Lisa A. Schwartz

Cystic fibrosis and transition to adult medical care.

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.

Posttrauamatic stress disorder (PTSD) in young adult survivors of childhood cancer

Posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD) were assessed in young adult survivors of childhood cancer, including the role of four sets of variables in understanding PTSD in this population: demographic characteristics, disease and treatment factors, psychosocial and functional outcomes, and cancer‐related beliefs.

Quality of life of adolescents with cancer: family risks and resources

PurposeThe goal of this study was to evaluate the relative contribution of treatment intensity, family sociodemographic risk, and family resources to health-related quality of life (QOL) of 102 adolescents in treatment for cancer.MethodsAdolescents and parents completed self-report measures of teen QOL, family functioning, and parent-child bonding. Based on parent report of family sociodemographic variables, an additive risk index was computed. A pediatric oncologist rated treatment intensity.ResultsSimultaneous regression analyses demonstrated the significant contribution of roles in family functioning and quality of parent-child relationship to prediction of psychosocial QOL (parent and teen-reported) as well as parent-reported teen physical QOL over and above the contribution of treatment intensity. Family sociodemographic risk did not contribute to QOL in these regression analyses. In additional analyses, specific diagnosis, types of treatment and individual sociodemographic risk variables were not associated with QOL. Parent and teen ratings of family functioning and quality of life were concordant.ConclusionsFamily functioning, including quality of parent-child relationship, are central and potentially modifiable resistance factors in teen QOL while under treatment for cancer. Even more important than relying on diagnosis or treatment, screening for roles and relationships early in treatment may be an important aspect of determining risk for poor QOL outcomes.

A family-based randomized controlled trial of pain intervention for adolescents with sickle cell disease.

The study had 2 aims---to determine the efficacy of a family-based cognitive-behavioral pain management intervention for adolescents with sickle cell disease (SCD) in (1) reducing pain and improving health-related variables and (2) improving psychosocial outcomes. Each adolescent and a family support person were randomly assigned to receive a brief pain intervention (PAIN) (n=27) or a disease education attention control intervention (DISEASE ED) (n=26) delivered at home. Assessment of primary pain and health-related variables (health service use, pain coping, pain-related hindrance of goals) and secondary psychosocial outcomes (disease knowledge, disease self-efficacy, and family communication) occurred at baseline (before randomization), postintervention, and 1-year follow-up. Change on outcomes did not differ significantly by group at either time point. When groups were combined in exploratory analyses, there was evidence of small to medium effects of intervention on health-related and psychosocial variables. Efforts to address barriers to participation and improve feasibility of psychosocial interventions for pediatric SCD are critical to advancing development of effective treatments for pain. Sample size was insufficient to adequately test efficacy, and analyses did not support this focused cognitive-behavioral pain management intervention in this sample of adolescents with SCD. Exploratory analyses suggest that comprehensive interventions, that address a broad range of skills related to disease management and adolescent health concerns, may be more effective in supporting teens during healthcare transition.

Negative thinking as a coping strategy mediator of pain and internalizing symptoms in adolescents with sickle cell disease.

The objective of this study was to examine the role of coping strategies, specifically negative thinking, in mediating the association of pain with symptoms of anxiety and depression in adolescents with sickle cell disease. Fifty-two 12–18-year-old adolescents with sickle cell disease completed a daily pain diary and paper-and-pencil measures of pain, pain coping, depression and anxiety. Symptoms of depression and anxiety were within the non-clinical range. Preliminary analyses indicated that lower family income was associated with higher reports of pain and negative thinking. Mediation regression analyses supported negative thinking as mediating the association of: (1) pain intensity with depression, and (2) pain interference with daily activities with anxiety. Findings highlight negative thinking as a factor compromising adolescents’ adaptation to sickle cell pain; however, further investigation is required to determine the mediating influence of pain coping. Associations for lower income emphasize the multiple risk factors experienced by many of these adolescents.

