Laura Mee

Parent and patient perspectives on barriers to medication adherence in adolescent transplant recipients.

Abstract:  The aim of this study was to identify barriers to medication adherence in adolescent transplant recipients. Eighty adolescent transplant recipient families reported in an open‐ended manner about barriers to medication adherence. These responses were then coded to reflect potentially important themes associated with medication adherence. The themes derived included: forgot/distracted, poor planning/scheduling issues, physical barriers/medication issues, and voluntary resistance/attempts to be normal. Inter‐rater reliability for barrier coding was very high (k = 0.91). Patients who were classified as non‐adherent reported significantly more overall barriers, more forgot/distracted barriers, and more voluntary resistance/attempts to be normal barriers than those classified as adherent. Non‐adherence was also found to be more likely when adolescents, as opposed to parents, were responsible for administering the medication. Further, non‐adherence was more likely when taking morning rather than evening doses. These findings are explained with an emphasis on potential remedies that directly address the stated barriers.

Pre-bereavement meaning and post-bereavement distress in mothers of children who underwent haematopoietic stem cell transplantation

OBJECTIVES The purpose of this study was to explore the association of meaning-making with psychological adjustment to bereavement among mothers of children who had undergone haematopoietic stem cell transplantation (HSCT). DESIGN A prospective research design was used. Regression analyses were conducted to determine the relations between pre-bereavement variables (distress, searching for meaning, and finding meaning) and distress post-bereavement. METHODS Thirty-five mothers of children who had undergone HSCT were interviewed at the time of their childs HSCT and 3 months post-bereavement. RESULTS Mothers who reported searching for meaning at HSCT reported greater post-bereavement distress, and mothers who reported finding meaning at HSCT reported less post-bereavement distress. Distress at HSCT and the number of days between the time of death and the post-bereavement time point were also found to be significant predictors of post-bereavement distress. CONCLUSIONS This study provides partial support for the role of meaning in adjustment to loss.

Multidimensional Adherence Classification System: Initial development with adolescent transplant recipients

Abstract:  As transplantation has progressively become a more viable option for children with life‐threatening illness, ensuring that adolescents do not lose their new organ secondary to medication non‐adherence is paramount. The first step to addressing non‐adherence is adequate assessment of this construct. In this investigation, we introduce the MACS. The MACS includes self‐report and drug assay levels. Self‐report is a subjective measure with a low false‐positive rate, but is vulnerable to social desirability. Drug assays are an objective measure of drug ingestion, but values suggestive of non‐adherence may be influenced by medical complications and timing. The MACS builds on the strengths of both methods and attempts to contain their weaknesses. The sample in this study consisted of 82 adolescent solid organ transplant recipients. The non‐adherence rate using the MACS in this sample was 61%. Initial data to support this system are promising. The occurrence of rejection episodes and mortality were significantly related to membership in the Genuinely Non‐adherent category. Beyond providing initial support for the MACS, we discuss the clinical implications of this adherence classification system.

Emotional Functioning, Barriers, and Medication Adherence in Pediatric Transplant Recipients

OBJECTIVE This study assessed relationships among internalizing symptoms, barriers to medication adherence, and medication adherence in adolescents with solid organ transplants. METHOD The sample included 72 adolescents who had received solid organ transplants. Multiple mediator models were tested via bootstrapping methods. RESULTS Bivariate correlations revealed significant relationships between barriers and internalizing symptoms of depression, anxiety, and posttraumatic stress, as well as between internalizing symptoms and medication adherence. Barriers indicative of adaptation to the medication regimen (e.g., forgetting, lack of organization) were related to medication adherence and mediated the relationship between internalizing symptoms and medication adherence. CONCLUSIONS These findings indicate that barriers may serve as a more specific factor in the relationship between more general, pervasive internalizing symptoms and medication adherence. Results may help guide areas for clinical assessment, and the focus of interventions for adolescent transplant recipients who are experiencing internalizing symptoms and/or who are nonadherent to their medication regimen.

