Ahna L. H. Pai

Conducting a Randomized Clinical Trial of an Psychological Intervention for Parents/Caregivers of Children with Cancer Shortly after Diagnosis

OBJECTIVE To report acceptability, feasibility, and outcome data from a randomized clinical trial (RCT) of a brief intervention for caregivers of children newly diagnosed with cancer. METHOD Eighty-one families were randomly assigned following collection of baseline data to Intervention or Treatment as Usual (TAU). Recruitment and retention rates and progression through the protocol were tracked. Measures of state anxiety and posttraumatic stress symptoms served as outcomes. RESULTS Difficulties enrolling participants included a high percentage of newly diagnosed families failing to meet inclusion criteria (40%) and an unexpectedly low participation rate (23%). However, movement through the protocol was generally completed in a timely manner and those completing the intervention provided positive feedback. Outcome data showed no significant differences between the arms of the RCT. CONCLUSIONS There are many challenges inherent in conducting a RCT shortly after cancer diagnosis. Consideration of alternative research designs and optimal timing for interventions are essential next steps.

The Allocation of Treatment Responsibility scale: a novel tool for assessing patient and caregiver management of pediatric medical treatment regimens.

Pai ALH, Gray E, Kurivial K, Ross J, Schoborg D, Goebel J. The Allocation of Treatment Responsibility scale: A novel tool for assessing patient and caregiver management of pediatric medical treatment regimens.
Pediatr Transplantation 2010: 14:993–999.

Psychosocial Assessment Tool 2.0_General: Validity of a psychosocial risk screener in a pediatric kidney transplant sample

Pai ALH, Tackett A, Ittenbach RF, Goebel J. Psychosocial Assessment Tool 2.0_General: Validity of a psychosocial risk screener in a pediatric kidney transplant sample. 
Pediatr Transplantation 2012: 16: 92–98.

Pediatric medical traumatic stress in pediatric oncology : family systems interventions

Purpose of review Traumatic stress offers a helpful framework by which the ongoing reactions of children with cancer and their families can be understood. Family systems interventions in pediatric oncology are reviewed, with a focus on reducing pediatric medical traumatic stress (PMTS) across members of the family. Recent findings A recently developed model of PMTS is presented and applied to the pediatric cancer population. Two family interventions to decrease traumatic stress systems are reviewed. Reductions in traumatic stress symptoms were observed at postintervention follow-ups for family members in both studies. Summary The pediatric medical traumatic stress model provides a useful heuristic for understanding the psychological consequences of pediatric cancer on the child and their family over the course of treatment and beyond. Two family systems interventions show promise in improving outcomes for childhood cancer survivors and their parents. Although interventions are promising, future development of these interventions to modify them for dissemination is needed.

System for integrated adherence monitoring: Real‐time non‐adherence risk assessment in pediatric kidney transplantation

Pai ALH, Rausch J, Tackett A, Marsolo K, Drotar D, Goebel J. System for integrated adherence monitoring: Real‐time non‐adherence risk assessment in pediatric kidney transplantation.

Adherence to outpatient oral medication regimens in adolescent hematopoietic stem cell transplant recipients

PURPOSE Hematopoietic stem cell transplantation (HSCT) is an increasingly utilized treatment option for adolescents with many life-threatening diagnoses. Suboptimal adherence may result in compromised treatment effectiveness and increased risk of adverse medical outcomes. METHOD This study examined adherence patterns in six adolescents (ages 12-18) who had undergone HSCT. Demographic and clinical information were obtained from caregivers and via chart review. Electronic pill bottles (Medical Event Monitors, MEMS™) were used to track medication adherence. Daily, weekly, and monthly adherence as well as medication interruptions (periods of ≥ 24 h between doses) were calculated. RESULTS Participants took 73% of doses (SD = 13%) and demonstrated perfect adherence on 56% of days (SD = 18%, Range = 34-88%). Average monthly adherence ranged from 40 to 91% and decreased over time. Participants demonstrated at least two [M(SD) = 4.20(2.28)] medication interruptions. Individual adherence patterns included high sustained adherence, variable adherence, and delayed non-adherence. CONCLUSIONS Overall, participants struggled to adhere to medication schedules, taking less than three-quarters of prescribed doses and demonstrating perfect adherence on fewer than four out of seven days per week. Adherence rates are similar to those observed in other pediatric populations and demonstrate the importance of routinely assessing adherence in adolescents who have undergone HSCT.

