Incorporating integrative medicine and patient preferences into a pilot interdisciplinary sickle cell wellness clinic.

OBJECTIVE: Sickle Cell Disease (SCD) is an inherited blood disorder that includes acute pain episodes and chronic pain that can dramatically impact quality of life and goal-achievement. Our staff had limited success in connecting families with the Pain, Palliative Care and Integrative Medicine Clinic (PPCIM) to receive specialized skills for pain management. We created a partnership between Hematology and PPCIM to provide SCD patients/families with needed resources. DESIGN/SETTING: In 2016, key stakeholders collaborated to create a Sickle Cell Wellness Clinic (SCWC) clinic to provide families access to integrative medicine and wellness strategies. Design/structure, based on family focus group data and staff expertise, included a half-day, 7-discipline clinic housed in the PPCIM space. Patients with SCD, ages 8-20, learned strategies in an effort to improve health care utilization and increase overall quality of life. MAIN OUTCOME MEASURES/RESULTS: Feedback from two successful pilot clinics in 2017 was incorporated into the formal roll-out of SCWC in 2018. SCWCs continued monthly for one year, serving a total of 20 families post-pilot. SCD patients increased follow-up appointment engagement in the PPCIM clinic following SCWC and reported high levels of satisfaction with their healthcare experience. CONCLUSIONS: It is feasible to run a multidisciplinary clinic focused on pain management, coping skills, and healthy living with SCD. Providers benefited from the opportunity to collaborate with other disciplines. Patient and family feedback was positive, highlighted benefits of being introduced to new modalities, and reported advantages of meeting other patients/families in a new setting.

Pain Management In Pediatric Patients With Postural Orthostatic Tachycardia Syndrome: Current Insights.

Pediatric patients with postural orthostatic tachycardia syndrome (POTS) often present with co-occurring struggles with chronic pain (POTS+pain) that may limit daily activities. POTS is a clinical syndrome characterized by orthostatic symptoms and excessive postural tachycardia without orthostatic hypotension. Active research from the medical and scientific community has led to controversy over POTS diagnosis and treatment, yet patients continue to present with symptoms associated with POTS+pain, making treatment recommendations critical. This topical review examines the literature on diagnosing and treating pediatric POTS+pain and the challenges clinicians face. Most importantly, clinicians must employ an interdisciplinary team approach to determine the ideal combination of pharmacologic (e.g., fludrocortisone), non-pharmacologic (e.g., physical therapy, integrative medicine), and psychological (e.g., cognitive behavioral therapy, psychoeducation) treatment approaches that acknowledge the complexity of the child's condition, while simultaneously tailoring these approaches to the child's personal needs. We provide recommendations for treatment for youth with POTS+pain based on the current literature.

Improving Distress and Behaviors for Parents of Adolescents With Chronic Pain Enrolled in an Intensive Interdisciplinary Pain Program.

OBJECTIVES: Intensive interdisciplinary treatment is emerging as an effective treatment of chronic pain in youth. These programs often include a parental component with the belief that targeting parental distress and responses to a child's pain will improve outcomes. However, few studies have evaluated the impact of a parental intervention in the interdisciplinary treatment of pediatric chronic pain. The present study consists of a nonrandomized pre-post design to evaluate change in psychological and behavioral functioning of parents who participated in intensive parent programming that utilized cognitive-behavioral therapy and acceptance and commitment therapy, delivered within the context of an interdisciplinary intensive 3-week pain treatment program for youth with chronic pain. MATERIALS AND METHODS: Two hundred twelve parents and their children participated in the study, with 116 participants completing 3-month follow-up measures. Parents completed measures of depressive symptoms, pain catastrophizing, protective responses, and psychological flexibility at admission, discharge, and 3 months after the program. Child functional disability was assessed at the same time points. We examined change in parent factors over time, while controlling for change in child distress. RESULTS: Parents reported significant improvements in all areas of functioning from admission to discharge and improvements were maintained at 3-month follow-up. DISCUSSION: This study provides evidence suggesting parent interventions can be effective in reducing parent distress and behaviors known to be associated with child outcomes.

Youth with Chronic Pain and Postural Orthostatic Tachycardia Syndrome (POTS): Treatment Mediators of Improvement in Functional Disability.

