A New Trial Will Test Whether EMDR Can Help Children with Sickle Cell Disease Reclaim Daily Life from Pain
For children living with sickle cell disease, pain is not simply a symptom that arrives and disappears. It can interrupt sleep, movement, friendships, school attendance and family life, while repeated hospitalizations may add fear and psychological distress to an already demanding medical condition. Now researchers at Amsterdam University Medical Center in the Netherlands are preparing a randomized controlled trial to test whether a trauma-focused psychological therapy can reduce the extent to which pain disrupts children’s lives. The RELAX study will investigate Eye Movement Desensitization and Reprocessing, or EMDR, as a non-drug, non-invasive treatment for pain interference in children and adolescents aged 6 to 18. The study protocol, published in BMC Pediatrics, does not report treatment results; instead, it describes how the trial will determine whether the approach works.
Sickle cell disease is an inherited disorder of hemoglobin, the oxygen-carrying protein inside red blood cells. In the most severe forms, red blood cells can become rigid and adopt a crescent, or “sickle,” shape. These cells can obstruct small blood vessels, restricting oxygen delivery to tissues and triggering vaso-occlusive crises. Such episodes can produce intense pain and may require hospitalization, intravenous fluids and opioid medication. Over time, the disease can also generate persistent or recurrent pain involving several body regions and different biological mechanisms, including tissue injury, inflammation and changes in how the nervous system processes pain. In children, repeated crises and medical procedures can become frightening experiences. The combination of physical pain, anticipatory anxiety and disrupted routines may contribute to a cycle in which pain increasingly dominates everyday decisions and behavior.
The investigators are focusing on “pain interference,” a measure that captures what pain prevents a person from doing rather than only how severe the pain feels. A child may report moderate pain yet still be unable to attend school, exercise, concentrate, sleep well or participate socially. The primary outcome will be assessed with the Pediatric Item Bank version 2.0 Pain Interference Short Form 8a, part of the Patient-Reported Outcomes Measurement Information System, or PROMIS. The questionnaire asks about the previous seven days and covers physical, emotional, cognitive, social and recreational activities, as well as sleep and enjoyment of life. Scores are converted to a 0-to-100 T-score, with higher values indicating greater interference. In Dutch pediatric reference data, a score of 49 or higher marks a clinically relevant level of difficulty. Children with severe sickle cell disease in previous research averaged a score above that threshold.
The rationale for trying EMDR comes from growing evidence that psychological and biological factors interact in chronic pain. Trauma exposure can affect emotional regulation, increase vigilance and alter pain sensitivity. Pain itself can also become associated with catastrophic mental images, such as fears that the next crisis will be unbearable or life-threatening. These responses may amplify the impact of pain even when the underlying disease activity has not changed. EMDR was originally developed to treat post-traumatic stress disorder. During therapy, a person recalls a disturbing memory while simultaneously following an external stimulus, commonly a therapist’s finger moving from side to side, although sounds or tactile stimulation may also be used. The proposed mechanism is that this dual-attention process helps the brain reprocess distressing memories, weaken their emotional intensity and create more adaptive associations. Researchers stress that EMDR is not intended to remove the genetic cause of sickle cell disease or directly prevent vaso-occlusive crises. Its target is the distress and functional disruption linked to pain and traumatic memories.
The RELAX trial will enroll 40 participants at Amsterdam UMC, with 20 randomly assigned to immediate EMDR and 20 assigned to a waiting-list control group. Eligibility requires a confirmed diagnosis of sickle cell disease, age between 6 and 18 years, sufficient Dutch or English to complete the assessments and a PROMIS Pain Interference score above the clinical cutoff. Children aged 6 or 7 will be assessed through parent reports, while those aged 8 and older will complete self-report measures alongside reports from a parent. Participants will be allocated in a one-to-one ratio using computerized block randomization that accounts for age group and gender. Because the intervention is psychological, neither participants nor therapists can be blinded, but independent outcome assessors will remain unaware of group assignments. The waiting-list group will receive the same EMDR treatment after a nine-week comparison period, allowing all participants eventual access to the therapy.
