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Introduction
This case study summarizes Dr. Saul Rosenthal's Association for Applied Psychophysiology and Biofeedback (AAPB) presentation on lessons learned from challenging cases.
The content is used with Dr. Rosenthal's and AAPB's permission.
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The Client
Sylvia was a teenage girl who experienced debilitating chronic migraine-type headaches attributed to a series of viral infections she had endured. These headaches were so severe and persistent that they caused her to miss nearly an entire year of high school.
Before coming under Dr. Saul Rosenthal's care, Sylvia had undergone extensive treatment. She had been prescribed various medications aimed at alleviating her pain, none of which brought significant relief. Additionally, she participated in cognitive behavior therapy (CBT) for chronic pain management, but this, too, failed to yield positive results. Sylvia's headaches severely limited her ability to participate in normal adolescent activities and hindered her academic progress. Her condition had not only physical implications but also significantly affected her psychological and social well-being. When Sylvia was referred to Dr. Rosenthal, she had become almost completely isolated, rarely leaving her house, and her daily life was dominated by the chronic pain she endured.
Migraine Treatment
Dr. Rosenthal initiated a treatment regimen over the summer, starting with HRV training and behavioral activation. HRV training, which involves using biofeedback to improve heart rate variability, aimed to help Sylvia manage her physiological stress responses. Behavioral activation focused on gradually increasing Sylvia's engagement in activities outside her home, addressing her isolation and inactivity. Initially, these interventions showed promise: Sylvia's HRV indicators improved, indicating better autonomic regulation, and there was a noticeable reduction in both the intensity and frequency of her headaches.
As the summer progressed and the new school year approached, the treatment plan shifted to prepare Sylvia for returning to school. However, this transition introduced new challenges. Sylvia's sleep patterns became irregular, exacerbating her anxiety about school. Despite efforts to address these issues through continued HRV training and behavioral strategies, her condition deteriorated once she resumed school. The stress of reintegration into the school environment overwhelmed her, leading to a resurgence of headaches.
Moreover, Sylvia experienced two additional viral infections in the fall, which further complicated her health and treatment. In response to these setbacks, Dr. Rosenthal intensified the treatment by incorporating neurofeedback, focusing on general neurofeedback techniques and specific sensory-motor strip training to address school-related anxiety. Despite these efforts, Sylvia's condition continued to decline, and the complexity of her headaches increased.
Outcomes
Despite the initial improvements in HRV indicators and some reduction in headache intensity, Sylvia's overall condition did not show sustained improvement. Her headaches remained easily triggered and continued to cause significant distress. After two years of treatment, including periods of apparent progress, Sylvia and her family reached a point of frustration and disappointment. Sylvia eventually dropped out of school, which was a mutual decision between her and the school, reflecting the lack of effective accommodation and support for her condition. At 16, legally allowed to leave school in Massachusetts, Sylvia chose this option as she saw no benefit in continuing under the existing conditions.
Following the discontinuation of formal treatment, an acquaintance of Dr. Rosenthal, a family member of Sylvia, provided updates on her condition. Although Sylvia's headaches persisted and she developed agoraphobia, there were notable personal milestones she achieved independently. Sylvia overcame significant hurdles, such as obtaining her driver's license, something she had refused to attempt during treatment. Furthermore, she took steps towards completing her education by working on her GED, demonstrating a degree of resilience and self-determination that was not evident during the treatment period. These post-treatment developments suggest that while the direct outcomes of Dr. Rosenthal's interventions were limited, the foundation laid during therapy may have contributed to Sylvia's later achievements and gradual progress in managing her condition.
Lessons Learned
Recognizing the Role of Anxiety
The case of Sylvia highlights several critical lessons about the complexities of treating chronic medical conditions intertwined with psychological factors. One of the most significant lessons is the crucial role of anxiety in exacerbating physical symptoms. Throughout Sylvia's treatment, anxiety was a consistent underlying issue that was initially minimized both by Sylvia and her family. This contributed to a delay in focusing on anxiety as a driving factor of Sylvia’s headaches. This oversight had profound implications, as addressing anxiety more aggressively and earlier might have altered the trajectory of her condition. It underscores the importance of a holistic approach that considers the psychological components of physical ailments, particularly in cases where pain is chronic and debilitating.
