Caregiver distress: A mixed methods evaluation of the mental health burden of caring for children with bladder exstrophy.

Introduction: Caring for children with bladder exstrophy-epispadias complex (BEEC) exacts a long-term emotional toll on caregivers. Previous studies leave a gap in understanding the impact that caring for a child with BEEC has on caregivers in low- and middle-income countries (LMIC). We hypothesize that families and caregivers experience psychological distress that has long gone unaddressed. Materials and methods: From 2018 to 2020, researchers conducted a multi-method evaluation of caregiver distress with participants recruited as part of the annual International Bladder Exstrophy Collaboration based in Ahmedabad, Gujarat, India. In 2018, pilot data was collected through cognitive interviews. In 2019, researchers conducted structured interviews predicated on themes from the previous year, which subsequently prompted formal mental health screenings in 2020. Caregivers who reported suicidal thoughts were immediately referred for intervention. Results: In 2018, caregivers described the primary source of stigma arose from their village (n = 9, 26.5%). Caregivers also identified long-term concerns (n = 18, 52.9%), including future fertility and marital prospects, as sources of anxiety. In 2019, caregivers substantiated preliminary findings with the primary source of anticipated (n = 9, 31%) and experienced (n = 19, 65.5%) stigma again stemming from their communities. Both cohorts identified the collaboration as a positive source of support (n = 23, 36.5%). In 2020, caregivers stated decreased emotional wellbeing as number of subsequent repairs increased (n = 54, 75%, p = 0.002). Caregivers of children who underwent initial surgery within 5 years of screening reported higher anxiety (n = 46, 63.8%) and this was exacerbated as the number of subsequent repairs increased (p = 0.043). Conclusion: Complex, long-term course of care, including additional surgeries, significantly impacts caregiver distress in the LMIC setting. Screening for caregivers of children with complex congenital anomalies, like BEEC, should be an essential element of any comprehensive effort to alleviate the global burden of disease.

Pain Management in Children During the COVID-19 Pandemic.

PURPOSE OF REVIEW: For many children, the SARS-CoV-2 pandemic has impacted the experience and treatment of their pain. This narrative review draws from the pain literature and emerging findings from COVID-19 research to highlight potentially meaningful directions for clinical consideration and empirical inquiry in the months and years to come. RECENT FINDINGS: COVID-19 has been linked to diffuse acute pains as well as chronic pain sequelae. Contextual factors known to increase vulnerability for pain and associated functional disability have been exacerbated during the pandemic. Beyond these salient concerns has been the remarkable resilience demonstrated by patients and providers as healthcare systems have sought to harness creativity and innovative digital solutions to support optimal child wellbeing throughout this crisis. SUMMARY: Ongoing research is needed to elucidate the short- and long-term effects of the pandemic on children's pain and to consider how the delivery of treatment via digital technology has impacted existing paradigms of pain management.

Yoga and Tai Chi: a mind-body approach in managing respiratory symptoms in obstructive lung diseases.

PURPOSE OF REVIEW: Chronic obstructive pulmonary disease (COPD) is characterized by airflow limitation because of airway and/or alveolar abnormalities. Symptoms include dyspnea, cough, chronic sputum production. As the third-ranked cause of death as well as disability-adjusted life years (DALYs), it poses a significant burden on patients, families, healthcare system and society. Regular physical activity is linked to decrease in morbidity and mortality associated with COPD, but implementation remains challenging. There is a need for community-based interventions that promote physical activity. Yoga and Tai Chi are widely available in the community and have been shown to be beneficial in patients with COPD as well as many of the co-morbid conditions associated with COPD. RECENT FINDINGS: Yoga and Tai Chi have been found to be more effective than usual care in COPD with clinically meaningful improvements in 6-min walk distance (6MWD), forced expiratory volume in 1 s (FEV1), and health-related quality of life (HRQoL). They have also been found to be comparable to pulmonary rehabilitation interventions. SUMMARY: Yoga and Tai Chi provide community-based options for patients with COPD to improve their physical activity, quality of life, and pulmonary function.

A Model for Sustained Collaboration to Address the Unmet Global Burden of Bladder Exstrophy-Epispadias Complex and Penopubic Epispadias: The International Bladder Exstrophy Consortium.