Treatment will consist of a 90-minute intake session followed by as many as six 60-minute EMDR sessions. During the intake, the psychologist, child and parents will develop a case formulation and identify pain-related and trauma-related memories that remain emotionally disturbing. These may include frightening hospital admissions, invasive procedures or previous crises, as well as “flash-forward” images that depict feared future events. Each target will be ranked using the Subjective Units of Disturbance scale, which ranges from zero, representing no disturbance, to 10, representing the highest disturbance. Therapists will begin with the memory or mental representation carrying the greatest emotional load. The standard EMDR sequence includes history-taking, preparation, assessment, desensitization, installation of adaptive information, a body scan, closure and re-evaluation. Treatment can finish early if distress associated with all relevant targets falls to zero and the child, parents and therapist agree that meaningful improvement has occurred.
The study will measure much more than a single pain score. Secondary outcomes include post-traumatic stress symptoms, anxiety, depressive symptoms, physical mobility, the number of painful days, pain intensity, pain medication use and school absence. Participants will keep a one-week diary before each major assessment, recording pain frequency, pain severity, medication and missed school. Pain intensity will also be rated on a 0-to-10 numerical scale before and after EMDR sessions. Trauma symptoms will be screened with the Child and Adolescent Trauma Screen, a questionnaire based on diagnostic criteria for post-traumatic stress disorder. It includes questions about potentially traumatic events, PTSD symptoms and psychosocial functioning. The investigators will also document themes in pain and trauma memories and conduct a 15-minute interview to determine whether families found the therapy practical, acceptable and manageable.
The planned sample is small, reflecting the relatively limited number of children with sickle cell disease in the Netherlands, but the researchers calculated that 40 participants should provide useful statistical power while allowing for an anticipated 15 percent dropout rate. The trial’s primary comparison will examine PROMIS Pain Interference scores two weeks after the immediate-treatment group finishes EMDR and nine weeks after participants enter the waiting-list group. The main analysis will use linear mixed-effects models, a statistical approach designed to evaluate repeated measurements while accounting for differences between participants and incomplete observations. Analyses will follow the intention-to-treat principle, meaning that all randomized participants will be included regardless of whether they complete treatment. The investigators consider a reduction of 2.25 points on the PROMIS scale to be clinically meaningful for children with sickle cell disease, although the importance of any observed change will also depend on effects on school, mobility, distress and daily activities.
Safety and treatment quality are central to the protocol because asking children to revisit distressing experiences can temporarily increase emotional discomfort. Therapists will be licensed, master’s-level clinical psychologists trained in EMDR through the EMDR European Association. Monthly group supervision will be led by a certified EMDR Europe child and adolescent consultant. With consent, therapy sessions will be recorded for supervision, and a random 10 percent of recordings will be reviewed to assess whether the treatment follows the prescribed protocol. Any undesirable experience will be recorded whether or not it is considered related to EMDR. Children will continue their usual sickle cell medications and clinical care throughout the study, and urgent psychological or medical support will be provided when necessary. The protocol excludes young people with conditions requiring immediate psychiatric intervention, current circumstances that make therapy unsafe, simultaneous trauma treatment with another therapist or major medical complications that could interfere with participation.
The trial is registered at ClinicalTrials.gov as NCT07001631 and was approved by the Amsterdam UMC medical ethics committee. Recruitment is expected to be completed in July 2027, meaning that the scientific community will have to wait for the actual outcome data before judging whether EMDR changes pain interference in this population. The researchers acknowledge that the single-center design and small sample may limit how broadly the findings can be applied, and that participants who need additional psychological care during the trial could complicate comparisons. Even so, the study addresses a neglected question: whether treating the emotional and memory-related consequences of repeated pain can improve function without altering the blood disorder itself. If the intervention produces durable reductions in pain interference at the planned three-month follow-up, it could offer clinicians another tool alongside medication, hematological care and established pain-management strategies. The broader possibility is equally significant: a therapy developed for traumatic memories might help children with other forms of chronic pain regain parts of childhood that illness has placed on hold.
Subject of Research: EMDR therapy for reducing pain interference in children and adolescents with sickle cell disease
Article Title: Effect of EMDR for reduction of pain interference in children with sickle cell disease, the RELAX study: a randomized controlled trial protocol
Article References: Nery, M., Scholten, L., Voorrips, C. et al. “Effect of EMDR for reduction of pain interference in children with sickle cell disease, the RELAX study: a randomized controlled trial protocol.” BMC Pediatrics 26, article 797 (2026). Original research page
Image Credits: AI Generated
DOI: 10.1186/s12887-026-07153-2
Keywords: sickle cell disease, pediatric pain, pain interference, EMDR therapy, chronic pain, post-traumatic stress, randomized controlled trial, PROMIS, children’s health
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