Intensive pain rehabilitation programs are effective in increasing functioning for youth with chronic pain (CP). However, the utility of such programs for youth with CP and co-morbid postural orthostatic tachycardia syndrome (POTS) is rarely examined. In addition, studies examining mediators of treatment for CP are sparse. This paper compares treatment outcomes for youth with CP (n = 117) and youth with CP + POTS (n = 118). Additionally, depression and pain catastrophizing were tested as potential mediators of treatment effects. Significant treatment improvements were found for functional disability, depression, pain catastrophizing, and perceived pain intensity but with no differences between groups. Improvements in depressed mood, pain catastrophizing (helplessness subscale), and pain severity partially mediated functioning improvement. Pain severity was not a significant mediator in the CP + POTS group. We concluded that depression and pain catastrophizing, especially the helplessness domain, can impact functioning improvement in adolescents with CP and POTS and are particularly important to target in treatment.

Asthma-specific cognitions, self-focused attention, and fear of negative evaluation in adolescents and young adults diagnosed with childhood-onset asthma.

The present study examined the impact of asthma-specific thought intrusion (TI) and thought suppression (TS) on two cognitive-affective variables (self-focused attention and fear of negative evaluation) among adolescents and young adults (AYAs) diagnosed with childhood-onset asthma. Participants were 290 AYAs who completed assessment questionnaires and participated in a written exercise electronically. Asthma-TI and TS were reported by participants following participation in a writing assignment. Asthma-TI was associated with increased private, public, and social anxiety self-focused attention, and greater fear of negative evaluation. Interestingly, asthma-TS was not associated with these same outcome variables. Findings suggest illness-specific cognitions are associated with cognitive-affective variables and it may be important to assess for illness-specific intrusive thoughts following asthma-focused medical appointments. Additionally, findings suggest the importance of assessing asthma-TI and TS separately in order to better understand thoughts about health and psychological functioning.

Pain Assessment Methods and Interventions Used by Pediatric Psychologists: A Survey by the Pain Special Interest Group of the Society of Pediatric Psychology.

Although many valid pain-related assessment instruments and interventions exist, little is known about which are actually utilized in practice and the factors that contribute to pediatric psychologist's decisions about their use. The aim of this survey study was to present a summary of current clinical practice among pediatric psychologists in the area of pediatric pain and to identify the needs and possible resources that would enable practitioners to better implement evidence-based assessments and interventions. To accomplish this aim, the Pain Special Interest Group of the Society of Pediatric Psychology (SPP) constructed an online survey that was sent electronically to current members of the SPP list serve. Results indicated the majority of participants are guided by a theoretical model and are using evidence-based assessments and interventions, although they are not always familiar with the literature supporting their use. Providers noted evidence-based pain intervention is facilitated by assessment tools, intervention resources, and appreciation of pain interventions by multidisciplinary team members. Barriers are both logistical (clinic space and time constraints) and knowledge-based (lack of familiarity with assessments/interventions). Thus, while pediatric psychologists are progressing towards better translation of research to practice, continued educational efforts and communication among practitioners about available resources are warranted.

Parental Perceptions of Pediatric Pain and POTS-Related Disability.

Adolescents with postural orthostatic tachycardia syndrome (POTS) often have pain and functional impairment. This study evaluated how parental attributions of children's symptoms relate to child functional impairment. Adolescents with chronic pain and clinical symptoms suggestive of autonomic dysfunction (fatigue, dizziness, nausea) that attended a multidisciplinary chronic pain clinic completed measures of depression, anxiety, and functioning (n = 141). Parents of 114 of these patients completed the Parent Pain Attribution Questionnaire (PPAQ), a measure indicating the extent they believe physical and psychosocial factors account for their child's health condition. Patients were retrospectively grouped as to whether or not they had significant POTS on tilt table testing (n = 37). Greater parental attribution to physical causes was associated with increased levels of functional disability whether patients had POTS ( r = 0.45, P = .006) or not ( r = 0.25, P = .03). These results suggest that providers should advocate a more comprehensive family-oriented rehabilitative approach to treatment.

Self-esteem, Self-focused Attention, and the Mediating Role of Fear of Negative Evaluation in College Students With and Without Asthma.

OBJECTIVE: The current study investigated the mediating role of fear of negative evaluation on the relationship between self-focused attention and self-esteem among college students with and without asthma. PARTICIPANTS: Young adults with (n = 148) and without (n = 530) childhood-onset asthma were recruited from a college student population. METHODS: Self-focused attention and fear of negative evaluation measures were completed. Participants also answered questions about inclusion in a social activity. RESULTS: Higher levels of self-focused attention and fear of negative evaluation were associated with lower self-esteem in both groups within the context of social activity participation. Fear of negative evaluation mediated the relationship between self-consciousness and self-esteem. No significant differences were found between groups. CONCLUSIONS: Findings indicate significant relationships among self-focused attention, fear of negative evaluation, and self-esteem in the context of social activity participation. Further examination of self-esteem regarding participation in social activities among college students appears warranted.