Importance: International collaboration to alleviate the massive burden of surgical disease is recognized by World Health Organization as an urgent need, yet the surgical mission model to treat reconstructive surgical challenges is often constrained in ensuring adequate patient follow-up, optimal outcomes, and sustainability. Objective: To determine whether a collaboration predicated on long-term commitment by surgeons returning to the same institution annually combined with an experienced host surgical team and infrastructure to ensure sustained patient follow-up could provide surgical care with acceptable outcomes to treat bladder exstrophy-epispadias complex (BE) and penopubic epispadias (PE). Design, Setting, and Participants: In this prospective, observational study, long-term collaboration was created and based at a public hospital in Ahmedabad, India, between January 2009 and January 2015. The entire postoperative cohort was recalled in January 2016 for comprehensive examination, measurement of continence outcomes, and assessment of surgical complications. Seventy-six percent of patients (n = 57) who underwent complete primary repair of exstrophy during the study interval returned for annual follow-up in 2016 and formed the study cohort: 23 patients with primary BE, 19 patients with redo BE, and 11 patients with PE repair. Main Outcomes and Measures: Demographics, operative techniques, and perioperative complications were recorded. A postoperative protocol outlining procedures to ensure monitoring of study participants was followed including removal of ureteral stents, urethral catheter, external fixators, imaging, and patient discharge. Results: Of the 57 patients, 4 were excluded because they underwent ureterosigmoidostomy. Median age at time of surgery was 3 years (primary BE), 7 years (redo BE), and 10 years (PE), with median follow-up of 3 years, 5 years and 3 years, respectively; boys made up more than 70% of each cohort (n = 17 for primary BE, n = 15 for redo BE, and n = 9 for PE). All BE and 3 PE repairs (27%) were completed with concurrent anterior pubic osteotomies. Seventeen of 53 patients (32%) experienced complications. Only 1 patient with BE (4%) had a bladder dehiscence and was repaired the following year. Conclusions and Relevance: A unique surgical mission model consisting of an international collaborative focused on treating the complex diagnoses of BE and PE offers outcomes comparable with those in high-income countries, demonstrating a significant patient retention rate and an opportunity to rigorously study outcomes over an accelerated interval owing to the high burden of disease in India. Postoperative care following a systematized algorithm and rigorous follow-up is mandatory to ensure safety and optimal outcomes.

Erythromelalgia in the pediatric patient: role of computed-tomography-guided lumbar sympathetic blockade.

Erythromelalgia (EM) is an uncommon condition characterized by erythema, increased skin temperature, and burning pain, most frequently occurring in the lower extremities. The pain is generally very severe and treatment can be extremely challenging, especially in the pediatric and adolescent population. We report a series of three cases of primary EM in pediatric patients involving the lower extremities, refractory to medical treatment that responded favorably to computed-tomography-guided lumbar sympathetic blockade. There was a significant improvement in pain scores, quality of life, and overall function as well as decreased analgesic requirements. Lumbar sympathetic blockade should be considered as a therapeutic modality in pediatric and adolescent patients with EM who are refractory to other treatments.

Patterns of utilization of complementary and alternative medicine in 2 pediatric gastroenterology clinics.

OBJECTIVES: The aim of the present study was to assess the prevalence and patterns of complementary and alternative medicine (CAM) use among pediatric patients with gastrointestinal (GI) disorders at academic clinics in Canada. METHODS: The survey was carried out at 2 hospital-based gastroenterology clinics: the Stollery Children's Hospital in Edmonton and the Children's Hospital of Eastern Ontario (CHEO) in Ottawa. RESULTS: CAM use at the Stollery was 83% compared with 36% at CHEO (P < 0.001). The most common reason for not using CAM was lack of knowledge about it. Most respondents felt comfortable discussing CAM in their clinic and wanted more information on CAM. The most common CAM products being taken were multivitamins (91%), calcium (35%), vitamin C (32%), probiotics (14%), and fish oil/omega-3 fatty acids (13%). The most common CAM practices being used were massage (43%), chiropractic (27%), faith healing (25%), and relaxation (18%). Most respondents believed that CAM was helpful, and most of the 23 reported adverse effects were minor. Seven were reported as moderate, and 3 were reported as severe. Many (42%) patients used CAM at the same time as prescription medicines, and of these patients, concurrent use was discussed with their physician (76%) or pharmacist (52%). CONCLUSIONS: CAM use is high among pediatric patients with GI disorders and is much greater among those in Edmonton than in Ottawa. Most respondents reported their CAM use as helpful, with little or no associated harm. Many patients fail to disclose their concurrent use of CAM and conventional medicines to their doctors, increasing the likelihood of interactions.

Reiki therapy for postoperative oral pain in pediatric patients: pilot data from a double-blind, randomized clinical trial.

