Predictors of health-related quality of life over time among adolescents and young adults with sickle cell disease.

Little is known about what factors affect the health-related quality of life (HRQoL) of adolescents and young adults (AYAs) with sickle cell disease (SCD), and how their HRQoL changes over time. This retrospective study included 87 AYAs attending a SCD Adolescent Clinic who completed a measure of HRQoL at each visit over the course of approximately 1.3 years. Results suggested that the following were associated with poorer physical HRQoL: being female, more healthcare utilization events, and presence of internalizing symptoms. Internalizing and externalizing symptoms were the only factors correlated with poorer psychosocial HRQoL. Generalized linear mixed models indicated that physical and psychosocial HRQoL improved among all participants during the assessment period, and those with externalizing behaviors reported faster improvement in physical HRQoL over time. AYAs with SCD may benefit from early mental health screening and intervention to optimize clinical care.

A Narrative Review of Depression and Suicide in Adolescent Females to Guide Assessment and Treatment Recommendations.

STUDY OBJECTIVE: Suicide is a leading cause of death for adolescents. Medical professionals are increasingly being asked to screen for depressive symptoms and suicidal ideation with little training. The purpose of this paper is to review factors related to suicidal thoughts and actions, assessment of symptoms, and initial suggestions for treatment for medical providers. METHODS: A literature review of risk and resilience factors, assessment measures, and treatment options for depression and suicidal ideation and behavior in adolescent females was conducted. RESULTS: Given the higher risk of suicidal thoughts and depressive symptoms in adolescent females, accurate and thorough assessment of symptoms is recommended. CONCLUSION: Medical providers should be aware of symptoms related to depression and suicidal ideation in order to provide more effective assessments. Recommendations for brief assessment measures that can be used in the clinic and possible first line treatments are provided.

Perceived barriers to clinic appointments for adolescents with sickle cell disease.

PURPOSE: The purpose of this study was to examine perceived barriers to clinic attendance and strategies to overcome these barriers for adolescents with sickle cell disease. MATERIALS AND METHODS: This was a 2-phased study, which used focus groups (n=13) and individual semistructured interviews (n=32) with adolescent patients (aged 13 to 21 y) from 3 pediatric sickle cell clinics in the Midwest. RESULTS: Adolescents identified competing activities, health status, patient-provider relationships, adverse clinic experiences, and forgetting as barriers to clinic attendance. Calendars/reminders and parent reminders were the most commonly reported strategies to facilitate clinic attendance. Adolescents also reported the need for flexible scheduling and improved patient-provider communication. DISCUSSION: Adolescents with sickle cell disease and their families may benefit from ongoing education about the importance of attending routine clinic visits. Adherence to clinic appointments for adolescents may be enhanced by developing interventions to decrease forgetting (eg, phone call reminders or text messaging) and increase patient satisfaction with clinic visits. Scheduling appointments to accommodate busy schedules/scheduling conflicts (eg, late clinic hours), providing teen-friendly clinic environments, and using technology may also facilitate attendance.

A randomized controlled trial of massage therapy in children with sickle cell disease.

OBJECTIVE: This randomized controlled trial investigated the short-term effects of massage therapy on youth with SCD and their parents. METHODS: Thirty-four children and adolescents, and their parents were assigned to a massage therapy or an attention control group. Parents were trained in massage in their homes once a week for 4 weeks, with instructions to provide nightly massages. Families in the control group were visited weekly by a research assistant. Participants completed measures of depression and anxiety, functional status, pain intensity, medication use, and service utilization. RESULTS: Parents in the massage therapy group reported higher levels of depression and anxiety following the intervention. Youth in this group showed higher levels of functional status, and lower levels of depression, anxiety, and pain. Health service utilization rates were unchanged from pre- to post-intervention. CONCLUSIONS: These results offer preliminary support for parent-delivered massage therapy as an intervention for SCD pain.

Evidence-based assessment of adherence to medical treatments in pediatric psychology.

OBJECTIVES: Adherence to medical regimens for children and adolescents with chronic conditions is generally below 50% and is considered the single, greatest cause of treatment failure. As the prevalence of chronic illnesses in pediatric populations increases and awareness of the negative consequences of poor adherence become clearer, the need for reliable and valid measures of adherence has grown. METHODS: This review evaluated empirical evidence for 18 measures utilizing three assessment methods: (a) self-report or structured interviews, (b) daily diary methods, and (c) electronic monitors. RESULTS: Ten measures met the "well-established" evidence-based (EBA) criteria. CONCLUSIONS: Several recommendations for improving adherence assessment were made. In particular, consideration should be given to the use of innovative technologies that provide a window into the "real time" behaviors of patients and families. Providing written treatment plans, identifying barriers to good adherence, and examining racial and ethnic differences in attitudes, beliefs and behaviors affecting adherence were strongly recommended.