Prospective comparison of parent and adolescent report of health-related quality of life in adolescent solid organ transplant recipients

Devine KA, Reed‐Knight B, Simons LE, Mee LL, Blount RL. Prospective comparison of parent and adolescent report of health‐related quality of life in adolescent solid organ transplant recipients.
Pediatr Transplantation 2010: 14:1000–1006.

Perceived partner critical and avoidant behaviors as predictors of anxious and depressive symptoms among mothers of children undergoing hemopaietic stem cell transplantation

This prospective study examined the role of perceived partner criticism and avoidance in the anxiety and depressive symptoms of 148 mothers of children undergoing hemopaietic stem cell transplantation (HSCT). The roles of indicators of transplantation risk and posttransplantation medical course were also examined. Perceived partner criticism (e.g., criticizing coping efforts) and perceived partner avoidance (e.g., changing the topic), objective indicators of transplantation risk, and anxiety and depressive symptoms were assessed at the time of HSCT and again 3 and 6 months later. Growth curve modeling analyses indicated that perceived partner criticism was associated with higher average depressive symptoms. However, perceived partner criticism did not predict changes in mothers anxiety. Contrary to predictions, perceived partner avoidance was associated with decreases in maternal anxiety.

Cognitive and Behavioral Correlates of Childhood Depression

Cognitive—behavioral models have received widespread attention pertaining to the etiology, symptom display, and treatment of depressed children and adolescents. This chapter addresses the myriad cognitive—behavioral perspectives relevant to depression in youth. This work is integrated with principles from developmental psychology. A developmental perspective for conceptualizing the cognitive and behavioral functioning of children necessitates understanding children as organisms who are different from adults rather than deficient relative to adults, and viewing children’s behavior in the context in which it is embedded. The incorporation of notions from developmental psychology within a cognitive—behavioral framework enhances our understanding of the development of competencies and deficits as manifested in depressed youth of different ages.

The health education for lupus study: a randomized controlled cognitive-behavioral intervention targeting psychosocial adjustment and quality of life in adolescent females with systemic lupus erythematosus.

Introduction:To examine in a randomize controlled feasibility clinical trial the efficacy of a cognitive-behavioral intervention designed to manage pain, enhance disease adjustment and adaptation and improve quality of life among female adolescents with systemic lupus erythematosus. Methods:Female adolescents (n = 53) ranging in age from 12 to 18 years were randomly assigned to 1 of 3 groups including a cognitive-behavioral intervention, an education-only arm and a no-contact control group. Participants were assessed at baseline, postintervention and at 3- and 6-month intervals after completion of the intervention. Results:No significant differences were revealed among the 3 treatment arms for any of the dependent measures at any of the assessment points. For the mediator variables, a posthoc secondary analysis did reveal increases in coping skills from baseline to postintervention among the participants in the cognitive-behavioral intervention group compared with both the no-contact control group and the education-only group. Conclusion:Although no differences were detected in the primary outcome, a possible effect on coping of female adolescents with systemic lupus erythematosus was detected in this feasibility study. Whether the impact of training in the area of coping was of sufficient magnitude to generalize to other areas of functioning, such as adjustment and adaptation, is unclear. Future phase III randomized trials will be needed to assess additional coping models and to evaluate the dose of training and its influence on pain management, adjustment and health-related quality of life.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence.  METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures.  RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence.  CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.

The Relationship Between Adolescent Renal Transplant Recipients’ Perceived Adversity, Coping, and Medical Adherence

The aim of the present study was to assess adolescent renal transplant recipients’ perceived adversity (PA) for various aspects of living with a transplant, including its association with coping and medication non-adherence, from a theoretical perspective. Thirty-three adolescent renal transplant recipients were interviewed using structured questionnaires and medical record reviews. Health care provider ratings of adversity were also collected. Participants reported moderate levels of PA, with those who received a transplant at an older age reporting more adversity on several domains and girls reporting more adversity for missing school. Ratings of adversity for specific aspects of living with a transplant differed depending on age and medical factors and were related to specific coping strategies and measures of non-adherence. Consistent with the Self-Regulation Model, perceived consequences (represented as PA) appears to be related to coping and illness outcomes. Assessing PA and teaching appropriate coping strategies may yield better medical outcomes among this at-risk population.