PURPOSE: To examine the effects of Reiki as an adjuvant therapy to opioid therapy for postoperative pain control in pediatric patients. METHODS: This was a double-blind, randomized controlled study of children undergoing dental procedures. Participants were randomly assigned to receive either Reiki therapy or the control therapy (sham Reiki) preoperatively. Postoperative pain scores, opioid requirements, and side effects were assessed. Family members were also asked about perioperative care satisfaction. Multiple linear regressions were used for analysis. RESULTS: Thirty-eight children participated. The blinding procedure was successful. No statistically significant difference was observed between groups on all outcome measures. IMPLICATIONS: Our study provides a successful example of a blinding procedure for Reiki therapy among children in the perioperative period. This study does not support the effectiveness of Reiki as an adjuvant therapy to opioid therapy for postoperative pain control in pediatric patients.

Safety, tolerability, and short-term efficacy of intravenous lidocaine infusions for the treatment of chronic pain in adolescents and young adults: a preliminary report.

OBJECTIVE: To provide pediatric care providers with insight into lidocaine infusions for analgesia. AIM: This retrospective review was conducted to describe lidocaine infusions for chronic refractory pain within the adolescent and young adult pain population. SETTING: Although lidocaine infusions have been used for pain management in adults, their analgesic utility in the adolescent and young adult population is limited and so is the evidence for their efficacy and safety. METHODS: After Institutional Board Review approval, a retrospective review of efficacy and safety data for analgesic use of lidocaine was conducted. RESULTS: Fifteen patients received 58 infusions with 76% receiving relief where maximum relief was seen among patients with starting pain scores ≥6/10 (mean reduction 2.3 vs. 0.5, P value = 0.006) and when a patient had three or more infusions (mean reduction 1.7 compared with 1.2). No serious side effects were encountered, but only mild or moderate side effects that did not require any intervention. Incidence of tingling or numbness and nausea or vomiting seemed to correlate with total dose of lidocaine per kilogram body weight. Patients reported reduced pain scores (6.3 ± 2.3 to 4.6 ± 2.5 before compared with after the infusion [as mean ± standard deviation]) during 80% of infusions. CONCLUSIONS: Our limited experience suggests that lidocaine infusions are well tolerated in the adolescent and young adult pain population, with side effects resolving quickly with interruption or discontinuation of the infusion if necessary. Future studies are warranted to examine safety, efficacy, mechanism of actions, and its long-term impact on a developing central nervous system.

Cost effectiveness analysis for nursing research.

BACKGROUND: With ever-increasing pressure to reduce costs and increase quality, nurses are faced with the challenge of producing evidence that their interventions and care provide value. Cost effectiveness analysis (CEA) is a tool that can be used to provide this evidence by comparative evaluation of the costs and consequences of two or more alternatives. OBJECTIVES: The aim of this article is to introduce the essential components of CEA to nurses and nurse researchers with the protocol of a recently funded cluster randomized controlled trial as an example. METHODS: This article provides (a) a description of the main concepts and key steps in CEA and (b) a summary of the background and objectives of a CEA designed to evaluate a nursing-led pain and symptom management intervention in rural communities compared with the current usual care. DISCUSSION: As the example highlights, incorporating CEA into nursing research studies is feasible. The burden of the additional data collection required is offset by quantitative evidence of the given intervention's cost and impact using humanistic and economic outcomes. At a time when U.S. healthcare is moving toward accountable care, the information provided by CEA will be an important additional component of the evidence produced by nursing research.

Reiki training for caregivers of hospitalized pediatric patients: a pilot program.

To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant's feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child's care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed.

Fever following an Epidural Blood Patch in a Child.

There is increasing evidence that children suffer from the consequences of spontaneous or iatrogenic intracranial hypotension. Pediatric epidural blood patch is gaining popularity because of its ability to alter cerebrospinal fluid dynamics and to alleviate headaches attributed to low cerebrospinal fluid pressure. There is, however, still not enough data to document the safety profile of an epidural blood patch. Here we describe a case of a fever in a child temporally related to the administration of an epidural blood patch. This case depicts the dilemmas in making the diagnosis and instituting treatment for complications of this procedure in the pediatric population.

Role of telehealth/videoconferencing in managing cancer pain in rural American Indian communities.

OBJECTIVES: This project is aimed at determining the feasibility and effect of using videoconferencing to deliver cancer-related pain management education and case consultation to health care providers in rural AI/AN communities. METHODS: The project provided four educational sessions and nine case conferences to health care providers at tribal clinics in Washington State and Alaska using videoconferencing with pain experts at the University of Washington. A cross-sectional, descriptive study design was used to survey the participating providers. Measures included satisfaction with the telehealth system and self-perceived competence in pain management. RESULTS: Fifty-two providers from 11 sites attended the educational sessions. Ninety-three providers from 16 sites participated in the case conferences. Case conference participants scored significantly higher on perceived competence in treating pain compared with clinic providers who did not attend. Educational session participants and case conference participants both reported a high level of satisfaction with videoconferencing. CONCLUSIONS: Telehealth is a feasible and effective way to deliver cancer-related pain management education and increase competence among rural health care providers.