The Challenge of Coordinated Care
Another critical lesson from Sylvia's case is the challenge of managing treatment across multiple environments and the necessity for coordinated care. Sylvia's interactions with her home, school, and various medical settings created a complex web that was difficult to navigate and manage effectively. Each environment had its own set of dynamics and stressors that influenced Sylvia's condition. This complexity made it challenging to implement a consistent and unified treatment plan. The failure to effectively integrate and communicate across these different settings highlights the need for a more systemic approach to treatment coordination, ensuring that all parties involved are on the same page and working towards common goals. Unfortunately, care systems (at least in the U.S.) are most commonly siloed, often making coordination the exception, rather than the norm.
Family Accommodation of Symptoms
The treatment approach also brought to light the issue of family accommodation of symptoms. Sylvia's family, understandably, made adjustments to cope with her chronic pain, which inadvertently may have reinforced her condition. This dynamic is both preventable and unavoidable; preventable in the sense that better education and support for the family could have mitigated some of their accommodating behaviors, and unavoidable in that watching a loved one suffer naturally elicits a desire to provide comfort. The case emphasizes the importance of involving families in the treatment process, educating them about the condition, and equipping them with strategies to support recovery without reinforcing negative behaviors.
Mismanagement of School Reintegration
A significant misstep in Sylvia's case was the handling of her return to school. The school’s approach to reintegrate her by immediately resuming a full schedule was ill-conceived and counterproductive. Despite Dr. Rosenthal’s efforts to advocate for a more gradual and supportive re-entry plan, the school’s rigid approach led to Sylvia feeling overwhelmed, which precipitated a relapse in her symptoms. This experience underlines schools' need for flexible and adaptive plans for students returning from prolonged absences due to health issues, as well as the negative impact of non-coordinated care, as described above. Effective communication and collaboration between healthcare providers and educational institutions are vital to creating environments that can accommodate and support students' unique needs.
Pitfalls of Treatment Persistence Without Reevaluation
Additionally, the case illustrates the potential pitfalls of treatment persistence without reevaluation. While initial improvements in Sylvia's HRV indicators and other objective measures were encouraging, they did not translate into sustained functional recovery. This discrepancy between objective improvements and subjective well-being suggests that continuous reevaluation of treatment efficacy is essential. Clinicians must be willing to adapt and change strategies when the current approach does not yield the desired outcomes, even if it means questioning initial successes and looking beyond conventional measures of progress.
Understanding Secondary Gains
Furthermore, the case sheds light on the psychological phenomenon of "secondary gain," where patients might derive some benefit from their symptoms, whether consciously or subconsciously. This can manifest as additional attention, avoidance of certain responsibilities, or other forms of psychological relief. Understanding and addressing these secondary gains are crucial for effective treatment. In Sylvia's case, recognizing how her symptoms may have functioned beyond just physical discomfort could have provided insights into more effective intervention strategies.
Clinician Self-Awareness and Adaptability
The experience with Sylvia also highlights the importance of clinician self-awareness and the need to challenge one's own assumptions and treatment hypotheses. It's easy to become entrenched in a particular line of treatment, especially when initial indicators suggest progress. However, this case emphasizes the need for constant reflection and willingness to adapt one's approach based on the evolving understanding of the patient's condition. Clinicians must balance confidence in their methods with humility and openness to change.
Long-term Success Beyond Immediate Treatment
Lastly, Sylvia's eventual achievements, such as obtaining her driver's license and working towards her GED, suggest that treatment benefits can manifest in indirect or delayed ways. This points to the broader lesson that immediate treatment outcomes are not the sole indicators of success. Building resilience, fostering self-efficacy, and supporting the patient’s long-term capacity to manage their condition can lead to significant positive changes, even if they are not immediately apparent during the treatment period.
