Pediatr Transplantation 2008: 12: 57–66 Copyright Ó 2007 Blackwell Munksgaard

Pediatric Transplantation
DOI: 10.1111/j.1399-3046.2007.00785.x

Pediatric Transplant Rating

Instrument – A scale for the pretransplant
psychiatric evaluation of pediatric organ
transplant recipients
Fung E, Shaw RJ. Pediatric Transplant Rating Instrument – A scale for Ernest Fung1 and Richard J. Shaw2
the pretransplant psychiatric evaluation of pediatric organ transplant 1
California School of Professional Psychology/Alliant
recipients. International University, San Francisco, CA, USA,
2
Pediatr Transplantation 2008: 12: 57–66. Ó 2008 Blackwell Munksgaard Division of Child Psychiatry, Stanford University
School of Medicine, Palo Alto, CA, USA
Abstract: Although the majority of pediatric solid organ transplant
centers in the United States employ psychosocial criteria to assess the
suitability of potential transplant candidates, there are no standardized
pretransplant psychosocial assessment measures. Assessment scales that
have been developed were designed for adult transplant recipients and
are not suitable for use in the pediatric population. The P-TRI was Key words: transplant – pediatric – candidate
developed to address this gap in the pediatric pretransplant psychoso- selection – rating scale
cial evaluation. It is intended to identify areas of psychosocial vulner-
Richard J. Shaw, Division of Child Psychiatry,
ability that may be associated with poor treatment adherence and to
Stanford University School of Medicine, 401 Quarry
facilitate the development of informed and focused psychosocial inter- Road, Palo Alto, CA 94305-5719, USA
ventions for pediatric patients before and after transplant surgery. Items Tel.: 650-723-5457
on the rating instrument were generated based on a review of the major E-mail: rjshaw@stanford.edu
correlates of treatment adherence in the pediatric population. Data are
currently being collected for further reliability and validity analyses. Accepted for publication 29 June 2007

Psychosocial assessment plays an important role ically evaluates psychosocial risk factors that
in evaluating potential solid organ transplant may be relevant for potential child and adoles-
candidates based on research that has shown a cent organ transplant recipients. The instrument
clear relationship between psychosocial factors is modeled on the PACT and TERS but
and post-transplant outcomes, in particular those specifically adapted for the pediatric population.
related to treatment adherence (1, 2). Although Items in the P-TRI were developed based on a
most transplant centers in the United States literature review of the relevant pediatric risk
employ psychosocial criteria during candidate factors, specifically those known to be associ-
selection, there are no standardized or well- ated with treatment adherence. The P-TRI is
validated psychosocial assessment criteria. In the intended initially to help identify and describe in
field of adult organ transplantation, there are a standardized manner the potential psychoso-
two assessment instruments generally used for cial risk factors prior to transplant surgery that
adult transplant patients, the PACT (3) and the may affect post-transplant outcome. It is also
TERS (4). There are, however, no standardized hoped that systematic identification of these risk
psychosocial instruments available for the pedi- factors will suggest potentially useful psychoso-
atric organ transplant population. cial interventions that may enhance treatment
To address this current gap, we have devel- outcomes.
oped the P-TRI, an assessment tool that specif-
Existing pretransplant evaluation rating scales
The Psychosocial Assessment of Candidates for
Abbreviations: PACT, Psychosocial Assessment of Candi- Transplantation
dates for Transplantation; P-TRI, Pediatric Transplant
Rating Instrument; TERS, Transplant Evaluation Rating The PACT is a 10-item rating scale developed by
Scale. Olbrisch et al. (3) for use in adult transplant