Preparing for transition? The allocation of oral medication regimen tasks in adolescents with renal transplants

Pai ALH, Ingerski LM, Perazzo L, Ramey C, Bonner M, Goebel J. Preparing for transition? The allocation of oral medication regimen tasks in adolescents with renal transplants.
Pediatr Transplantation 2011: 15:9–16.

The impact of effective paediatric adherence promotion interventions: systematic review and meta-analysis.

BACKGROUND Understanding the impact of effective paediatric adherence promotion interventions on patients, families and the healthcare system is necessary to inform efforts to improve healthcare quality and control costs. Building on previous research suggesting that improving adherence may have far-reaching benefits, the objective of this study was to quantify the impact of effective adherence promotion interventions for children and adolescents with a chronic medical condition on patients, families and the healthcare system. METHODS Authors systematically reviewed articles indexed in PubMed, PsycINFO and CINAHL to identify randomized controlled trials of paediatric adherence promotion interventions. Interventions that improved paediatric adherence and examined patient-level, family-level or healthcare system-level outcomes in children and adolescents (M age ≤ 18 years) with a chronic medical condition were included. Two authors independently extracted and classified outcome variables as patient-level (quality of life and disease-related activity restrictions), micro-level (family functioning, family conflict, caregiver quality of life, caregiver sleep interruption, caregiver days away from work and patient missed school days) or macro-level variables (emergency department visits, hospitalizations, outpatient visits and urgent care visits). Outcome variables detailed in previously published reviews (i.e. disease severity) were excluded. RESULTS Twenty studies representing 19 unique samples met inclusion criteria. An additional eight articles representing trials that did not significantly improve adherence were included in post hoc analyses. Compared with control interventions, effective paediatric adherence promotion interventions improved patient quality of life and family-level outcomes and decreased healthcare utilization among children and adolescents with a chronic medical condition. CONCLUSIONS Interdisciplinary efforts to improve healthcare quality and reduce spending among children and adolescents with a chronic medical condition may be enhanced by incorporating effective paediatric adherence promotion interventions. As relatively few chronic medical conditions were represented in included studies, future research should examine the impact of paediatric adherence promotion interventions in other populations.

Cultural Influences in Pediatric Cancer From Diagnosis to Cure/End of Life

Objective: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer. Methods: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organized around several clinically driven themes. Results: Cultural factors influenced many aspects of the cancer experience including illness representations, reaction to diagnosis, illness disclosure patterns, complementary and alternative medicine use, management of medical procedures, coping strategies, and end of life issues. Conclusion: Increased awareness of cultural factors is needed to improve clinical care and reduce health disparities. Specific strategies to approach cultural differences are provided to enhance patient and family care from diagnosis to cure/end of life.

Efficacy and flexibility impact perceived adherence barriers in pediatric kidney post-transplantation.

The alarming rates of medication nonadherence and its detrimental effect on long-term graft survival in pediatric kidney transplantation has called attention to identifying modifiable factors that promote better adherence and subsequent transplant outcomes. In a sample of 45 adolescent kidney transplant recipients (14.7 ± 3.3 years, 77.8% Caucasian, 39.5% female) and their primary caregivers, study aims included: 1) identifying sociodemographic and medical correlates of both caregiver- and patient-reported general family functioning (i.e., efficacy, flexibility, and communication) and 2) determining the unique contributions of these family functioning indices to perceived posttransplant adherence barriers. During a routine clinic visit, caregivers completed a sociodemographic form and questionnaire on general family functioning. Both caregivers and the adolescents completed a measure on perceived medication adherence barriers. Data identified household income and family structure as persistent correlates of family functioning. Familial efficacy and flexibility contributed significant variance to perceived adherence barriers. Family-based interventions enhancing modifiable family factors, such as flexibility and efficacy, in overcoming medication adherence barriers would likely promote more optimal health outcomes in the pediatric kidney transplant population.