Conclusion
The case of Sylvia offers a profound exploration of the challenges and complexities in treating chronic conditions with intertwined psychological and physiological components. Despite initial successes and objective improvements, the persistence of Sylvia's distress highlights the necessity for a comprehensive, multifaceted approach to treatment. It underscores the critical need for early and aggressive management of anxiety, coordinated care across different environments, and continuous reevaluation of treatment efficacy. The case also illustrates the importance of understanding family dynamics, recognizing the phenomenon of secondary gain, and maintaining clinician self-awareness and adaptability. Ultimately, Sylvia's journey reveals that immediate treatment outcomes are not the only measure of success, as long-term resilience and self-efficacy can lead to significant positive changes. Many health care settings hold “post-mortem” discussions among providers in order to understand the problems the team ran into and how to try preventing them in the future. The AAPB presentation from which this case was drawn was designed to serve the same purpose. It reminds us that every treatment failure is an opportunity for learning and growth, both for the patient and the clinician.
Evidence-Based Practice in Biofeedback and Neurofeedback (4th ed.)
Dr. Ethan Benore assigned the level 4 rating of efficacious for biofeedback for pediatric headache based on two randomized controlled trials and several quasi-experimental studies (Benore, 2023).
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Evidence-Based Practice in Biofeedback and Neurofeedback (4th ed.) is available from the Association for Applied Psychophysiology and Biofeedback (AAPB).
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Glossary
behavioral activation: a therapeutic intervention that aims to increase engagement in meaningful activities to combat depression and anxiety.
chronic pain: pain that persists for an extended period, typically longer than three to six months, and often resistant to standard medical treatments.
Cognitive Behavior Therapy (CBT): a type of psychotherapy that helps patients identify and change negative thought patterns and behaviors.
heart rate variability (HRV): the variation in time intervals between heartbeats, used as an indicator of autonomic nervous system function.
holistic approach: a method of treatment that considers the whole person, including physical, mental, emotional, and social factors.
neurofeedback: A biofeedback technique that uses real-time monitoring of brain activity to teach self-regulation of brain function.
psychophysiological approaches: treatments that address the interaction between psychological and physiological processes.
secondary gain: the benefits a person might receive from their symptoms, such as attention or avoidance of responsibilities, which can reinforce the condition.
self-efficacy: an individual’s belief in their ability to succeed in specific situations or accomplish a task.
sensory-motor strip: an area of the brain that processes sensory information and coordinates motor functions.
systemic approach: a method of treatment that considers the interconnections between different systems, such as family, school, and medical environments.
References from Dr. Benore's EBP4 Pediatric Headache Review
Abu-Arafeh, I., Razak, S., Sivaraman, B., & Graham, C. (2010). Prevalence of headache and migraine in children and adolescents: A systematic review of population-based studies. Developmental Medicine and Child Neurology, 52(12), 1088–1097. https://doi.org/10.1111/j.1469-8749.2010.03793.x
Benore, E. (2023). Pediatric headache. In I. Z. Khazan, F. Shaffer, D. Moss, R. Lyle, & S. Rosenthal (Eds.), Evidence-based practice in biofeedback and neurofeedback (4th ed.). Association for Applied Psychophysiology and Biofeedback.
Dodick, D. W. (2018). A phase-by-phase review of migraine pathophysiology. Headache, 58 Suppl 1, 4–16. https://doi.org/10.1111/head.13300
Dormal, V., Vermeulen, N., & Mejias, S. (2021). Is heart rate variability biofeedback useful in children and adolescents? A systematic review. Journal of Child Psychology and Psychiatry. https://doi.org/10.1111/jcpp.13463
Fentress, D. W., Masek, B. J., Mehegan, J. E., & Benson, H. (1986). Biofeedback and relaxation-response training in the treatment of pediatric migraine. Developmental Medicine and Child Neurology, 28(2), 139–146. https://doi.org/10.1111/j.1469-8749.1986.tb03847.x
Grazzi, L., Andrasik, F., D'Amico, D., Leone, M., Moschiano, F., & Bussone, G. (2001). Electromyographic biofeedback-assisted relaxation training in juvenile episodic tension-type headache: Clinical outcome at three-year follow-up. Cephalalgia, 21(8), 798–803. https://doi.org/10.1046/j.1468-2982.2001.218193.x
Guarnieri, P., & Blanchard, E. B. (1990). Evaluation of home-based thermal biofeedback treatment of pediatric migraine headache. Biofeedback and Self-Regulation, 15(2), 179–184. https://doi.org/10.1007/BF00999148
Headache Classification Committee of the International Headache Society (2018). The International Classification of Headache Disorders, 3rd ed. (ICHD-3). Cephalalgia, 38(1) 1–211.