57
Fung and Shaw

organ transplant recipients. The PACT has high services, and higher healthcare costs (15–17).
inter-rater reliability (96%), and all items corre- Non-adherence to the medical regimen has also
late with clinical ratings. It has been demon- been identified as one of the most commonly
strated that the PACT ratings were not related to identified sequelae of psychosocial impairment in
social desirability, suggesting that even if patients a transplant recipient (18). One important differ-
presented themselves in a socially acceptable and ence between adult and pediatric organ trans-
desirable fashion, clinical observations were not plant recipients is that the pediatric transplant
likely to be influenced (5). Another study has team generally holds the patientÕs primary care-
shown that the PACT has concurrent validity taker responsible for managing the patientÕs
with standard measures such as the Minnesota medical treatment. Therefore, apart from evalu-
Multiphasic Personality Inventory and Beck ating psychosocial factors that are conducive to
Depression Inventory (6). positive disease management behavior, the P-
TRI includes an evaluation of the primary
The Transplant Evaluation Rating Scale caregiversÕ ability to manage and supervise their
childÕs post-transplant treatment regimen.
The TERS is a 10-item rating scale also deve-
To generate items on the rating scale, we
loped for adult organ transplant recipients (4). It
compiled correlates of treatment adherence in the
has been demonstrated to have a good inter-rater
pediatric population based on a comprehensive
reliability (3, 7) and internal consistency (7).
review of the literature of treatment adherence
Furthermore, highly significant correlations have
and chronic disease management in this popula-
been found between the pretransplant TERS
tion. medline and psychinfo were used to search
scores and the level of treatment adherence,
for studies that explore the relationships between
substance abuse, and health behaviors, as well as
psychosocial factors, treatment adherence, and
a significant correlation between the TERS and
post-transplant outcomes. The cut-off date for
quality of life, all measured one to three years
the literature search was June 2006.
post-transplant (3). It has been utilized in other
The P-TRI emphasizes the need for a collab-
clinical studies (8, 9).
orative and multidisciplinary approach in assess-
Both the PACT and the TERS have reason-
ing young patients and their families. Through
able internal consistency and comparable inter-
our experience in the psychosocial assessment of
rater reliability (10). However, the PACT is
organ transplant candidates, we have grouped
more flexible in both the range of each rating
and categorized these correlates into the follow-
scale and the manner in which the summary
ing subscales to increase its utility for use in the
score is determined (11), while TERS showed
medical setting:
better inter-rater reliability than the PACT
across more domains and better relationship
with outcome variables (12). While both mea- Illness factors
sures serve as helpful tools for the adult trans- Illness factors related to treatment adherence
plant patient population, pediatric transplant include the patient’s and familyÕs knowledge of
candidates were not considered in the design of the transplant procedure, attitude towards trans-
these instruments. plant, and level of motivation for transplant.
Knowledge about medical treatment, belief in its
Pediatric Transplant Rating Instrument importance, and therapeutic motivation have all
The P-TRI is a 17-item rating scale designed to been correlated with higher rates of adherence
identify potential psychosocial risk factors associ- (19, 20). In addition, adolescents are more likely
ated with post-transplant treatment adherence in to comply with therapeutic regimens that they
the pediatric transplant population (see Appen- believe are likely to be effective (20). To provide
dix). Design of the P-TRI incorporates both a ratings in these areas, the clinician should inquire
developmental perspective as well as psychoso- as to whether the patient and family have been
cial and familial factors that have been shown in given a full explanation about the transplant
the literature to correlate with treatment adher- process, and whether they appear to understand
ence in medically ill children and adolescents (13, the major medical and surgical issues related to
14). The emphasis on treatment adherence used the surgery. If there is a gap between knowledge
to develop the P-TRI is based on the finding that of the transplant procedure and the post-trans-
non-adherence with treatment is the leading plant medical management, the clinician may
cause of graft loss after the first three months recommend an additional meeting with the
post-transplant in all age groups and may lead to transplant team to remediate these deficits. The
increased rates of mortality, utilization of health clinician should also assess the general attitude

58
 Pediatric Transplant Rating Instrument

and motivation of the patient and family towards Ratings of past psychiatric history on the
the proposed transplant surgery. P-TRI are generally based on clinical interview
and review of medical records. If there is current
History of treatment adherence psychiatric illness in the family, the clinician
should assess the severity of the illness, and
The past history of treatment adherence with
establish whether the affected patient or family
respect to medications, medical appointments,
member is currently participating in appropriate
and dietary and exercise prescriptions has been
psychiatric treatment, or if not, whether they are
shown to be predictive of future patterns of
willing to pursue treatment that may be recom-
treatment adherence (21). Factors that may raise
mended prior to surgery.
concern about potential future difficulties with
treatment adherence include a past history of
Substance abuse history
forgetfulness, resistance to taking medications
due to concerns about side effects, or a pattern of Alcohol and substance abuse is often cited as
acting out behavior that is expressed by the child either an absolute or a relative contraindication
refusing to take their medications (17, 20, 22–26). to organ transplantation in the adult transplant
Ratings of past adherence history are generally population (31, 32), since there is evidence that
based on information obtained from the patientÕs substance abuse history may be associated with
medical record but should also include reports higher rates of non-adherence (33). Within the
from the members of the transplant and medical pediatric population, issues of substance abuse
team and primary caretakers. The clinician are also pertinent, particularly in the adolescent
should also assess the patientÕs and familyÕs level population. Furthermore, if there is a parental
of acknowledgment and responsibility for any history of substance use, in particular if there are
past history of poor adherence to treatment. current active symptoms of abuse, there may be
serious concerns about the ability of the family to
Past psychiatric history adequately supervise the post-transplant treat-
ment regimen. If there is current evidence of
The presence of pretransplant psychiatric symp-
alcohol or substance abuse in the patient or
toms and disorders is often cited as a major
family members, the clinician should assess the
contraindication to organ transplantation in
severity of the abuse, and establish whether the
adult patients due to its relationship with treat-
affected patient or family member is currently
ment adherence (10). For example, anxiety,
participating in appropriate substance abuse
anger, hostility, denial, and depression have all
treatment, or if not, whether they are willing to
been associated with poor treatment adherence
pursue recommended treatment.
(15, 27). Studies of pediatric transplant recipients
have also similar relationships with symptoms of
Family environment
anxiety and depression (17, 28). Pretransplant
psychiatric assessment should include a careful Much of the responsibility of treatment adher-
review of current and past psychiatric disorders ence lies with the patientÕs parents or primary
and their potential relevance during the trans- caregiver. Adequate parental resources have been
plant process. Parental psychiatric history is also suggested to buffer the effects of stress on
a pertinent factor since parental psychopathol- psychosocial functioning and perceived social
ogy has the capacity to adversely affect the support seems to have a predictive effect on
parentsÕ ability to support and supervise their adaptation to chronic illness in adolescents (34,
childÕs treatment. Areas of assessment related to 35). The presence of a supportive family envi-
parental psychopathology should include paren- ronment has been shown to be associated with
tal coping, family support, family communica- increase treatment adherence while, by contrast,
tion, and parental supervision which are factors family instability has been associated with non-
that have been shown to be correlated with adherence (36, 37). This section of the P-TRI
treatment adherence (29). Cognitive issues primarily focuses on the transplant recipientÕs
should also be considered since cognitive deficits family environment and its relevance to support-
related to end-stage organ failure may impair the ing post-transplant treatment. Ratings are made
patientsÕ ability to comply with complex post- based on the availability and willingness of
transplant treatment regimens (10). Patients with family members to provide appropriate supervi-
cognitive impairments are at particularly high sion of the childÕs medical and medication
risk for non-adherence with treatment unless treatment. The P-TRI also rates the presence of
appropriate interventions are offered before and family conflict between family members, com-
after transplant surgery (30). munication style and ability to supervise their