Acupuncture therapy for infants: a preliminary report on reasons for consultation, feasibility, and tolerability.

OBJECTIVES/AIMS: The aim of this retrospective review was to determine the feasibility, safety, and potential therapeutic effects of acupuncture in an inpatient infant population and to obtain data that would support the design of a randomized, controlled trial of acupuncture in infants. BACKGROUND: Hospitalized infants are often exposed to sedative and analgesic medications to facilitate intensive and invasive medical care. With increasing concern about the potential neurotoxic effects of common analgesic and sedative medications, minimizing an infant's exposure to such agents is desirable. Acupuncture can be therapeutic in adults and children, but data in infants are lacking. METHODS/MATERIALS: We performed a retrospective chart review of infants who received acupuncture during hospitalizations between 2008 and 2010. Demographic data, diagnoses, reason for acupuncture consult, ventilator settings, sedative/analgesic medication regimens, details of acupuncture therapy, and adverse effects were among data collected. RESULTS: Ten infants were identified in this review, seven of whom had agitation issues, two of whom had feeding difficulties, and one had both symptoms. Six of the eight infants with agitation had a decrease in the use of sedative and analgesic medications over the acupuncture therapy period, and four of five initially requiring mechanical ventilation were successfully weaned. One of the three infants with oral aversion transitioned rapidly to oral intake. Acupuncture therapy was well tolerated, and there were no complications observed. CONCLUSIONS: In this small group of hospitalized infants, acupuncture was found to be safe, well tolerated, and therapeutic. More studies are warranted to define the role of acupuncture in this population.

Enhancing access to cancer education for rural healthcare providers via telehealth.

Healthcare providers serving rural populations face numerous barriers to accessing educational programming. Difficulties accessing continuing professional education contribute to the challenges of providing comprehensive health care in the rural setting. Telehealth can inform and educate rural providers about changes in medicine and evidence-based practices, both of which may help them provide quality care. The Native People for Cancer Control Telehealth Network used telehealth technology to deliver a cancer education series in 2008 and 2009 to Washington and Alaska rural healthcare providers who treated American Indians and Alaska Native people. Customizing presentation content to providers' educational needs encouraged attendance. Evaluation indicated videoconferencing technology was positively received for delivery of the educational sessions. This series demonstrated videoconferencing was a satisfactory means of delivering real-time, interactive cancer educational programming to providers who might not otherwise have access to such programs.

A review of the experience, epidemiology, and management of pain among American Indian, Alaska Native, and Aboriginal Canadian peoples.

UNLABELLED: Substantial literature suggests that diverse biological, psychological, and sociocultural mechanisms account for differences by race and ethnicity in the experience, epidemiology, and management of pain. Many studies have examined differences between Whites and minority populations, but American Indians (AIs), Alaska Natives (ANs), and Aboriginal peoples of Canada have been neglected both in studies of pain and in efforts to understand its biopsychosocial and cultural determinants. This article reviews the epidemiology of pain and identifies factors that may affect clinical assessment and treatment in these populations. We searched for peer-reviewed articles focused on pain in these populations, using PubMed, CINAHL, Cochrane, and the University of New Mexico Native Health Database. We identified 28 articles published 1990 to 2009 in 3 topic areas: epidemiology of pain, pain assessment and treatment, and healthcare utilization. A key finding is that AI/ANs have a higher prevalence of pain symptoms and painful conditions than the U.S. general population. We also found evidence for problems in provider-patient interactions that affect clinical assessment of pain, as well as indications that AI/AN patients frequently use alternative modalities to manage pain. Future research should focus on pain and comorbid conditions and develop conceptual frameworks for understanding and treating pain in these populations. PERSPECTIVE: We reviewed the literature on pain in AI/ANs and found a high prevalence of pain and painful conditions, along with evidence of poor patient-provider communication. We recommend further investigation of pain and comorbid conditions and development of conceptual frameworks for understanding and treating pain in this population.

Developing the Native People for Cancer Control Telehealth Network.