Hermann, C., Blanchard, E. B., & Flor, H. (1997). Biofeedback treatment for pediatric migraine: Prediction of treatment outcome. Journal of Consulting and Clinical Psychology, 65(4), 611–616. https://doi.org/10.1037//0022-006x.65.4.611
Hershey, A. D. (2012). Pediatric headache: Update on recent research. Headache, 52(2), 327–332. https://doi.org/10.1111/j.1526-4610.2011.02085.x
Koechlin, H., Kossowsky, J., Lam, T. L., Barthel, J., Gaab, J., Berde, C. B., Schwarzer, G., Linde, K., Meissner, K., & Locher, C. (2021). Nonpharmacological interventions for pediatric migraine: A network meta-analysis. Pediatrics, 147(4), e20194107. https://doi.org/10.1542/peds.2019-4107
Kroner-Herwig, B., & Gassmann, J. (2012). Headache disorders in children and adolescents: Their association with psychological, behavioral, and socio-environmental factors. Headache, 52(9), 1387–1401. https://doi.org/10.1111/j.1526-4610.2012.02210.x
Kroner-Herwig, B., Mohn, U., & Pothmann, R. (1998). Comparison of biofeedback and relaxation in the treatment of pediatric headache and the influence of parent involvement on outcome. Applied Psychophysiology and Biofeedback, 23(3), 143–157. https://doi.org/10.1023/a:1022267104369
Lipton, R. B., Manack, A., Ricci, J. A., Chee, E., Turkel, C. C., & Winner, P. (2011). Prevalence and burden of chronic migraine in adolescents: Results of the Chronic Daily Headache in Adolescents Study (C-dAS). Headache, 51(5), 693–706. https://doi.org/10.1111/j.1526-4610.2011.01885.x
Nestoriuc, Y., & Martin, A. (2007). Efficacy of biofeedback for migraine: A meta-analysis. Pain, 128(1–2), 111–127. https://doi.org/10.1016/j.pain.2006.09.007
Ng, Q. X., Venkatanarayanan, N., & Kumar, L. (2017). A systematic review and meta-analysis of the efficacy of cognitive behavioral therapy for the management of pediatric migraine. Headache, 57(3), 349–362. https://doi.org/10.1111/head.13016
Oskoui, M., Pringsheim, T., Holler-Managan, Y., Potrebic, S., Billinghurst, L., Gloss, D., Hershey, A. D., Licking, N., Sowell, M., Victorio, M. C., Gersz, E. M., Leininger, E., Zanitsch, H., Yonker, M., & Mack, K. (2019). Practice guideline update summary: Acute treatment of migraine in children and adolescents: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Headache Society. Neurology, 93(11), 487–499. https://doi.org/10.1212/WNL.0000000000008095
Qubty, W., & Patniyot, I. (2020). Migraine pathophysiology. Pediatric Neurology, 107, 1–6. https://doi.org/10.1016/j.pediatrneurol.2019.12.014
Sarafino, E. P., & Goehring, P. (2000). Age comparisons in acquiring biofeedback control and success in reducing headache pain. Annals of Behavioral Medicine, 22(1), 10–16. https://doi.org/10.1007/BF02895163
Shiri, S., Feintuch, U., Weiss, N., Pustilnik, A., Geffen, T., Kay, B., Meiner, Z., & Berger, I. (2013). A virtual reality system combined with biofeedback for treating pediatric chronic headache—A pilot study. Pain Medicine, 14(5), 621–627. https://doi.org/10.1111/pme.12083
Siniatchkin, M., Hierundar, A., Kropp, P., Kuhnert, R., Gerber, W. D., & Stephani, U. (2000). Self-regulation of slow cortical potentials in children with migraine: An exploratory study. Applied Psychophysiology and Biofeedback, 25(1), 13–32. https://doi.org/10.1023/a:1009581321624
Stubberud, A., Varkey, E., McCrory, D. C., Pedersen, S. A., & Linde, M. (2016). Biofeedback as prophylaxis for pediatric migraine: A meta-analysis. Pediatrics, 138(2). https://doi.org/10.1542/peds.2016-0675
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