59
Fung and Shaw

childÕs treatment. If there are currently significant may be plotted graphically to give a visual
conflicts or communication difficulties between representation of specific areas of concern that
family members, the clinician should explore may lead to recommendations for intervention.
with the family their willingness to engage in It should be noted that some of the items on
family therapy particularly if such issues are the P-TRI are age specific, for example, item #2
believed to have a potential adverse effect on the (‘‘Patient Motivation for Transplant’’) is consid-
childÕs pattern of treatment adherence. ered more suitable for assessing older pediatric
patients. This issue highlights the need to assign
Psychosocial and financial support different weightings to items for assessing candi-
dates in different age groups [with parental issues
Multiple previous studies have documented the
being more salient for younger children (40)]. At
importance of psychosocial and financial support
this current juncture, the evaluator can utilize
for positive post-transplant outcomes. For exam-
his/her clinical expertise to decide if it is appro-
ple, it has been suggested that close peer
priate to rate a particular item (e.g., deciding to
relationships may help foster good treatment
forgo item #2 when assessing a three-year-old
adherence in adolescent transplant patients (20).
transplant candidate). If the evaluator decides
The presence of social support has also been
not to rate a particular item, the reasons should
shown to improve treatment adherence in cardiac
be specified, as information on missing and
transplant recipients while the provision of emo-
irrelevant items will be utilized in further devel-
tional and practical support by family and
opment of the instrument.
friends has repeatedly been found to promote
As P-TRI is primarily an information-gather-
treatment adherence (1, 15). Optimally, the
ing tool at this stage, the total score of all the
family should also have adequate financial
items is not utilized as a global or final rating.
resources to support the transplant procedure.
Hence, age-specific items that are not rated
This section of the P-TRI assesses the quality of
should not significantly affect the current
financial, logistical and social support available
intended use of the P-TRI.
to the family. Deficits in any of these areas may
lead to recommendations for additional
Future statistical analyses
resources to support the family during the
transplant process. The P-TRI also rates the To perform reliability and validity investigations,
quality of peer relationships and the level of data collected by the P-TRI will be analyzed with
participation in age appropriate social activities, the following list of variables that includes both
which are generally believed to be good indica- health status indicators in addition to measures
tors of peer relationships and support (38). of adherence, with an understanding that both
are related but not identical, a common concep-
Relationship with the medical team tual confound reported by Johnson (41).
The quality of the relationship between adoles-
1. Serum immunosuppressant levels as objective
cent patients with a chronic medical condition
measures of treatment adherence.
and the health care provider has been shown to
2. Serum creatinine concentrations to be used as
have an effect on treatment adherence while
a potential clinical marker of graft dysfunc-
instability in this relationship may predict poor
tion.
post-operative treatment adherence (15, 39). The
3. Occurrence of episodes of both acute and
P-TRI rates the quality of the patient’s and
chronic rejection.
familyÕs relationship with the medical team. The
4. Graft loss.
presence of conflict or tension between the family
5. Number of inpatient hospital days/year due to
and the transplant team, in particular feelings of
graft complications.
anger or distrust, may lead to recommendations
6. Patient/parent report on treatment adherence.
to resolve these issues by facilitating a dialogue.
In addition, candidatesÕ gender, age, race/ethnic-
Rating directions
ity, living or cadaveric donor, type of transplant,
Transplant candidates are assessed on a Likert first or repeat transplant, and date of transplant
Scale. A score of 1 indicates a greater level of are recorded as part of the assessment process.
concern while a score of 4 indicates no concern This database will facilitate statistical analyses to
related to that item. Each item is accompanied assess the reliability and validity of the scale.
with a series of anchors to assist the clinician Principal components analysis will enable item
during the rating process. Scores on the P-TRI reduction and provide us with information on the

60
 Pediatric Transplant Rating Instrument

P-TRIÕs scale dimensionality. Through examin- screening potential transplant recipients, there is
ing the associations between ratings on the a relative lack of empirical data related to the
P-TRI and post-transplant outcomes, it will be ability to predict post-transplant treatment out-
possible to calculate the P-TRIÕs construct and come. Although there have been multiple studies
predictive validity. In addition to assigning that have examined the association between
weightings to items based on their suitability to specific risk factors and treatment outcome, there
different age groups, validity analysis can also are very few studies that have demonstrated a
help assign weightings to items that are shown to clear causal relationship between psychosocial
be more predictive of post-transplant outcomes. factors and graft survival. This is true within
Finally, the reliability of the instrument will be both the adult and pediatric transplant literature.
assessed by computing CronbachÕs alpha (42) on As we move on to the next phase of our study,
data collected from different raters and trans- when outcome data on the P-TRI become
plant sites. available, the relationships between the psycho-
social risk factors listed on the P-TRI and graft
Discussion
survival can be studied in a quantitative manner.
We believe empirical study of this nature has the
The P-TRI is the first clinical rating scale potential to contribute significantly to the re-
developed for the psychiatric assessment of search on clinical outcomes in the solid organ
potential pediatric solid organ transplant recip- transplant population.
ients. The scale was developed based primarily However, until empirically derived predictive
on a comprehensive review of the literature data become available, we understand that it
related to risk factors of treatment adherence in may be difficult for a transplant team to support
this population. In contrast to two existing a decision to withhold listing for transplant based
measures developed for adult transplant recipi- on the identification of factors that the team
ents, the P-TRI incorporates a developmental believes to be potentially associated with poor
perspective that is relevant to children with medical outcomes. Similar issues arise in assign-
chronic physical illness in addition to considering ing a priority level for transplant when compar-
important family issues that may affect the ing potential candidates with significant yet
transplant outcome. It is designed to identify different psychosocial risk factors. Should, for
areas of psychosocial vulnerability that may be example, a child from a family with significant
associated with poor treatment adherence in the family conflict or dysfunction be rated as more or
pediatric transplant population. At this point, in less suitable for transplant when compared with a
the absence of reliability and validity data, it is child with a past history of substance abuse. Due
not intended for the P-TRI to score or rank to the lack of empirical data on which to assign
patients, or to be used to determine eligibility for levels of medical risk related to specific psycho-
listing for transplant. Specifically, the P-TRI social risk factors, weightings have not yet been
does not have cut off scores that determine likely assigned to individual subscales or items on the
clinical outcome. Rather, the P-TRI should be P-TRI. Once the necessary outcome data are
used to identify areas of concern that may be available, we plan to assign weightings to items
amenable to intervention both pre and post- based on their predictive ability for positive post-
transplant surgery. By identifying areas of psy- transplant outcome, and establish a global rating
chosocial vulnerability that could lead to poor that would summarize the overall psychosocial
treatment adherence and post-transplant out- risk.
come, the P-TRI can play a role in providing the Another important clinical and ethical issue
transplant team with comprehensive information relates to the willingness of pediatric transplant
on potentially problematic psychosocial issues, centers to consider psychosocial risk factors
facilitating the development of informed and when making eligibility decisions. Although it is
focused psychosocial interventions for patients common practice for adult organ transplant
and their families before and after the transplant centers to use psychological criteria as a screening
surgery. To improve the psychometric properties measure in the selection of candidates – in
of the P-TRI, outcome data are currently being particular, criteria associated with alcohol and
collected for further reliability and validity anal- substance abuse – pediatric transplant centers
yses. have historically been less willing to employ such
The development of rating scales for solid criteria. Although the presence of significant
organ transplant recipients raises a number of psychological dysfunction in the childÕs family
important clinical and ethical issues. In trans- is known to be associated with higher rates of
plant centers that employ psychosocial criteria in non-adherence with treatment, there is a general