OBJECTIVE: We aimed to develop a telehealth network to deliver postdiagnosis cancer care clinical services and education to American Indian and Alaska Native patients, their families, and their healthcare providers. We also sought to identify the challenges and opportunities of implementing such a telehealth-based application for this rural and underserved population. MATERIALS AND METHODS: We followed a participatory formative evaluation approach to engage all stakeholders in the telehealth network design and implementation. This approach allowed us to identify and address technical and infrastructure barriers, lack of previous experience with telehealth, and political, legal, and historical challenges. RESULTS: Between September 2006 and August 2009, nine tribal clinics in Washington and 26 clinical sites in Alaska had participated in the telehealth network activities. Network programming included cancer education presentations, case conferences, and cancer survivor support groups. Twenty-seven cancer education presentations were held, with a total provider attendance of 369. Forty-four case conferences were held, with a total of 129 cases discussed. In total, 513 patient encounters took place. Keys to success included gaining provider and community acceptance, working closely with respected tribal members, understanding tribal sovereignty and governance, and working in partnership with cultural liaisons. CONCLUSION: The telehealth network exceeded expectations in terms of the number of participating sites and the number of patients served. Following a participatory formative evaluation approach contributed to the success of this telehealth network and demonstrated the importance of community involvement in all stages of telehealth system design and implementation.

Attitudes, patterns of recommendation, and communication of pediatric providers about complementary and alternative medicine in a large metropolitan children's hospital.

The authors conducted an e-mail survey of their medical staff to explore the attitudes, patterns of recommendation, and communication of pediatric providers about complementary and alternative medicine (CAM) in a large metropolitan children's hospital. Two thirds of the respondents reported awareness about their patients' CAM therapy use (65%) and recommended CAM therapy to their patients (67%). Providers who reported personal use of CAM (71%) were more likely to recommend CAM to their patients compared with those who do not (76% vs 45%; P < .05). One half of pediatric providers reported occasional consultation with their patient's CAM provider, but bidirectional communication was rare (4%). Specific changes in care based on a CAM provider's recommendations were also unusual (4%). Despite the positive attitudes about and willingness to recommend CAM by pediatric providers, communication between these clinicians and CAM providers may be less than ideal.

Intractable pruritus after traumatic spinal cord injury.

BACKGROUND: This report describes a young woman with incomplete traumatic cervical spinal cord injury and intractable pruritus involving her dorsal forearm. METHOD: Case report. FINDINGS: Anatomic distribution of the pruritus corresponded to the dermatomal distribution of her level of spinal cord injury and vertebral fusion. Symptoms were attributed to the spinal cord injury and possible cervical root injury. Pruritus was refractory to all treatments, including topical lidocaine, gabapentin, transcutaneous electrical nerve stimulation, intravenous Bier block, stellate ganglion block, and acupuncture. CONCLUSIONS: Further understanding of neuropathic pruritus is needed. Diagnostic workup of intractable pruritus should include advanced imaging to detect ongoing nerve root compression. If diagnostic studies suggest radiculopathy, epidural steroid injection should be considered. Because the autonomic nervous system may be involved in complex chronic pain or pruritic syndromes, sympatholysis via such techniques as stellate ganglion block might be effective.

Case report: delayed presentation of postural headache in an adolescent girl after microscopic lumbar discectomy.

PURPOSE: To discuss the diagnostic and therapeutic challenges presented by an adolescent girl with delayed postural headaches and photophobia that occurred three months after an apparently uncomplicated microscopic lumbar discectomy. CLINICAL FEATURES: A previously healthy girl was admitted to our hospital with a one-week history of an unremitting, frontal-retroorbital postural headache and photophobia. Three months before admission, the patient had undergone a L5-S1 left hemilaminotomy and foraminotomy with microdiscectomy for excision of a herniated intervertebral disc. Conservative treatment failed to provide symptomatic relief. Cranial magnetic resonance imaging showed enhancement of the pachymeninges, consistent with intracranial hypotension. A chronic cerebrospinal leak was identified by high-resolution computed tomography (CT) myelography. Epidural blood patches were performed, with and without CT guidance, that provided temporary relief of the patient's symptoms; however, direct suture plication of the dural tear was eventually required for definitive treatment. CONCLUSION: This case emphasizes that delayed presentation of dural injury may occur after lumbar surgery and describes the potential therapeutic implications for this unusual complication.

Acupuncture for pediatric pain and symptom management.

Over 2 million people in the United States are estimated to use acupuncture annually, primarily for musculoskeletal complaints and pain management, evidence that the integration of acupuncture into Western health care is increasing. Despite the increase in the quality of trials demonstrating the efficacy and safety of acupuncture in medicine, the pediatric acupuncture literature lacks the quantity and quality of the same body of evidence. Contributing to this paucity of evidence may be the acceptability of acupuncture in pediatric patients. There is an urgent need for high-quality randomized controlled trials on the use of acupuncture in the pediatric population. This review aims to highlight the evidence for use of acupuncture in pain and symptom management.