Palliative care referral criteria and application in pediatric illness care: A scoping review.

BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. AIM: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. DESIGN: A scoping review with a content analysis approach to summarize results. DATA SOURCES: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. RESULTS: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. CONCLUSIONS: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.

Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer.

Background: Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. Methods: Nineteen parents (18 mothers; median 35 years old, range 26-48 years) of children (6-12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child's trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. Results: Parents perceived the app to (1) elicit the child's voice about his/her symptom experience; (2) provide a supportive and safe environment for the child to report symptoms; and (3) create an opportunity to facilitate communication between the child, parent, and clinical team. Parents expressed a willingness for their child to represent his/her experience with the app so that they could make informed decisions regarding symptom care. Discussion: Perceived benefits of the app extended to parents as they described developing further insight into their child's cancer experience. The knowledge gained allowed parents the potential to enhance symptom communication and supportive care strategies. Future research should further evaluate how mHealth tools facilitate shared symptom management between children receiving treatment for cancer and their caregivers.

Symptoms and daily experiences reported by children with cancer using a game-based app.

PURPOSE: Mobile health (mHealth) resources, including apps, are emerging as resources to support children in tracking symptoms and other health-related data. The purpose of this study was to describe symptoms and daily experiences reported by elementary school-age children receiving treatment for cancer using the newly developed Color Me Healthy app. DESIGN AND METHODS: Participants in this descriptive study were children 6-12 years of age, who were receiving cancer treatment at a free-standing children's hospital in the Intermountain West of the United States. Children were requested to use the app for at least five days between clinical visits. Children's app-reported data were extracted from individual user accounts for analysis. Quantitative data were summarized descriptively. Qualitative data were summarized using qualitative content analysis. RESULTS: Nineteen children (6-12 years; median 8 years; 7 females) completed 107 days of app use. All children reported symptoms at least once, and 14 reported at least one day with a symptom of moderate or greater severity. Daily experiences reported through the app reflected children's engagement in usual childhood experiences while also describing life with cancer, including symptoms. CONCLUSIONS: Elementary school-age children are capable of self-reporting symptoms using a symptom reporting app, providing preliminary evidence for the potential benefits and clinical relevance of mHealth resources to support health outcomes within this population. PRACTICE IMPLICATIONS: Clinicians should anticipate and support ongoing symptom management needs between clinical visits. Children's self-reported data can promote a person-centered approach to symptom assessment and management.

Communication of pain by school-age children with cancer using a game-based symptom assessment app: A secondary analysis.

PURPOSE: To evaluate the self-reported pain experiences of school-age children with cancer participating in a feasibility trial of a game-based symptom assessment app. METHOD: Nineteen children (median: 8 years, range 6-12 years old) receiving cancer treatment were recruited to complete five days of symptom tracking between clinical visits using a symptom assessment app. Children could report pain as a general symptom with the ability to further localize pain on an avatar. Children could also describe symptoms in response to the app's free-text questions or the app's diary. Descriptive statistics characterized reports of pain frequency, severity, bother, and location. Free-text responses were examined for pain-related statements and analyzed using content analysis. RESULTS: All 19 children documented pain on at least one day of app reporting between clinical visits. Pain was most frequently recorded as of mild severity and mild bother. Participants localized pain most frequently to the head, followed by the stomach, chest, extremities, and mouth. Eleven children documented 32 qualitative statements which included rich descriptions of pain-related topics (i.e., "my port hurts a little") and location (i.e., "my vision aching"). CONCLUSIONS: These results demonstrate that school-age children with cancer are willing to describe their ambulatory pain experiences on a game-based mobile app through quantitative reports and by using narrative descriptions. Additionally, these findings can potentially guide clinicians in using multiple approaches to elicit a clinically meaningful evaluation of pain in this population.

Investigating key predictors of persistent low back pain: A focus on psychological stress.

AIM: To investigate the degree to which psychological stress, self-reported pain scores, and pain sensitivity during an acute state of low back pain (LBP) predict the development of persistent LBP trajectories. BACKGROUND: Identifying which factors influence LBP trajectories is critical to understand why some individuals experience persistent LBP and to illuminate areas for nursing intervention. METHODS: A secondary data analysis of a prospective study examining trajectories of LBP was conducted. The sample was comprised of 217 adults with acute-onset LBP recruited from the community and followed over 24 weeks. Variables of interest included demographic data, perceived stress scores, self-reported pain scores, and somatosensory characteristics collected within the first 4 weeks of LBP onset. The data were analyzed using non-parametric bivariate comparisons and a semi-parametric Cox proportional hazards model with interval-censoring. RESULTS: Individuals with higher psychological stress scores were less likely to experience pain resolution (Hazard ratio [HR] = 0.555, 95% confidence interval [CI] = 0.36-0.85, p = 0.02). After adjustment for covariates in the final model, the analysis revealed household income (HR = 2.79, 95% CI [1.63-4.67], p < 0.001) to be the dominant predictor of LBP persistence in this sample. CONCLUSION: Heightened psychological stress and pain severity as well as decreased pressure pain thresholds were indicated as influential factors of LBP trajectories. Household income was identified as the dominant predictor, demonstrating that individuals with a higher household income were more likely to resolve their pain. Strategies which integrate assessment of stress, self-reported pain scores, pain sensitivity, and social determinants for patients experiencing pain are needed to advance nursing care.