61
Fung and Shaw

reluctance to penalize the child by withholding a References

life saving medical procedure for a child based on 1. Dew MA. Behavioral factors in heart transplantation: Quality of
family psychopathology that may be beyond the life and medical compliance. J Appl Behav Res 1994: 2: 28–54.
control of the child (43). However, the common 2. Rudman LA, Gonzales MH, Borgida E. Mishandling the gift
dilemma that arises is that the transplant team of life: Noncompliance in renal transplant patients. J Appl Soc
does ultimately hold the family responsible for Psychol 1999: 29: 834–851.
3. Olbrisch ME, Levenson JL, Hamer R. The PACT: A rating
the childÕs adherence to the post-transplant scale for the study of clinical decision-making in psychosocial
treatment regimen, suggesting that some consid- screening of organ transplant candidates. Clin Transplant
eration of family risk factors does need to occur 1989: 3: 164–169.
prior to listing for transplant. In some cases, the 4. Twillman RK, Manetto CM, Wellisch DK, Wolcott DL.
transplant team may in fact advocate out of The Transplant Evaluation Rating Scale: A revision of the
home foster care placement in an effort to psychosocial levels system for evaluating organ transplant
candidates. Int J Psychosom 1993: 34: 144–153.
enhance outcome in children with a problematic 5. Carnike CLM. Is social desirability associated with symptom
family environment with the hope that the child distress in organ transplant candidates? Psychol Health Med
will at some time develop adequate skills to 1997: 2: 243–250.
independently manage their own treatment. This 6. Strouse TB. Psychological assessment of adult liver transplant
illustrates the need to obtain the necessary recipients. In: Busittil RW, Klintmalm GB, eds. Trans-
plantation of the Liver. Philadelphia, PA: W. B. Saunders
psychosocial information on the family, which
Company, 1996, pp. 297–306.
the P-TRI can provide, for the transplant team 7. Hoodin F, Kalbfleisch KR. How psychometrically sound is
design informed and focused psychosocial inter- the Transplant Evaluation Rating Scale for bone marrow
ventions to support both the patients and their transplant recipients? Int J Psychosom 2001: 42: 490–496.
families before and after the transplant surgery 8. Hoodin F, Kalbfleisch KR, Thornton J, Ratanathara-
to ensure optimal post-transplant outcomes. thorn V. Psychosocial influences on 305 adultsÕ survival after
bone marrow transplantation: Depression, smoking, and
The large discrepancy between the supply and behavioral self-regulation. J Psychosom Res 2004: 57: 145–154.
demand of available organs for transplantation 9. Grube M. Compliance and coping potential of cancer patients
will continue to create interest in ways to screen treated in liaison-consultation psychiatry. Int J Psychiatry Med
and prioritize potential transplant recipients. 2006: 36: 211–229.
Pediatric transplant teams who carry the respon- 10. Levenson JL, Olbrisch ME. Psychosocial screening and
sibility of listing candidates for surgery are in the selection of candidates for organ transplantation. In: Trzepacz
PT, Dimartini AF, eds. The Transplant Patient. Cambridge:
position of having divided loyalties including Cambridge University Press, 2000: pp. 21–41.
those towards patients, family members, the 11. Dew MA, Switzer GE, Dimartini AF, Matukaitis J, Fitz-
transplant team that will be responsible for gerald MG, Kormos RL. Psychosocial assessments and out-
post-surgical care, as well as to the general pool comes in organ transplantation. Prog Transplant 2000: 10:
of transplant candidates (44). Although it is the 239–259.
12. Presberg BA, Levenson JL, Olbrisch ME, Best AM. Rating
transplant teamÕs responsibility to advocate for
scales for the psychosocial evaluation of organ transplant
their own patients, allocation of an organ candidates. Comparison of the PACT and TERS with bone
ultimately affects the likelihood of others on the marrow transplant patients. Psychosomatics 1995: 36: 458–461.
waiting list receiving that organ. Although there 13. Shaw RJ, Taussig HN. Pediatric psychiatric pretransplant
are no hard and fast rules to guide the clinician evaluation. Clin Child Psychol Psychiatry 1999: 4: 353–365.
regarding these decisions, it is important that all 14. Shaw RJ, Demaso DR. Solid organ transplantation. Clinical
Manual of Pediatric Psychosomatic Medicine: Consultation
professionals who are involved in pretransplant with Physically Ill Children and Adolescent. Washington, DC:
candidate assessment should abide by the pro- American Psychiatric Publishing, Inc., 2006: pp. 205–226.
fessional ethics codes such as those published by 15. Bunzel B, Laederach-hofmann K. Solid organ transplanta-
the American Psychological Association and tion: Are there predictors for posttransplant compliance?
American Medical Association. Transplantation 2000: 70: 711–716.
Development of rating scales such as the P- 16. Shaw RJ, Palmer L, Blasey C, Sarwal M. A typology of
non-adherence in pediatric renal transplant recipients. Pediatr
TRI does have the potential to assist the trans- Transplant 2003: 7: 489–493.
plant team with some of these dilemmas. The 17. Siegel EG, Mahan JD, Johnson RS. Solid organ transplan-
existence of a reliable and well validated measure tation in adolescents: The blessing and the curse. Adolesc Med
to assess candidates for surgery would enhance 1994: 5: 293–309.
the evaluation process, particularly if data can 18. Collier JA, Nathanson JW, Anderson CA. Personality
demonstrate a relationship with specific item functioning in adolescent heart transplant recipients. Clin
Child Psychol Psychiatry 1999: 4: 367–377.
ratings and post-transplant outcome. In an effort 19. Baker C, Stern NP. Finding meaning in chronic illness as the
to further this research, data collection for both key to self-care. Can J Nurs Res 1994: 25: 23–36.
reliability and validity studies is in progress in the 20. Kyngas HA, Kroll T, Duffy ME. Compliance in adolescents
hope that the P-TRI may demonstrate clinical with chronic illness: A review. J Adolesc Health 2000: 26: 379–
utility as a predictive measure. 388.