Evidence-based assessment of pediatric pain.

OBJECTIVE: To conduct an evidence-based review of pediatric pain measures. METHODS: Seventeen measures were examined, spanning pain intensity self-report, questionnaires and diaries, and behavioral observations. Measures were classified as "Well-established," "Approaching well-established," or "Promising" according to established criteria. Information was highlighted to help professionals evaluate the instruments for particular purposes (e.g., research, clinical work). RESULTS: Eleven measures met criteria for "Well-established," six "Approaching well-established," and zero were classified as "Promising." CONCLUSIONS: There are a number of strong measures for assessing children's pain, which allows professionals options to meet their particular needs. Future directions in pain assessment are identified, such as highlighting culture and the impact of pain on functioning. This review examines the research and characteristics of some of the commonly used pain tools in hopes that the reader will be able to use this evidence-based approach and the information in future selection of assessment devices for pediatric pain.

Caregivers' knowledge and acceptance of complementary and alternative medicine in a tertiary care pediatric hospital.

BACKGROUND: The use of complementary and alternative medicine (CAM) therapies has increased in children, especially in those with chronic health conditions. However, this increase may not translate into acceptance of CAM in the perioperative setting. We surveyed caregivers of patients undergoing surgery to determine their knowledge and acceptance of hypnotherapy, acupuncture, and music therapy as alternatives to standard medication in the perioperative period. MATERIALS AND METHODS: An anonymous, 12-question survey was administered to caregivers of children undergoing procedures under general anesthesia. Caregivers reported their knowledge about hypnotherapy, music therapy, and acupuncture and interest in one of these methods during the perioperative period. CAM acceptance was defined as interest in one or more CAM methods. RESULTS: Data from 164 caregivers were analyzed. The majority of caregivers were 20-40 years of age (68%) and mothers of the patient (82%). Caregivers were most familiar with acupuncture (70%), followed by music therapy (60%) and hypnotherapy (38%). Overall CAM acceptance was 51%. The acceptance of specific CAM modalities was highest for music therapy (50%), followed by hypnotherapy (17%) and acupuncture (13%). In multivariable logistic regression, familiarity with music therapy was associated with greater odds of CAM acceptance (odds ratio=3.36; 95% CI: 1.46, 7.74; P=0.004). CONCLUSION: Overall CAM acceptance among caregivers of children undergoing surgery was 51%, with music therapy being the most accepted CAM method. Familiarity with music therapy was the only factor that was independently associated with accepting CAM in the perioperative period. The low acceptance for acupuncture and hypnosis in the perioperative situation may be related to insufficient parental knowledge and information.

Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease.

Pediatric sickle cell disease is a chronic illness for which recurrent pain is a ubiquitous experience. This study used quantitative and qualitative methods to examine relationships between patient and family coping and health care utilization in children with sickle cell disease and to assess parents' recommendations for ensuring patient and family-centered care. Participants were 53 parents of children aged 7 to 13 with sickle cell disease across three large urban children's hospitals. Data showed that positive patient coping was related to positive family functioning and lower health utilization. In addition, parents report the need for comprehensive health care approaches that meet the physical and psychologic needs of patients and families.

Behavioral and nutritional treatment for preschool-aged children with cystic fibrosis: a randomized clinical trial.