Factors associated with parental activation in pediatric hematopoietic stem cell transplant

Patient activation, the extension of self-efficacy into self-management, is an essential component of effective chronic care. In pediatric populations, caregiver activation is also needed for proper disease management. This study investigates the relationships between parental activation and other characteristics of parent–child dyads (N = 198) presenting for pediatric hematopoietic stem cell transplant. Parental activation concerning their child’s health was assessed using the Parent Patient Activation Measure (Parent-PAM), a modified version of the well-validated Patient Activation Measure (PAM). Using hierarchical linear regression and following the Belsky process model for determining parenting behaviors, a multivariate model was created for parental activation on behalf of their child that showed that the parent’s age, rating of their own general health, self-activation, and duration of the child’s illness were significantly related to Parent-PAM score. Our findings characterize a potentially distinct form of activation in a parent–child cohort preparing for a demanding clinical course.

Associates of School Absenteeism in Adolescents With Sickle Cell Disease

Despite high rates of school absenteeism in adolescents with sickle cell disease (SCD), the issue remains understudied. Potential associates of school absenteeism in adolescents with SCD include demographic (age, income), psychosocial (IQ, self‐efficacy, competence, internalizing symptoms, negative thinking), and health‐related (hemoglobin, health‐care utilization, pain, disease knowledge).

Defining the Nature and Impact of Goals in Children and Adolescents with a Chronic Health Condition: A Review of Research and a Theoretical Framework

This paper presents a review of research related to goals in youth with a chronic health condition (CHC) and a related framework to inform theory and research. Performed literature review using PsychINFO and Medline with a combination of many key words related to health, goals, and youth. Sixteen studies related to goals in youth with a CHC were identified. An integrative framework to inform research on goals in pediatric CHCs was presented based on studies reviewed. The impact of a CHC on goals and related behaviors, impact of goal conflict and collaboration, interventions with goal-setting components, and impact of developmental, disease, socioeconomic, and cultural factors were described. Recommendations for future research were discussed. The application of theory related to the nature and impact of goals in youth with a CHC will advance the field from a research and clinical standpoint.

Physical Symptoms, Perceived Social Support, and Affect in Adolescents with Cancer

Treatment for cancer among adolescents is often more intense and lasts longer than treatment for older or younger patients. It typically causes pain, fatigue, and nausea and affects social and emotional well-being. This study examined the relationships among demographics, physical symptoms, perceived social support from friends and family, and affect (positive and negative) in 102 adolescents (age 13–19) with cancer using correlational analyses. Additionally, perceived social support was explored as a mediator and moderator of the relationship between physical symptoms and affect using regression. Females reported significantly lower friend support and higher negative affect compared to males. Minority participants were more likely to endorse physical symptoms and less negative affect compared to White respondents. Higher report of physical symptoms was significantly related to greater negative affect, whereas higher perceived social support from friends was related to higher positive affect. Adolescents consistently reported high levels of social support from family and friends. Additionally, adolescents tended to report average levels of positive affect and low levels of negative affect compared to healthy populations. No significant mediation or moderation effects were found. This research highlights that females and minorities, and those with greater physical symptoms, may be more vulnerable to poor adjustment to cancer during adolescence. However, overall this study lends support to the notion that adolescents with cancer are an especially resilient population, as these patients endorsed generally high levels of social support and positive affect, with low levels of negative affect.

Self-Reported Health Problems of Young Adults in Clinical Settings: Survivors of Childhood Cancer and Healthy Controls

Purpose: Increasing numbers of childhood cancer survivors are being seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study. Methods: 156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age, 20 years) completed the Health Knowledge Inventory, a checklist of 35 health problems. Results: Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems; P < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female sex related to report of Organic/Major problems and Constitutional/Other problems for the controls. Although at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal, and weight problems, survivors endorsed growth, thyroid, kidney, immunologic, heart, and fertility problems 4-fold over controls. Conclusions: Cancer survivors endorse significantly more health problems than do healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young-adult cancer survivors.