62
 Pediatric Transplant Rating Instrument

21. Bunchman TE. Compliance in pediatric transplant. Pediatr 32. Levenson JL, Olbrisch ME. Psychosocial evaluation of organ
Transplant 2000: 4: 165–169. transplant candidates: A comparative survey of processes, cri-
22. Anderson BJ, Coyne JC. Family context and compliance teria, and outcomes in heart, liver, and kidney transplantation.
behavior in chronically ill children Developmental Aspects of Int J Psychosom 1993: 34: 314–323.
Health Compliance Behavior. In: Krasnegor NA, Epstein L, 33. Scharschmidt BF. Human liver transplantation: Analysis of
Johnson SB, Yaffe SJ, eds. Developmental Aspects of Health data on 540 patients from four centers. Hepatology 1984: 4:
Compliance Behavior. Hillsdale, NJ: Erlbaum, 1993: pp. 77– 95S–101S.
89. 34. Timko C, Stovel KW, Baumgarter M, Moos RH. Acute and
23. Brooks-Gunn J. Why do adolescents have difficulty adher- chronic stressors, social resources, and functioning among
ing to health regimes? In: Krasnegor NA, Epstein L, adolescents with juvenile rheumatic disease. J Res Adolesc
Johnson SB, Yaffe SJ, eds. Developmental Aspects of 1995: 5: 361–385.
Health Compliance Behavior. Hillsdale, NJ: Erlbaum, 1993: 35. Varni JW, Katz ER, Colegrove R, Dolgin M. Perceived
pp. 125–152. social support and adjustment of children with newly diag-
24. Holmbeck GN, Belvedere MC, Christensen M, et al. nosed cancer. J Dev Behav Pediatr 1994: 15: 20–26.
Assessment of adherence with multiple informants in pre- 36. Legraca AM, Schuman WB. Adherence to prescribed regi-
adolescents with spina bifida: Initial development of a multi- mens. In: Roberts MC, ed. Handbook of Pediatric Psychol-
dimensional, multitask parent-report questionnaire. J Pers ogy. New York, NY: Guilford Press, 1995: pp. 55–83.
Assess 1998: 70: 427–440. 37. Meichenbaum D, Turk DC. Facilitating Treatment Adher-
25. Williams PG, Holmbeck GN, Greenley RN. Adolescent ence. New York, NY: Plenum Press, 1987.
health psychology. J Consult Clin Psychol 2002: 70: 828–842. 38. Mathur R, Berndt TJ. Relations of friendÕs activities to
26. Shaw RJ. Treatment adherence in adolescents: Development friendship quality. J Early Adolesc 2006: 26: 365–388.
and psychopathology. Clin Child Psychol Psychiatry 2001: 6: 39. Dimatteo R, Dinicola D. Achieving Patient Compliance: The
137–150. Psychology of the Medical PractitionerÕs Role. Los Angeles,
27. Dew MA, Roth LH, Thompson ME, Kormos RL, Griffith CA: Pergamon General Psychology Series, 1986.
BP. Medical compliance and its predictors in the first year after 40. La Greca AM, Follansbee D, Skyler JS. Developmental
heart transplantation. J Heart Lung Transplant 1996: 15: 631– and behavioral aspects of diabetes management in youngsters.
645. Child Health Care 1990: 19: 132–137.
28. Shillitoe S, Christie M. Psychological approaches to the 41. Johnson SB. Chronic diseases of childhood: Assessing com-
management of chronic illness: The example of diabetes mell- pliance with complex medical regimens. In: Krasnegor NA,
itus. In: Bennett P, Weinman J, Spurgeon P, eds. Current Epstein L, Johnson SB, Yaffe SJ, eds. Developmental Aspects
Developments in Health Psychology. Amsterdam: Harwood of Health Compliance Behavior. Hillsdale, NJ: Erlbaum, 1993:
Academic Publishers, 1990: pp. 177–208. pp. 157–184.
29. Christiaanse ME, Lavigne JV, Lerner CV. Psychosocial 42. Cronbach LJ. Coefficient alpha and the internal structure of
aspects of compliance in children and adolescents with asthma. tests. Psychometrika 1951: 16: 297–334.
J Dev Behav Pediatr 1989: 10: 75–80. 43. Slater JA. Psychiatric aspects of organ transplantation in
30. Collins TL, Holden EW, Scheel JN. Cognitive functioning children and adolescents. Child Adolesc Psychiatr Clin N Am
as a contraindication to organ transplant surgery: Dilemmas 1994: 3: 557–598.
encountered in medical decision making. J Clin Psychology 44. Olbrisch ME. Ethical issues in psychological evaluation of
Med Settings 1996: 3: 413–422. patients for organ transplant surgery. Rehabil Psychol 1996:
31. Surman OS, Purtilo R. Reevaluation of organ transplanta- 41: 53–71.
tion criteria: Allocation of scarce resources to borderline can-
didates. Int J Psychosom 1992: 33: 202–212.

