The Female Self-Advocacy in Cancer Survivorship Scale: A validation study.

AIM: To develop and psychometrically test the validity of the Female Self-Advocacy in Cancer Survivorship Scale. BACKGROUND: Female cancer survivors need to self-advocate to overcome challenges associated with cancer yet no valid measure of self-advocacy exists. DESIGN: Instrument development. Mixed-mode cross-sectional survey design. PARTICIPANTS: We recruited adult females (18+ years; N = 317) with a history of invasive cancer from local and national tumour registries and advocacy organizations to complete online or paper questionnaires. METHODS: Between July 2014 - March 2015 to evaluate the construct validity based on evidence of the scale's: (1) internal structure consistent with the underlying model of self-advocacy; (2) sensitivity to differences between groups known to differ in self-advocacy skills; (3) relationships between self-advocacy and key potential predictors (openness and conscientiousness; information engagement; social support) and outcomes (symptom burden and healthcare utilization); (4) relationships between self-advocacy and related concepts (patient activation; self-advocacy within another patient population); and (5) relationships between self-advocacy and criterion measures. Analyses included an exploratory factor analysis, t tests, and bivariate correlations using validated, reliable measures for constructs. RESULTS: Evidence from all five hypotheses supported the construct validity of the Female Self-Advocacy in Cancer Survivorship Scale. The factor analysis confirmed the three underlying dimensions of self-advocacy resulting in a 20-item measure with strong internal consistency that explained almost half of response variance. CONCLUSION: The Female Self-Advocacy in Cancer Survivorship Scale is a valid, reliable measure of how well adult female cancer survivors can get their needs met in the face of adversity.

Examining the relationship between multiple primary cancers and psychological distress: A review of current literature.

OBJECTIVE: The incidence of multiple primary cancers (MPCs) is increasing, but little is known about psychological distress in this population. The purpose of this study is to review and synthesize the literature regarding what is known about psychological distress in adults who have experienced MPC diagnoses. METHODS: All potentially eligible studies identified in PubMed and CINAHL were reviewed by 2 independent evaluators, and each relevant article was assessed for methodological quality. Data were extracted, organized, and recorded using a coding log, PRISMA flow diagram, and a standardized table of evidence. Effect size (ES) values were calculated using Cohen's d. RESULTS: Five of the 562 potentially relevant articles were selected for final analysis. MPC survivors, when compared with single cancer survivors, had lower global quality of life (d = 0.32-0.37), poorer emotional role function and stress (d = 0.08-0.20), greater and more frequent distress (d = 0.11-0.37), and greater subclinical anxiety (d = 0.15). Depressive symptoms were variable (d = 0.01-0.22), and no differences between MPC and single cancer groups were identified for sleep and suicidal ideation. CONCLUSION: There is a substantial lack of evidence focused on psychological distress among the growing MPC survivor population. ES noted in the 5 studies reflect small but potentially significant increases in psychological distress in survivors of MPC compared with survivors of a single cancer. Clinicians should be aware of this at-risk population when screening for distress in cancer survivors. Suggestions for future research are provided.

The Assessment and Non-Pharmacologic Treatment of Procedural Pain From Infancy to School Age Through a Developmental Lens: A Synthesis of Evidence With Recommendations.

UNLABELLED: The 2011 IOM report stated that pain management in children is often lacking especially during routine medical procedures. The purpose of this review is to bring a developmental lens to the challenges in assessment and non-pharmacologic treatment of pain in young children. METHOD: A synthesis of the findings from an electronic search of PubMed and the university library using the keywords pain, assessment, treatment, alternative, complementary, integrative, infant, toddler, preschool, young, pediatric, and child was completed. A targeted search identified additional sources for best evidence. RESULTS: Assessment of developmental cues is essential. For example, crying, facial expression, and body posture are behaviors in infancy that indicate pain: however in toddlers these same behaviors are not necessarily indicative of pain. Preschoolers need observation scales in combination with self-report while for older children self-report is the gold standard. Pain management in infants includes swaddling and sucking. However for toddlers, preschoolers and older children, increasingly sophisticated distraction techniques such as easily implemented non-pharmacologic pain management strategies include reading stories, watching cartoons, or listening to music. DISCUSSION: A developmental approach to assessing and treating pain is critical. Swaddling, picture books, or blowing bubbles are easy and effective when used at the appropriate developmental stage and relieve both physical and emotional pain. Untreated pain in infants and young children may lead to increased pain perception and chronic pain in adolescents and adults. Continued research in the non-pharmacological treatment of pain is an important part of the national agenda.

From royal wet nurses to Facebook: The evolution of breastmilk sharing.