A Role for Global DNA Methylation Level and IL2 Expression in the Transition From Acute to Chronic Low Back Pain.

Objectives: The transition from acute low back pain (aLBP) to chronic LBP (cLBP) results from a variety of factors, including epigenetic modifications of DNA. The aim of this study was to (1) compare global DNA (gDNA) methylation and histone acetylation at LBP onset between the aLBP and cLBP participants, (2) compare mRNA expression of genes with known roles in the transduction, maintenance, and/or modulation of pain between the aLBP and cLBP participants, (3) compare somatosensory function and pain ratings in our participants, and (4) determine if the aforementioned measurements were associated. Methods: A total of 220 participants were recruited for this prospective observational study following recent onset of an episode of LBP. We retained 45 individuals whose gDNA was of sufficient quality for analysis. The final sample included 14 participants whose pain resolved within 6 weeks of onset (aLBP),15 participants that reported pain for 6 months (cLBP), and 16 healthy controls. Participants were subjected to quantitative sensory testing (QST), blood was drawn via venipuncture, gDNA isolated, and global DNA methylation and histone acetylation, as well as mRNA expression of 84 candidate genes, were measured. Results: Individuals that develop cLBP display multimodal somatosensory hypersensitivity relative to aLBP participants. cLBP participants also had significantly lower global DNA methylation, which was negatively correlated with interleukin-2 (IL2) mRNA expression. Discussion: cLBP is characterized by somatosensory hypersensitivity, lower global DNA methylation, and higher IL2 expression level compared to those whose pain will resolve quickly (aLBP). These results suggest potential diagnostic and therapeutic relevance for global DNA methylation and IL2 expression in the pathology underlying the transition from acute to chronic LBP.

Morphology and chemical identity of periarticular and vascular calcification in a patient with the rare genetic disease of arterial calcification due to deficiency of CD73 (ACDC).

A 54-year old female patient with the genetic disease of arterial calcification due to deficiency of CD73 was studied under the Undiagnosed Disease Program of the National Institutes of Health. She presented with symptoms of claudication in her 40s and later developed arthritic symptoms, ectopic calcification in her left hand and severe arterial calcifications of the lower extremities. Since little was known about the composition of the calcifications in arterial calcification due to deficiency of CD73, we investigated their chemical identity and microscopic morphology in this patient with imaging and x-ray diffraction analysis. We found that, microscopically, the bulk calcifications consisted of fragments of either solid or porous internal structure. Both periarticular and arterial calcifications were primarily hydroxyapatite crystals of the same crystalline anisotropy, but different crystalline grain sizes. This was consistent with the presence of hydroxyapatite crystals along with birefringent calcium pyrophosphate dihydrate crystals in the synovial fluid of the patients by polarized light microscopy. The result suggests that tissue calcification in both locations follow a similar biochemical mechanism caused by an increase in extracellular tissue-nonspecific alkaline phosphatase activity.

A Systematic Review of Biological Mechanisms and Chronic Pain Outcomes During Stress Reduction Interventions.

BACKGROUND: Nonpharmacologic stress reduction interventions provide an opportunity to modify chronic pain trajectories; however, the biological mechanisms underlying these interventions are poorly understood. OBJECTIVES: To examine clinical literature published in 2012-2018 with the goals of (1) identifying which biological mechanisms or biomarkers are currently being measured in nonpharmacologic stress reduction intervention studies for individuals with chronic pain and (2) evaluating the evidence to determine whether these stress reduction interventions lead to changes in (a) pain outcomes and/or (b) measured biomarkers. DATA SOURCES: Scientific articles in the electronic databases PubMed/Medline, Cumulative Index of Nursing and Allied Health Literature, PsychINFO, and SCOPUS following the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines. STUDY SELECTION: Randomized controlled trials and quasi-experimental studies that recruited subjects with a chronic pain condition, examined a relationship between a nonpharmacologic stress reduction intervention and pain-related outcome(s), and included measurement of a biomarker. RESULTS: The 13 articles that met inclusion criteria spanned four nonpharmacologic stress reduction categories: mindfulness-based stress reduction, physical exercise, manual therapies, and biofeedback. Methods for studying biomarkers included measuring biological samples, neurological function, and autonomic control. Although all studies investigated both biological measures and pain outcomes, only three demonstrated an association between the biomarker(s) and pain-related outcomes. CONCLUSIONS: The results of this review highlight the complex nature of stress-pain relationships and the lack of rigorous clinical research identifying specific stress-related biological factors that modulate pain outcomes. Stress reduction interventions remain a favorable method for symptom management in patients living with chronic pain, but consistency in study measures and design is needed for robust evaluation.