63
Fung and Shaw

Appendix
Pediatric Transplant Rating Instrument
1. P-TRI instructions
Description
The P-TRI is a 17-item semi-structured interview that is designed to assess relevant areas of risk for candidates for pediatric
solid organ transplantation. The scale is divided into seven primary categories that have been derived from review of the
scientific literature of risk factors related to outcomes for transplant recipients, with a particular focus on outcomes related to
treatment adherence.
The goal of the P-TRI is to help identify potential areas of risk prior to transplant surgery that may be related to potential
difficulties after surgery. Although there are no current data to support a predictive relationship between ratings on the P-TRI
and medical or psychosocial outcome, low scores on any of the items may suggest potential areas that warrant clinical
attention. Reliability and validity studies of the P-TRI are currently being conducted to help strengthen the clinical utility of
the P-TRI.
Assessment process
The interview questions for the P-TRI contain a list of relevant areas of inquiry that should be conducted during the rating
process. Information for each of these questions may be obtained by direct interview of the transplant candidate and his/her
family. Information may also be obtained from past medical records, or from assessments provided by members of the
transplant team, or other health care providers. All available sources of information should be reviewed to help provide the
most accurate assessment.
Scoring
After the clinical assessment, the rater should assign a numerical value between 1 and 4 for each item of the P-TRI, with low
values generally indicating areas of concern or risk. Low scores may prompt discussion of specific psychosocial risk factors
and suggest potential treatment interventions to reduce the severity of risk. In rare cases where the question is not applicable,
for example, items that are not applicable for very young children (Question2), the item should not be rated.
2. P-TRI interview questions
I. Illness factors
1. Have the patient and family had a full explanation about the transplant process?
2. Do the patient and family appear to understand the major medical and surgical issues related to transplant?
3. What is the general attitude of the patient and family towards the proposal for transplant?
4. What is the general motivation of the patient and family towards the proposal for transplant?
II. Treatment adherence
1. Is there a past history of poor adherence with medications, appointments, diet, lab tests, and other aspects of the
prescribed treatment?
2. Do the patient and family acknowledge and take responsibility for any past history of poor adherence to the treatment?
3. Is there a history of forgetting medications, poor supervision by the parents, refusing to take medications due to concerns
about medication side effects, or a tendency for the child to act out by not adhering to the medical treatment?
III. Psychiatric history
1. Do the patient or family members have a past or current history of psychiatric illness?
2. If there is current psychiatric illness, is the affected patient or family member currently participating in appropriate
psychiatric treatment?
3. If there is current psychiatric illness, how severe are the symptoms of this illness?
IV. Substance abuse history
1. Do the patient or family members have a past or current history of alcohol or substance abuse or dependence?
2. If there is current alcohol or substance abuse or dependence, is the affected patient or family member currently
participating in appropriate substance abuse treatment?
3. If there is current alcohol or substance abuse, how severe are the symptoms of abuse?
V. Family environment
1. Are there family members available to provide appropriate supervision of the patientÕs medical and medication treatment?
2. Are there family members willing to provide appropriate supervision that may be recommended by the transplant team?
3. Is there significant interpersonal conflict between family members?
4. Is the family able to communicate appropriately around parenting and supervision issues related to the patientÕs treatment?
5. Is the family willing to enter family therapy to address relevant family issues if recommended by the transplant team?
VI. Psychosocial support
1. Does the family have adequate financial resources to support the transplant process?
2. Are there extended family members or friends available to help provide logistical and emotional support to the family?
3. Does the patient have a satisfactory peer or social support network?
4. Does the patient participate in age appropriate social activities?
VII. Relationship with medical team
1. Is there a history of conflict or tension between the family and the transplant team?
2. Are there current feelings of anger or lack of trust between the family and the transplant team?

64
 Pediatric Transplant Rating Instrument

3. P-TRI Rating Form

Name: Date of Evaluation:

Rater:

I. ILLNESS FACTORS

1. Knowledge about Transplant:

1 2 3 4
Patient and family have Patient and family have received Patient and family have received Patient and family have received
received inadequate education adequate education about adequate education about adequate education about
about transplant. transplant. transplant. transplant.

Patient and family demonstrate Patient and family demonstrate Patient and family demonstrate Patient and family demonstrate
minimal understanding of poor understanding of transplant adequate understanding of comprehensive understanding of
transplant issues. issues. transplant issues. transplant issues.

2. Patient Motivation for Transplant:

1 2 3 4
Patient has negative motivation Patient has ambivalent Patient is generally motivated Patient is motivated for
for transplant. motivation for transplant. for transplant. transplant.

3. Parent/Family Motivation for Transplant:

1 2 3 4
Parent/Family has poor Parent/Family has ambivalent Parent/Family has generally Patient/Family has very positive
motivation for transplant. motivation for transplant. positive motivation for motivation for transplant.
transplant.

