeks following B2 there was a 1–2 days follow-up (C). The physician and the physiotherapist delivered one session each with the patient and the parents, and the psychologist 2–3 sessions.
During initial assessment behavioral goals were operationalized based on the patients’ values, in relation to for example family, school, leisure time, physical activity, and friends. At the start of B1 these values and goals were further discussed, as a way to motivate behavior change, and as a means to potentially reinforce behavioral patterns and direct behavior over extended periods of time, also in the presence of other aversive experiences such as pain and related distress. In conjunction with these discussions the physician and the psychologist provided information regarding the differences between acute and chronic pain, the complex and many times unclear etiology of longstanding pain, the high prevalence of such pain, and the potential downsides of a prolonged and extended search for an underlying and treatable pathophysiology. These discussions served to initiate a shift from seeking symptom reduction to increasing values-based action, even in the presence of pain.
To further motivate a shift from pain reducing behaviors to values-oriented behaviors, the short- and long-term workability of previously used behavioral strategies characterized by avoidance of pain and related distress (e.g., staying home from school) were collaboratively evaluated. This evaluation illustrated that avoidance strategies had led to a decrease in valued activities over time, without any corresponding decrease in pain and related distress. It also illustrated the difficulty of avoiding pain and related discomfort, while at the same time living an active and meaningful life.
In order to facilitate engagement in values consistent activities the psychologist introduced defusion and acceptance as alternative strategies to manage pain and related distress. Metaphors and experiential exercises were frequently used to enhance and elucidate the points addressed during sessions. The latter part of B1 focused on values-based behavior activation and the use of defusion and acceptance strategies while engaging in valued activities, such as attending classes in school and bowling. To facilitate in-session
The second treatment period (B2) focused on the implementation of ACT strategies in everyday life. When needed, previously formulated behavioral goals were discussed and refined, such as increasing the time spent in school. The interaction with friends, parents and other significant adults was also addressed. For example, we discussed how the youth wanted to be coached toward increased valued living, and how this could be communicated to parents or friends. At follow-up (C), strategies to handle setback and relapse were discussed with both the patient and parents.
Broadly, over both treatment periods parent sessions were focused on improving coaching behaviors. Initially, parents were taught operant principles (contingency management), and how these principles applied to their child’s values and goals. In addition, parental distress and ineffective coaching behaviors were discussed based on clinical behavior analysis of critical situations. Subsequently, alternative ways of dealing with parental distress to promote the child’s behavioral activation were discussed. For example, the parents were encouraged to be accepting of their own distressing thoughts and emotions related to their child’s pain, as a way to undermine the impact of these thoughts and feelings on effective coaching behaviors.
Notably, pain remained at similar levels throughout treatment for all patients. However, pain varied more for S1 compared to S2 and S3. Compared to baseline (
S2, did not bowl or jog during baseline, but shortly following B1 bowling increased in both duration (
S3 did not play tennis during baseline, but shortly following B1, there was an increase, both in duration (
Number of days for the respective phases, as well as means and ranges for the individual ratings, across all phases (A, B1, B2, and C) and participants (S1, S2, and S3).
A |
B1 |
B2 |
C |
||||||
---|---|---|---|---|---|---|---|---|---|
Variable | Nr | Mean (Range) | Nr | Mean (Range) | Nr | Mean (Range) | Nr | Mean (Range) | |
S1 | Daysa | 12 | 13 | 20 | 13 | ||||
Pain intensityb | 8 (5) | 8 (3) | 7.3 (4) | 8.3 (2) | |||||
Class att. (att. classes/scheduled classes) | 3.6/5 (0–4/5) | 4.3/5 (0–5/5) | 5/5 | 5/5 | |||||
S2 | Days | 26 | 22 | 77 | 13 | ||||
Pain intensity | 8 (1) | 7.5 (1) | 7.6 (1) | 7.5 (2) | |||||
Bowling (minutes/week) | 0 | 60 (60) | 181 (330) | 208 (380) | |||||
Bowling (occasions/week) | 0 | 1 (1) | 2.8 (5) | 2.9 (4) | |||||
Jogging (meters/week) | 0 | 383 (500) | 1419 (2350) | 760 (1800) | |||||
Jogging (occasions/week) | 0 | 2 (2) | 2.4 (3) | 1.5 (2) | |||||
S3 | Days | 33 | 23 | 74 | 6 | ||||
Pain intensity | 9 (2) | 8 (1) | 8.7 (2.5) | 9 (0.5) | |||||
Playing tennis (minutes/week) | 0 | 40 (40) | 241 (945) | 143 (225) | |||||
Playing tennis (occasions/week) | 0 | 0.75 (2) | 2 (6) | 1 (1) | |||||
Walking without support (minutes/week) | 0 | 0 | 335 (600) | 593 (605) | |||||
Walking without support (occasions/week) | 0 | 0 | 4.2 (7) | 5.5 (6) |
The results from the assessments made of pain related functional disability at the end of treatment and at follow up 2 months after treatment, indicated that functional disability had decreased for the participants, especially for S2 and S3. Please see
Functional Disability Inventory (FDI) scores for the three particpants (S1, S2, and S3).
FDI prea | FDI post | FDI 2mfub | |
---|---|---|---|
S1 | 29 | 26 | - |
S2 | 15 | 2 | 2 |
S3 | 50 | 27 | 36 |
This study explored patterns of change in pain intensity and valued activities using daily assessments. Notably, pain reduction was not targeted in treatment, but is important to assess in order to evaluate the effects of treatment and the relationships between symptoms and improvements in disability. The pattern of results clearly suggests that changes in valued behaviors were independent of changes in pain intensity. The greatest increase in values oriented behaviors was seen following the second treatment phase (B2). The results align with results from previous studies on ACT for youth illustrating improvements in pain related disability (
A number of methodological limitations should be noted. Limitations pertaining to the reliability of the visual analytic approach and to the generalizability of the results are of central concern. There is yet no clear consensus regarding the criteria for visual data analysis, particularly the interpretation of certain data patterns and how to establish the reliability of the effect (
More studies with larger samples are needed to determine the generalizability of the findings presented here. However, future studies should also consider the strengths of the current study, in essence, the focus on individual change in relation to personally important outcomes using multiple assessments during the course of the different phases related to treatment. Additionally, these studies should utilize designs with adequate experimental control that meet the requirements for adequate statistical analyses.
A number of studies on ACT for chronic pain have investigated the mediating role of core ACT processes, such as psychological inflexibility, in improving outcomes (
Clinically, repeated assessments of individualized outcomes can be used concurrently with validated questionnaires or other means of data collection (e.g., actigraphy) to provide detailed feedback as to the efficacy of treatment, and as a basis for discussing potential adjustments to the treatment in cases when desired change does not occur. In conclusion, results indicate that values-based activity can improve even when reductions of pain do not occur. The study also points to the importance to further research the effects of ACT for patients with complex symptoms, as well as the circumstances under which desired change occurs.
The study was approved by the Ethical Review Board in Stockholm. The participants (and their parents) were informed that the data and results were going to be analyzed and that the results would be presented in a scientific publication, in such a way that they as individuals could not be identified. Thus, we have altered certain characteristics of the participants in order to ensure their anonymity.
MK, GO, and RW was involved in the design of the study, data preparation, visual analyses, and manuscript preparation. LH was involved in the data preparation, visual analyses and manuscript preparation.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer SM declared a past co-authorship with one of the authors RW to the handling Editor, who ensured that the process met the standards of a fair and objective review.
The Supplementary Material for this article can be found online at: