1 Psychosocial Considerations for the fontan patientStacey Morrison, Psy.D Clinical Psychologist Heart Institute Neurodevelopmental Clinic Division of Behavioral Medicine and Clinical Psychology Cincinnati Children's Hospital Medical Center
2 Psychosocial FunctioningPsychosocial functioning is an umbrella term that includes both psychological and social factors, as well as their interplay. Psychological factors include mood, anxiety, and neuro-cognitive functioning Social factors include social support (family, peers, influential others), financial stability, and social role fulfillment (school, work, community groups)
3 Psychosocial ConsiderationsThe presence of a serious congenital heart defect, with Fontan palliation often results in an enormous emotional and financial strain on families. Ongoing medical care and routine disruptions can have profound impact on a early life experiences that resonate across a lifetime. Children with complex CHD are at risk of neurological and cognitive impairment and Fontan patients may be especially vulnerable. As adults, Fontan patients remain at risk for cardiac and non-cardiac effects of CHD and face significant life stressors that may place them at increased risk for psychological distress.
4 Typical Neurodevelopmental issuesLower IQ and Math and Language Academic Achievement Impaired language skills and written expression skills Metacognitive Deficits: flexible attention shifting, planning, organization, and time management skills Behavior Regulation: impulsivity, poor self monitoring Diminished fine and gross motor skills Slowed processing speed
5 Diagnostic Rates for CHD and FontanApproximately 1 in 3 North American adults with CHD experience difficulties with depression and/or anxiety. Adolescents with single-ventricle congenital heart disease (CHD) have a fivefold increase in rates of anxiety disorders and attention-deficit/hyperactivity disorder (ADHD) compared with healthy control patients Adults living with CHD may have a significantly higher risk of post-traumatic stress disorder (PTSD) than the general population.
6 Mitigating Psychosocial Factors for AdultsBody image or perceptions of scarring Perceived health status or disease severity Poor social support/social anxiety Communication skill deficits Perceived lack of independence Impulsivity/poor problem solving Difficulty maintaining employment Financial Strain
7 Case Presentation: Medical HistorySara is a 15 yr-old girl with Transposition of the Great Arteries, left atrioventricular (AV) valve atresia, hypoplastic left sided RV, unrestricted VSD and systemic right sided LV. Sara had a series of surgeries culminating in a fenestrated Fontan. She has a long history of feeding difficulties and required a G-Tube in early childhood. She has an extensive medication regimen, which she can verbalize and is reported to take consistently.
8 Case Presentation: PsychosocialSara lives in a small rural town with her 16 yr. old brother and her mother. She does not have contact with her father. She has friends at school, but has limited social interactions outside of school. The family does not have extended family supports, and limited social supports in the area. She attends 9th grade at a public high school. Particular academic concerns include reading comprehension, math reasoning, and retention of complex academic information.
9 Case Presentation: Psychosocial Cont’dShe has missed over 50 days for medical reasons, which contributes to lost instruction time, compiled assignments, and social isolation. Sara presents to cardiology due to complaints of fluttering heart and body pain. Sara denies symptoms of anxiety or depression. However, Sara’s mother reports that she was "panting" and felt panicky. Sara is described as self-consciousness, and often keyed-up or on-edge. She worries about missing assignments. She feels as though she is not a capable as peers, and does not like to ask her teachers for help.
10 Case Presentation: EvaluationSara underwent a multidisciplinary evaluation with psychology and academic testing. Behavior observation: she presents as cooperative and polite. She is soft spoken, with fleeting eye contact, and signs of self-doubt and hesitancy. Expressively Sara had difficulty expanding on verbal responses or providing supportive detail. She demonstrated difficulty with sustained attention and distractibility. When confronted by failure or feedback, Sara appeared embarrassed, even tearful at times.
11 Evaluation Results As measured by the WISC-V, Sara’s FSIQ (SS=82) fell in the Low Average range when compared to other children her age. Standardized Academic measures indicate average skills in the areas of phonetic decoding, reading accuracy, sentence composition, spelling, and numerical sequencing. She demonstrated low average to low skills in the domains of reading comprehension, reading fluency, math calculation, math reasoning, and listening recall.
12 Evaluation Results Diagnostic observations and behavioral reports significant executive dysfunction and attention dysregulation consistent with a DSM-V diagnosis of Attention-Deficit/Hyperactivity disorder, Predominantly inattentive presentation. Ratings by Parent, Teacher and Sara herself, indicate significant levels of Anxiety and Somatic Complaints. Sara endorsed symptoms of dysphoria, test anxiety, and sense of inadequacy, consistent with a DSM-5 diagnosis of Generalized Anxiety Disorder.
13 Case Presentation: Care PlanProvided psychoeducation regarding the testing and diagnosis as well as the nature of Sara’s specific challenges. Encouraged mother to pursue interventions as appropriate, including individual therapy to address stress and coping and school interventions. The education consultant collaborated with Sara’s school team to create a supportive intervention and accommodation plan. Ultimately, the school agreed to reduce Sara’s school week with attendance for partial days on Mondays, Wednesday, and Fridays. In addition, the teachers will create a list of required assignments to help Paris complete enough work to demonstrate mastery across content subjects.
14 Integrating Psychosocial Care with Medical CarePatient/family education is an important part of successful coping. Encourage patients to talk about concerns and engage in problem solving. Patients who have access to mental and emotional supports, with skill building, typically experience reductions in stress, depression and anxiety, as well as improved sleep and life satisfaction. A psychologist or mental health professional can work with patients to develop skills to feel better, communicate better with family, friends and health care team and live a more fulfilling life.