Opportunities for Trauma-Informed Medical Care in Cystic
Fibrosis
To the Editor:
People living with Cystic Fibrosis (PwCF) face a lifetime of potentially
traumatic medical experiences. These experiences can range from invasive
medical treatments (e.g. venipuncture, nasogastric tube placement) to
daily illness-related events (e.g. illness related bullying). These
experiences place PwCF at high risk for a type of posttraumatic stress
called Medical Traumatic Stress (MTS)[1]. With the growing
recognition of the high prevalence and impact of MTS, we anticipate that
cystic fibrosis care teams may soon be tasked with integrating
trauma-informed medical care into their clinical practices. CF care
teams are well poised to prevent and screen for MTS because they 1)
create the environment for many illness-related experiences; 2) have
established workflows for mental health screening; and, in many cases,
3) have trusting relationships with PwCF and their families. Here, we
seek to highlight the opportunities for implementing trauma-informed
medical care within the cystic fibrosis-specific context.
MTS is defined as the psychological and physiological responses of
children and their families to pain, injury, serious illness, medical
procedures, and invasive or frightening treatment experiences[2].
MTS is common in PwCF – 55% of these youth report experiencing
potentially traumatic medical experiences and 30% report MTS
symptoms[1]. MTS symptoms have the potential to impact medical care,
health outcomes and quality of life[3].
While highly effective modulator therapies may decrease the frequency
and severity of medical care, PwCF have identified these therapies as an
additional source of potentially traumatic experiences[4]. New
potentially traumatic medical experiences in modulator-eligible PwCF can
include lost sense of purpose as their identity shifts from a “sick”
person to a “well” person; survivor guilt from benefiting from
therapies not available to others; and financial distress as they face
planning for a longer than anticipated life expectancy [4]. The
challenge of navigating the healthcare system, such as advocating with
care teams and insurance companies, has been identified as potentially
traumatic by PwCF, particularly those who are
modulator-ineligible[4].
A trauma-informed approach to medical care may be helpful for cystic
fibrosis care teams to mitigate MTS. The Pediatric Psychosocial
Preventive Health Model (PPPHM) provides a framework for tiered
implementation of trauma-informed medical care[5]. It includes
recommendations for universal practices gauged towards all
children and families, targeted approaches for those at high risk
of developing MTS, and treatment for those with severe,
escalating, or persistent MTS symptoms (Figure 1).
Universal MTS interventions for PwCF include prevention and screening.
Preventive interventions can include MTS awareness education for all
PwCF, family members of PwCF and cystic fibrosis care team members. This
education can highlight approaches to modifying potentially traumatic
medical experiences and identifying MTS symptoms that indicate the need
for further support. Universal systems interventions may also include
the implementation of workflows to minimize the traumatic potential of
healthcare experiences (e.g. workflows to minimize needle distress with
comfort positioning, numbing cream, and distraction as part of standard
care. Care teams can also integrate shared decision-making processes to
optimize patient perception of control and implement systems that
facilitate communication between cystic fibrosis care team and PwCF.
While annual mental health screening for depression and anxiety is the
current recommendation for all PwCF, healthcare providers should
consider integrating routine MTS screening into their practice.
Screening workflows can include screening for patient risk factors and
MTS symptoms, as well as family member symptoms of MTS. Currently, there
are no screening tools designed to specifically capture the cystic
fibrosis experience of MTS; however, acute stress screeners such as the
Acute Stress Checklist for Children can aid in the identification of
MTS, thereby guiding providers on who to refer for further mental health
assessments or support. One common concern regarding screening for MTS
is managing the burden of time as well as supporting those PwCF who
screen at-risk. Thus, in planning for MTS screening, teams ought to
consider the time required for screening, appropriate training for those
performing the screening, and the development of a clear workflow for
management and referrals. While these barriers require a thoughtful
approach to processes and care, the benefits outweigh the consequences
of not screening. MTS is present for many regardless of if screening
occurs and screening allows the medical team to optimize overall
healthcare.
The second tier of the PPPHM recommends targeted approaches to MTS for
those with risk factors or early symptoms. Possible MTS risk factors in
PwCF include parent posttraumatic stress disorder, high daily medication
burden, and emergency room and intensive care [1]. Interventions for
PwCF who have MTS risk factors or early symptoms may include increasing
support during potentially traumatic medical experiences (e.g. having a
child life expert prepare a patient before a procedure); altering the
medical care plan when possible (e.g. minimizing daily medication
burden); educating family members on what to say to PwCF before, during,
and after potentially traumatic medical experiences; and integrating
patient-specific resilience factors into individualized coping and
support plans. In some cases, brief therapeutic psychological
interventions may help address specific symptoms (e.g., targeted CBT
needle phobia interventions, behavioral sleep interventions, brief
psychoeducation interventions).
The third tier of the PPPHM recommends treatment for MTS symptoms that
impact medical care or impair daily functions. PwCF with significant MTS
symptoms should be referred to a mental health provider with expertise
in the treatment of trauma symptoms. Ideally, the provider should have
familiarity with chronic medical conditions, and, ideally, cystic
fibrosis specifically. While we do not yet have evidence-based
MTS-specific interventions for PwCF, approaches may include cognitive
behavioral techniques such as restructuring of hospital-related
thoughts, behavioral activation, or trauma-focused cognitive behavioral
therapy. Mental health providers could also collaborate with families
and cystic fibrosis care teams to develop an individualized plan for
minimizing re-traumatization and reducing the impact of MTS on medical
care and quality of life.
In summary, given the substantial impact that MTS can have on PwCF,
cystic fibrosis care teams should consider integrating trauma-informed
approaches into the medical care of PwCF to optimize overall health
(including mental health). Comprehensive approaches to MTS mitigation in
PwCF include 1) universal awareness, prevention, and screening, 2)
targeted interventions for those at high risk, and 3) individualized MTS
treatment administered by mental health professionals. To optimize
cystic fibrosis care with attention to MTS, future research should
prioritize more definitive identification of MTS risk factors, the
development of validated cystic fibrosis-specific MTS screening tools,
the creation and dissemination of evidence-based MTS prevention
programs, and the development of evidence-based MTS mental health
interventions tailored to PwCF.
Figure 1: Application of the Pediatric Psychosocial Preventative
Health Model to Cystic Fibrosis. Adapted with permission from the
Center for Healthcare Delivery Science at Nemours Children’s Health
System 2018-2019. All rights reserved[5].