In 2008 (eek, that’s a decade ago…) I began my faculty career as an attending psychologist in the newly minted Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Boston Children’s Hospital, Boston, MA, USA. I was lucky enough to be a part of an interdisciplinary team that watched many young people change the trajectory of their lives – once ruled by debilitating pain to a life full of meaning and beloved activities. Time and time again at the start of treatment, parents would ask – “Will this pain program make my child better?” Intensive pain rehabilitation involves a significant commitment of resources from the patient, family, and others. They want to know if putting their lives on hold, and the associated financial and emotional cost, will be worth it. Pain rehabilitation is often the ‘last stop’ on a journey of several (failed) attempts to remedy the pain problem. This question is asked with a mix of hope and despair. Our response – “We expect this program will get your child more functional and eventually the pain will get better.”
As a clinician- scientist, I asked myself…Is that true? Where’s the data to back up our claim? Or more appropriately – What really happens to patients who participate in this program? Can we predict who will fare better or worse?
To begin to answer these questions, we tracked patients who completed the PPRC intensive pain rehabilitation program from July 2009 to March 2014. Among the 280 patients who completed treatment and consented for the study (from 301 PPRC admissions), 253 were assessed at 5 time points (admission, discharge, 1-month, 4-month, and 12-month follow-up). Individual trajectories were empirically grouped using SAS PROC TRAJ (a stats approach that clusters patients based on similar responding over time and can handle missing data points). So what did we find?
(Really) Good News – the overwhelming majority of patients (88%) regain day-to-day functional abilities moving from severe diability to mild disability as measured on the functional disability inventory – we can tell parents and patients that they will be functioning better at discharge and those improvements will be maintained. For many families, they want more – Yes, okay better functioning, but what about the pain?
(Other) Good News – Approximately 35% of patients report only mild pain at discharge, with another 38% reporting mild pain at 1-month follow-up. Thus, we can say a full 73% of patients will report mild to no pain one month after treatment that maintains at 1-year follow-up.
Okay, but there were patients with no pain improvement; what are the odds that my child will be part of that 27%? Do we know what might increase risk? After taking into account several factors such as age, pain characteristics, functional impairment, patient cognitive-affective characteristics, and parent cognitive-behavioral characteristics, one modifiable risk factor at the start of treatment stood head and shoulders above the rest as a predictor of being a ‘pain non-responder’: readiness to change. Patients who reported being in the precontemplative (e.g., “All of this talk about how to cope better is a waste of my time”) or contemplative (e.g., “I’m starting to wonder whether it’s up to me to manage my pain rather than relying on doctors”) stage of change had a 9-fold increased risk (95% confidence interval between 2 to 49-fold risk) of being categorized as a ‘pain non-responder’ compared to patients in the action/maintenance stage (e.g., “I have started to come up with strategies to help myself control my pain”).
So what does this mean? It seems that the more open a patient is to taking charge of their pain problem, the more likely they will experience pain relief. Pretty cool, huh? If patients believe that someone else is going to fix their pain problem, they are much less likely to experience improvement in their pain. So how does that impact our practice? Well, it suggests that screening for readiness to change prior to treatment could be a game-changer. Once screened, those who are categorized as precontemplative or contemplative might benefit from 1) motivational interviewing to facilitate a shift in perspective/readiness, and/or 2) education regarding how these perceptions may potentially impact their ability to fully benefit from pain rehabilitation treatment. Important to also consider some limitations from this study that can be improved upon in future research. For example, we did not have a control group and although we use statistics to control for nonrandom dropout across time, it still would have been ideal to retain all patients at each time point. Moreover, it is quite possible this could apply across pain treatment settings (e.g., outpatient), but these readiness-enhancing approaches must be tested (and across settings). So, let’s inform our patients that their greatest partner in the road to pain improvement is themselves!
About Laura Simons
Laura is a PhD clinical psychologist who spent her initial faculty years being inspired by young people reclaiming their life from debilitating pain. She is now an Associate Professor in the Department of Anesthesiology, Perioperative, and Pain Medicine at Stanford University School of Medicine (Palo Alto, California, USA), and an attending psychologist at the pediatric pain management clinic at Stanford Children’s Health. She leads a research group (Biobehavioral Pediatric Pain Lab) that focuses on understanding and treating chronic pain in children and adolescents using a biopsychosocial framework. Research projects in the lab encompass psychological assessment, interdisciplinary outpatient pain treatment, and a psychophysiology/brain imaging program to uncover brain circuit alterations in youth with chronic pain.
Children With Chronic Pain: Response Trajectories After Intensive Pain Rehabilitation Treatment (2018). Laura E. Simons, Christine B. Sieberg, Caitlin Conroy, Edin T. Randall, Julie Shulman, David Borsook, Charles Berde, Navil F. Sethna, Deirdre E. Logan. J Pain, 19 (2), 207 – 218.