II. TREATMENT ADHERENCE

4. Adherence with Medications:

1 2 3 4
Past and current history of Past and current history of Past but not current history of No history of any difficulties
consistently poor medication consistently poor medication poor medication adherence. with medication adherence.
adherence. adherence.
Acknowledgment of adherence
No acknowledgment of Acknowledgment of adherence difficulties
adherence difficulties. difficulties.

5. Adherence with Medical Appointments (including lab tests):

1 2 3 4
Past and current history of Past and current history of Past but not current history of No history of any difficulties
consistently poor adherence to consistently poor adherence to poor adherence to medical with adherence with medical
medical appointments. medical appointments. appointments. appointments.

No acknowledgment of Acknowledgment of adherence Acknowledgment of adherence

adherence difficulties. difficulties. difficulties.

6. Presence of Risk Factors for Poor Adherence:

[Concern about side effects; forgetfulness; history of acting out]
1 2 3 4
Presence of MULTIPLE risk Past history of at least TWO risk Past history of ONE risk factor No history of any risk factors for
factors for poor adherence. factors for poor adherence. for poor adherence. poor adherence.

III. PSYCHIATRIC HISTORY

7. Patient Psychiatric History:

1 2 3 4
History of psychiatric illness. History of psychiatric illness. History of psychiatric illness. No current or past history of
psychiatric illness.
Current symptoms of illness. Current symptoms of illness. No current symptoms of illness.

No current psychiatric Patient in psychiatric treatment. Patient willing to enter treatment

treatment. if recommended.

8. Parental Psychiatric History:

1 2 3 4
History of psychiatric illness. History of psychiatric illness. History of psychiatric illness. No current or past history of
psychiatric illness.
Current symptoms of illness. Current symptoms of illness. No current symptoms of illness.

No current psychiatric Parent in psychiatric treatment. Parent willing to enter treatment

treatment. if recommended.

65
Fung and Shaw

IV. SUBSTANCE ABUSE HISTORY

9. Patient Substance Abuse History:

1 2 3 4
History of substance abuse. History of substance abuse. History of substance abuse. No current or past history of
substance abuse.
Current symptoms of substance Current symptoms of substance No current symptoms of
abuse. abuse. substance abuse.

No current substance abuse Patient in treatment for Patient willing to enter treatment
treatment. substance abuse. if recommended.

10. Parental Substance Abuse History:

1 2 3 4
History of substance abuse. History of substance abuse. History of substance abuse. No current or past history of
substance abuse.
Current symptoms of substance Current symptoms of substance No current symptoms of
abuse. abuse. substance abuse.

No current substance abuse Parent in treatment for substance Parent willing to enter treatment
treatment. abuse. if recommended.

V. FAMILY ENVIRONMENT

11. Parental Supervision:

1 2 3 4
No availability of family No availability of family Limited availability of family Availability and willingness of
members to supervise members to supervise treatment. members to supervise treatment. family members to supervise
treatment. treatment.
Willingness of family members Willingness of family members
No willingness of family to supervise treatment. to supervise treatment.
members to supervise
treatment.

12. Presence of Family Conflict:

1 2 3 4
Presence of significant conflict Presence of significant conflict Presence of minor conflict No evidence of presence of
between family members. between family members. between family members. conflict between family
members.
No willingness of family to Willingness of family to engage Willingness of family to engage
engage in family treatment. in family treatment. in family treatment if
recommended.

13. Communication Style:

1 2 3 4
Poor ability of family members Poor ability of family members Presence of minor difficulties No evidence of difficulties
to communicate around to communicate around regarding family ability to regarding family ability to
treatment issues. treatment issues. communicate around treatment communicate around treatment
issues. issues.
No willingness of family to Willingness of family to engage
engage in family treatment. in family treatment. Willingness of family to engage
in family treatment if
recommended.

VI. FINANCIAL, LOGISTICAL AND PSYCHOSOCIAL SUPPORT

14. Financial and Health Insurance Resources:

1 2 3 4
Inadequate financial and health Very limited financial and health Limited financial and health Adequate financial and health
insurance resources to support insurance resources to support insurance resources to support insurance resources to support
mental health and logistical mental health and logistical mental health and logistical mental health and logistical
needs. needs. needs. needs.

15. Presence of Support from Extended Family Members:

1 2 3 4
No support from extended Very limited support from Limited support from extended Adequate support from extended
family members. extended family members. family members. family members.

16. Presence of Support from Friends and Peer Relationships:

1 2 3 4
No support from friends and Very limited support from Limited support from friends Adequate support from friends
peer relationships. friends and peer relationships. and peer relationships. and peer relationships.

VII. RELATIONSHIP WITH MEDICAL TEAM

17. Relationship with Medical Team:

1 2 3 4
Past history of significant Past history of significant Past history of mild conflict with Adequate and trusting
conflict with medical team. conflict with medical team. medical team. relationship with medical team.

Current lack of trust and/or Current trusting relationship Current trusting relationship
anger with medical team. with medical team. with medical team.

© Ernest Fung, California School of Professional Psychology/Alliant International University; Richard Shaw,
Stanford University. Reprinted with permission.

66