Wet-nursing was an essential practice that allowed for infant survival after many mothers died in childbirth. The story of wet-nursing is complicated by both religious pressures and cultural expectations of women. It is likely that these historical practices have shaped our current social, political and legislative environments regarding breastfeeding. The aim of this article is to provide a historical perspective on the practice of wet-nursing, with a focus on: 1) social views of wet nurses, 2) breastmilk evaluation and 3) the ideal wet nurse. Historical perspectives from Ancient Egypt, Ancient Greece and Rome, 19th and 20th century America and current practices are examined. An appreciation for the evolution of breastmilk sharing provides clinicians and lactation advocates with the historical origins which provided the template for current practice as it relates to donor milk, breastfeeding culture and relevant legislation.

Feasibility and Acceptability of Two Complementary and Alternative Therapies for Perceived Insufficient Milk in Mothers of Late Preterm and Early Term Infants.

Background: Complementary and alternative medicine (CAM) could be one option to address perceived insufficient milk (PIM), but there are few data comparing the effectiveness, acceptability, and safety of various CAM therapies. The purpose of this study was to describe and compare, among women delivering at 34-376/7 weeks, the feasibility and acceptability of two CAM interventions for treatment of PIM: (1) a meditation/relaxation intervention via an MP3 (Apple iPod Shuffle©) player and (2) a commercially available combination-blend herbal supplement (Motherlove: More Milk Plus Alcohol Free®). Materials and Methods: After randomization, over 9 days, women received three home visits from a lactation consultant, recorded pre/post intervention test weights and expressed milk volume, tracked daily breastfeeding behavior, and completed an end-of-study interview about the interventions. Women in each group were offered the other group's intervention on study day 9. Breastfeeding status and intervention continuation were assessed at 2 months. Results: Of 183 women screened, 11 were eligible, enrolled into, and completed the 9-day trial. Six women were randomized to the herbal supplement and 5 to meditation. One participant (meditation) stopped breastfeeding on study day 8. At 2 months, 3 of 6 women assigned to the herbal supplement and 3 of 5 women assigned to meditation were still breastfeeding; 1 (herbal supplement) was exclusively breastfeeding. Most participants were adherent to the prescribed protocols for both interventions. Interventions were generally perceived as safe, with benefits not necessarily related to increased milk supply. Conclusion: Mothers of late preterm and early term infants who had PIM found the CAM interventions acceptable and safe. The effect of CAM therapies on breastfeeding outcomes, with and without in-home lactation assistance, requires further investigation.

Comparing Advanced Practice Providers and Physicians as Providers of e-Visits.

BACKGROUND: Although electronic delivery (electronic visits [e-visits]) of healthcare services by advanced practice providers (APPs) is growing, literature defining the roles of different providers and comparing outcomes is lacking. We analyzed two e-visit models at the University of Pittsburgh Medical Center (UPMC) to compare their providers (physicians and APPs) and associated outcomes. MATERIALS AND METHODS: We identified all e-visits for the UPMC AnywhereCare Continuity (physician providers for existing patients) and Convenience (physician and APP providers for Pennsylvania residents) services (n=2,184) using Epic Systems (Verona, WI) MyChart data (November 2013-August 2014). We compared e-visits by service and provider type for patient characteristics, volume, response time, primary diagnoses, and number of prescriptions. We used statistical tests to determine differences in patient characteristics and an ordinary least square linear regression, controlling for patient characteristics, to determine differences in prescribing. RESULTS: Of the completed e-visits (n=1,791), 72.5% were with APPs, and 27.5% were with physicians. APP patients were younger, higher income, and more likely to be unmarried. Sinusitis patients were more likely to use the Continuity service, whereas those with urinary tract or upper respiratory infections were more likely to use the Convenience service. Finally, provider type was significantly associated with prescribing, with APPs prescribing more. CONCLUSIONS: Some demographic variation exists between users of APP versus physician e-visits. Provider response time seems more driven by service policy than provider type. Finally, variation exists between provider types in quantities of prescriptions written. As health systems and policymakers develop protocols and reimbursement strategies for e-visits, these model considerations will be important.

Weighing worth against uncertain work: the interplay of exhaustion, ambiguity, hope and disappointment in mothers breastfeeding late preterm infants.

