Tag Archives: health related quality of life

Dr. Bonney Reed: Optimizing Quality of Life in IBD

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We had a terrific lecture given to our group by Dr. Bonney Reed. She is a pediatric psychologist with a clinical and research focus on children with inflammatory bowel disease. Our group has worked closely with Dr. Reed for many years. Many of her slides are included below along with my notes; my notes may contain errors in transcription and in omission.

  • GI symptoms may begin as the result of organic disease (e.g., IBD). Anxiety and chronic activation of the stress response system may lead to alterations in the brain, spinal cord, and gut increasing the load of GI symptoms. In turn, distress associated with GI symptoms may contribute to anxiety or depressed mood, creating a cycle of worsening GI symptoms and overall psychological distress.
  • Consistent with a brain-gut axis model, individuals with IBD, compared to healthy controls, demonstrate dysfunction of the ANS indicative of a chronic stress response which is characterized by increased sympathetic nervous system (SNS) activity and reduced parasympathetic nervous system (PNS) activity
  • Psychological factors are the key factor for pediatric patients with IBD when self-rating their global health
  • Factors that contribute to an individual’s current QoL: symptom exacerbation, psychological functioning including stress, and family support.
  • Health-related quality of life factors: major life transitions (eg. graduating high school and needing to manage IBD at college), fatigue ( persists despite controlled inflammation), poor body image (especially with weight changing rapidly), a diminished self-perception or seeing oneself as less capable, comorbid functional abdominal pain (about a quarter of youth with IBD), and food restrictions that can interfere with daily quality of life.
  • Stress plays important role influencing (bidirectional) disorders of brain gut interaction (DBGI)
  • Dr. Reed’s research includes a longitudinal cohort of newly-diagnosed (w/in 45 days) pediatric patients with IBD. This cohort undergoes psychosocial assessment along with ANS assessment
  • Emotional reactivity indicates individuals with a ‘short fuse’ who take longer to return to normal.  Those with emotional reactivity are at increased risk for anxiety/depression.
  • Skin conductance response (SCR) can help determine autonomic nervous system (ANS) dysfunction.  It is a measure of sympathetic arousal and stress
  • Stressful life events increase the rates of depression and correlate with skin conductance at medium and high levels
  • Within this model, Dr. Reed’s research focuses on the hypothesis that autonomic dysfunction is indicative of a chronic stress response. This, in turn, contributes to increased sympathetic nerve activity and decreased parasympathetic activity. This contributes to symptoms of anxiety and depression as well as GI clinical symptoms, all of which lead to impairments in QoL. Addressing autonomic dysfunction may provide a mechanism by which to address all of these QoL drivers
  • ANS dysfunction (which is also seen in cyclic vomiting syndrome) can improve with biofeedback focused heart rate variability (HRV). HRV, in turn, is associated with increase inflammation
  • Preliminary data from breath pacer intervention has shown in improvement in multiple variables

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What to Expect After Pediatric Liver Transplantation: Cognitive Function and Quality of Life

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A recent study (D Ohnemus et al. Liver Transplantation 2020; 26: 45-56, editorial 9-11) examined health-related quality of life (HRQOL) and cognitive functioning approximately 15 years after liver transplantation (LT).

Study details:

Median age 16 years.  Original group was a SPLIT research cohort recruited from 20 centers and then tested at multiple time points; for this study, 8 sites of the original 20 were included.  It is noted that patients with serious neurologic injury were excluded. Among an initial group of 108, there were 79 available for potential enrollment.  In this group, 65 parent surveys were completed and 61 child surveys.

Key findings:

  • For cognitive and school functioning, 60% and 51% of parents reported “poor” functioning, respectively (>1 SD below the health mean).  41% of children rated their cognitive function as poor.
  • Adolescents’ self-reported overall HRQOL was similar to that of healthy children; in contrast, parents rated their teenage children as having significantly worse HRQOL than healthy children in all domains.
  • The cognitive score in the poor functioning group at the latest time point was lower than at first time point measurement (ages 5-6 years and at least 2 years after LT), “suggesting that difficulties intensified in adolescence for those who have problems in early childhood.”
  • Almost half had received special educational services.

The editorial notes that the PedsQL Cognitive Functioning Scale scores used by the investigators were considered subjective.  “The more objective PedsPCF scores fell within the normal range.”

My take: This report indicates that a majority of children are likely to have some cognitive deficits and many are likely to have reduced HRQOL following liver transplantation; in addition, if these problems are detected at a younger age, they are likely to persist.

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Understanding the “Rashomon Effect”

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An interesting commentary (GM Ronen, DL Streiner. J Pediatr 2016; 179: 17-18) discusses the “Rashomon” effect and how this can relate to studies which show differences between children with health problems and their parents’ perception of how they are doing.

“In this famous Japanese tale, set in the 12th century, a notorious bandit attacked a samurai and his wife in the woods.”  Afterwards, all of the accounts of the incident by the participants were widely discrepant. “When the tale is over, the reader realizes that even though none of the version is a truthful objective account, all must be true at least from the character’s own unique perspective.”

In medical studies with children and their parents, different versions of the truth can be due to many factors:

  • Depression distortion hypothesis –raters with depression tend to score poorer on numerous health variables
  • Disability paradox –“some persons with impairments, against all odds, are satisfied with their life and rate their health similar to typical children”
  • Parents may also be affected by the emotional impact of their child’s health problem even when the problem is well-controlled

My take: This short commentary has a lot to say about understanding why a person with a medical problem may rate their health much better or much worse than an outside observer would expect.

Penobscot Narrows Bridge, Maine

Penobscot Narrows Bridge, Maine