IMPORTANCE: Evidence-based treatments that achieve optimal energy intake and improve growth in preschool-aged children with cystic fibrosis (CF) are a critical need. OBJECTIVE: To test whether behavioral and nutritional treatment (intervention) was superior to an education and attention control treatment in increasing energy intake, weight z (WAZ) score, and height z (HAZ) score. DESIGN, SETTING, AND PARTICIPANTS: This randomized clinical trial included 78 children aged 2 to 6 years (mean age, 3.8 years) with CF and pancreatic insufficiency (intervention, n = 36 and control, n = 42). The study was conducted at 7 CF centers between January 2006 and November 2012; all 78 participants who met intent-to-treat criteria completed through follow-up. INTERVENTIONS: Behavioral intervention combined individualized nutritional counseling targeting increased energy intake and training in behavioral child management skills. The control arm provided education and served as a behavioral placebo controlling for attention and contact frequency. Both treatments were delivered in person or telehealth (via telephone). Sessions occurred weekly for 8 weeks then monthly for 4 months (6 months). Participants then returned to standard care for 1 year, with 12-month follow-up thereafter. MAIN OUTCOMES AND MEASURES: Changes in energy intake and WAZ score were examined from pretreatment to posttreatment (6 months) and change in HAZ score was assessed pretreatment to follow-up (18 months). Covariates included sex, Pseudomonas aeruginosa status at baseline, and treatment modality (in person vs telehealth). RESULTS: At baseline, mean (SD) energy intake was 1462 (329) kcals/d, WAZ score was -0.44 (0.81), and HAZ score was -0.55 (0.84). From pretreatment to posttreatment, the intervention increased daily energy intake by 485 calories vs 58 calories for the control group (adjusted difference, 431 calories; 95% CI, 282 to 581; P < .001) and increased the WAZ score by 0.12 units vs 0.06 for the control (adjusted difference, 0.09; 95% CI, -0.06 to 0.24; P = .25). From pretreatment to follow-up, the intervention increased the HAZ score by 0.09 units vs -0.02 for the control (adjusted difference, 0.14 units; 95% CI, 0.001 to 0.27; P = .049). Measured treatment integrity and credibility were high for both groups. CONCLUSIONS AND RELEVANCE: Behavioral and nutritional intervention improved energy intake and HAZ score outcomes but not WAZ score outcomes. Our results provide evidence that behavioral and nutritional treatment may be efficacious as a nutritional intervention for preschoolers aged 2 to 6 years with CF and pancreatic insufficiency. TRIAL REGISTRATION: clinicaltrials.gov Identifier:NCT00241969.

Functional outcome at adolescence for infants less than 801 g birth weight: perceptions of children and parents.

OBJECTIVE: To compare functional, emotional, and academic status of adolescents who had been extremely low birth weight (ELBW) with those who were full term. STUDY DESIGN: Twenty-six adolescents who were born in 1983 to 1984 at less than 801 g birth weight were compared with 26 adolescents born at term. Adolescent-perceived status was assessed using the Behavior Assessment System for Children (BASC-SR) and the Self-Perception Profile. Parents' perceptions were assessed using BASC Parent Report, Family Impact Questionnaire, and Functional Status Measure. Health status was obtained through written requests to primary care providers and parent interviews. Academic and attendance information was obtained through school records. RESULTS: Compared to the term adolescents, the ELBW group had significantly lower function related to health status, increased need for special education, and tended to score lower on academic performance measures. However, ELBW adolescents' perceptions regarding their scholastic, athletic, or social competencies did not differ from the term group or national normative data. Parents of ELBWs reported lower adaptive skills, but no other behavioral differences from the term group. CONCLUSION: ELBW survivors and their parents perceived outcome at adolescence positively in spite of evident limitations. Mechanisms that ELBW families use to cope may be important determinants for successful, long-term outcome.

Dysfunctional eating patterns and symptoms of pica in children and adolescents with sickle cell disease.

The objective of this study was to examine the incidence and relationship of pica symptoms and dysfunctional eating patterns in children and adolescents with sickle cell disease (SCD). Children and caregivers (n = 146) completed questionnaires assessing eating difficulties and symptoms of pica. Information also was collected from medical records and analyzed for relationships with dysfunctional eating patterns. Incidence of problems and their association with disease parameters of SCD were examined. Dysfunctional eating patterns were found in those with no symptoms of pica and those with severe symptoms of pica. Caregiver-reported dysfunctional eating patterns were associated with caregiver- and child-reported frequency of painful episodes.

Stigma and optimism in adolescents and young adults with cystic fibrosis.

BACKGROUND: Despite increased life expectancy among patients with cystic fibrosis (CF), few studies have examined coping among adolescents and young adults with CF. Previous research suggests that stigma associated with chronic disease is related to worse physical and psychological health, but optimism may be protective. This study examined stigma and optimism among patients with CF. METHODS: Seventy-two patients with CF (ages 14 to 25) completed a self-report questionnaire assessing stigma, distress, CF-specific quality of life (QoL), and optimism. Objective health data were recorded from patient medical records. RESULTS: Greater stigma was associated with lower pulmonary function, QoL, and optimism. Stigma was positively correlated with distress. Optimism moderated the relationship between stigma and anxiety (p<0.001), and between stigma and emotional functioning (p<0.01). CONCLUSIONS: Stigma is related to worse lung function and psychological health in patients with CF, but higher levels of optimism may act as a protective factor.