Psychological Consultation in Pediatric Solid Organ Transplantation

Abstract

Due to advancements in treatment and survival, solid organ transplantation is a common intervention for pediatric patients with end-stage organ disease. Despite improved medical outcomes overall, pediatric solid organ transplantation is accompanied by risks of morbidity and mortality, along with daily medication and treatment demands. As such, a subset of patients and families experience significant psychological stressors throughout the transplant process, from transplant evaluation and listing to years post surgery. Pediatric transplant psychologists play a critical role in the care of these young people and their families. This chapter provides a review of psychological consultation in pediatric solid organ transplantation and includes both medical and psychosocial overviews, a review of evidence-based assessments and interventions for common referrals, and tips and tools, including handouts and resources, for working in pediatric solid organ transplantation.

Appendices

Appendix 1: Sample Pretransplant Psychology Evaluation Template

PRE-TRANSPLANT PSYCHOLOGY EVALUATION

MEDICAL HISTORY:

MEDICAL COPING, ADHERENCE, KNOWLEDGE.

Patient Regimen Knowledge/Adherence:

Name Medical Condition:

Name Medications, Dosing, Timing, Function:

System for Remembering Medications:

Adherence Rating (Self):

Adherence Rating (Parent):

Diet:

Appointments:

Patient Transplant-Specific Knowledge:

Why transplant?

Process?

Post-transplant treatment demands?

Risks?

Not cure?

Allocation of Responsibility for Health Management Tasks:

Remembering medications?

Filling/organizing pillbox?

Refilling prescriptions?

Noticing health changes?

Contacting medical team, making appointments?

Providing medical updates during medical visits?

Patient Coping with Illness, Procedures, Hospitalizations and Transplant:

Patient Motivation For/Desire to be Listed:

Problems Taking Medications:

Patient Communication/Decision-Making Preferences:

Patient Coping Strategies that are Helpful:

DEVELOPMENTAL HISTORY:

Complications of pregnancy or delivery:

Developmental milestones:

PATIENT AND FAMILY MENTAL HEALTH HISTORY :

Patient Mental Health History (Previous Diagnoses, Treatment, Hospitalizations):

Family Mental Health Diagnoses:

PATIENT CURRENT PSYCHOLOGICAL FUNCTIONING :

• MOOD: Mood (___/10), Concentration, Energy, Anhedonia, Worthlessness, Hopelessness, Fatigue, Appetite, Sleep, Mania, SI

• ANXIETY: Worries (___/10), Phobias, Habits/Tics, Panic Attack, O/C, Separation.

• PSYCHOSIS: A/V H, Delusions, Paranoia

• SUBSTANCE: Alcohol, Cigarettes, Drugs, OTC, Rx, Etoh, Marijuana, Crack/Cocaine, Sedatives, Inhalents – Abuse/Depend

• BEHAVIOR/ATTENTION: ADHD, PICA, Behavior Problems, Developmental Disabilities

• TRAUMA: Physical, sexual, neglect, PTSD, CPS involvement

• SI/RISK BEHAVIORS: SI Thoughts, SIB, Sexually Active (Y/N), Dangerous Behaviors, Aggression, Stealing, Truancy

RISK ASSESSMENT :

ACADEMIC FUNCTIONING:

Current Grade:

School:

School grades:

School concerns/support:

Special education services:

School support specific to transplant:

FAMILY AND SOCIAL FUNCTIONING :

Lives with:

Family relations/stressors:

Hobbies/activities:

Peers:

Peers aware of/response to transplant:

MENTAL STATUS EXAM.

SUMMARY/IMPRESSIONS.

DSM-5 DIAGNOSES (IF APPLICABLE).

RECOMMENDATIONS.

Online Appendix 2: Sample of Assessment Measures Commonly Used in Pediatric SOT

Abbreviation	Measure name	Reference	Construct	# of items	Who completes?	Validated SOT?	Brief description
Screening measures
PAT2.0	Psychosocial Assessment Tool	Pai et al. (2008)	Psychosocial functioning	57 items, 7 subscales	Parent	Yes	Screener for psychosocial risk for families of children with a variety of chronic illnesses
PedsQL 3.0 Transplant Module	Pediatric Quality of Life Inventory	Weissberg-Benchell et al. (2010)	Health-related QoL	46 items, 8 subscales,	Child and parent	Yes	Child self-report and/or parent-proxy report of children’s SOT specific health-related QoL
CHQ-PF-50/CF-87	Child Health Questionnaire Parent/Child Form	Landgraf, Abetz, and Ware (1996) and Landgraf and Abetz (1997)	Health-related QoL	50 items/87 items	Child & parent	Yes	Child self-report and/or parent-proxy report of children’s health-related QoL
CBCL	Child behavior checklist	Achenbach and Edlebrock (1993)	Psychological functioning	8 subscales, 118 items	Parent		Standardized parent report of behavioral problems and social competencies in children
PIP	Pediatric inventory for parents	Streisand, Braniecki, Tercyak, and Kazak (2001)	Psychological functioning	42 items, 4 subscales	Parent	Yes	Parent report of parenting stress related to caring for a child with a chronic illness
FAD	Family assessment device	Miller, Epstein, Bishop, and Keitner (1985)	Family functioning	60 items, 6 subscales	Parent		Parent report regarding the organization of the family, communication, and problem-solving
Adherence/barriers
AMBS	Adolescent Medication Barriers Scale	Simons and Blount (2007)	Barriers to adherence	17 items, 3 subscales	Child	Yes	Child self-report of perceived barriers to medication adherence
PMBS	Parent Medication Barriers Scale	Simons and Blount (2007)	Barriers to adherence	16 items, 4 subscales	Parent	Yes	Parent-proxy reported of child’s barriers to medication adherence
MAM	Medical Adherence Measure	Zelikovsky and Schast (2008)	Medication adherence	Interview, 4 domains	Child and parent	Yes	Semi-structured interview assessing medication knowledge and regimen adherence
Transition readiness
RTQ	Readiness for Transition Questionnaire	Gilleland, Amaral, Mee, and Blount (2012)	Readiness for transition	22 items, 3 subscales	Child and parent	Yes	Child and parent-reported transition readiness, responsibility/involvement in healthcare tasks
TRAQ	Transition Readiness Assessment Questionnaire	Sawicki et al. (2011)	Readiness for transition	29 items, 2 subscales	Child		Skill-focused tool to assess readiness for transition to adult healthcare
TRS:A/YA	Transition Readiness Scale	Fredericks et al. (2010)	Readiness for transition	38 items, 4 subscales	Child	Yes	Adolescent perceived and demonstrated self-management skills and transition readiness
TRS:P	Transition Readiness Scale	Fredericks et al. (2010)	Readiness for transition	36 items, 5 subscales	Parent	Yes	Parent perception of their adolescent’s skills and transition readiness
ATR-PF/CF	Allocation of Treatment Responsibility Scale	Pai et al. (2010)	Allocation of responsibility	18 items, 3 subscales	Child and parent	Yes	Child and parent-reported distribution of treatment tasks across family members

Online Appendix 3: Sample Procedural Plan (PICC Dressing Change)