Poor breastfeeding outcomes among late preterm infants (LPIs) have been attributed to inadequate breast milk transfer stemming from physiological immaturities. However, breastfeeding is more than a biological phenomenon, and it is unclear how mothers of LPIs manage other factors that may also impact the breastfeeding course. Using grounded theory methods and incorporating serial post-partum interviews with several novel data collection techniques, we examined breastfeeding establishment over a 6-8-week-period among 10 late preterm mother-infant dyads recruited from a maternity hospital in Pittsburgh, Pennsylvania, USA. We found that breastfeeding in the LPI population was a fluctuating, cascade-like progression of trial and error, influenced by a host of contextual factors and events and culminating with breastfeeding continuation (with or without future caveats for duration or exclusivity of breastfeeding) or cessation. The trajectory was explained by the basic psychosocial process Weighing Worth against Uncertain Work, which encompassed the tension among breastfeeding motivation, the intensity of breastfeeding work and the ambiguity surrounding infant behaviour and feeding cues. Several sub-processes were also identified: Playing the Game, Letting Him Be the Judge vs. Accommodating Both of Us and Questioning Worth vs. Holding out Hope. If valid, our theoretical model indicates a need for earlier, more extensive and more qualified breastfeeding support for mothers of LPIs that emphasizes the connection between prematurity and observed feeding behaviours.

Effect of Reiki therapy on pain and anxiety in adults: an in-depth literature review of randomized trials with effect size calculations.

The objective of this study was to calculate the effect of Reiki therapy for pain and anxiety in randomized clinical trials. A systematic search of PubMed, ProQuest, Cochrane, PsychInfo, CINAHL, Web of Science, Global Health, and Medline databases was conducted using the search terms pain, anxiety, and Reiki. The Center for Reiki Research also was examined for articles. Studies that used randomization and a control or usual care group, used Reiki therapy in one arm of the study, were published in 2000 or later in peer-reviewed journals in English, and measured pain or anxiety were included. After removing duplicates, 49 articles were examined and 12 articles received full review. Seven studies met the inclusion criteria: four articles studied cancer patients, one examined post-surgical patients, and two analyzed community dwelling older adults. Effect sizes were calculated for all studies using Cohen's d statistic. Effect sizes for within group differences ranged from d = 0.24 for decrease in anxiety in women undergoing breast biopsy to d = 2.08 for decreased pain in community dwelling adults. The between group differences ranged from d = 0.32 for decrease of pain in a Reiki versus rest intervention for cancer patients to d = 4.5 for decrease in pain in community dwelling adults. Although the number of studies is limited, based on the size Cohen's d statistics calculated in this review, there is evidence to suggest that Reiki therapy may be effective for pain and anxiety. Continued research using Reiki therapy with larger sample sizes, consistently randomized groups, and standardized treatment protocols is recommended.

Health care needs of women immediately post-incarceration: a mixed methods study.

OBJECTIVE(S): This study examined the health status of women with a recent history of incarceration and explored if/how women were accessing health care resources at the time immediately following release. DESIGN AND SAMPLE: This mixed methods study utilized two phases: (1) a quantitative survey; and (2) qualitative interviewing. Thirty-four women (18 years of age and older, released from incarceration in the last 12 months) participated in the quantitative phase; 11 of those completed the qualitative interviews. MEASURES: In phase 1, data were collected on demographics, health history, health status, and health-promoting behaviors. In the second phase, semi-structured interviews were used. RESULTS: Women in the study reported below average health status compared with the general population. The major health issues identified by participants included specific health problems affected by incarceration, mental health needs, routine health promotion and maintenance, recovery from substance abuse as a major health concern, and social and environmental barriers to care. CONCLUSIONS: Women leaving jail or prison have significant and complex health care needs. This period of transition appears to be an opportune time to offer support, services, and other health-promoting interventions.

Trait Mindfulness and Mindfulness Practices in Adolescents with Type 1 Diabetes: Descriptive and Comparative Study.

INTRODUCTION: Study describes mindfulness (trait and practices) and compares levels of trait mindfulness (low/high) and practices (yes/no) on demographic, clinical characteristics, and diabetes-related outcomes among adolescents with type 1 diabetes (T1D). METHODS: Adolescents completed a survey on demographics, clinical data, trait mindfulness/practices, diabetes-specific stress, and diabetes self-management (DSM). Glycemic control (A1c) obtained from medical records. T and χ2 tests were applied for comparative analyses. RESULTS: 129 adolescents (12-18 years) reported moderately high levels of mindfulness (31 ± 8; range, 10-40). One-third (30%) reported having experience with mindfulness practices (formal, informal, and religious). Adolescents who reported higher levels of trait mindfulness had higher insulin pump usage (p =.005), less diabetes-specific stress (p <.001), greater DSM (p =.006), and less A1c (p =.013). Adolescents who reported more types of mindfulness practices had greater DSM scores. DISCUSSION: Adolescents with higher levels of trait mindfulness and with more types of mindfulness practices had better diabetes-related outcomes. Introducing mindfulness training tailored to adolescents with T1D should be examined.

Breastfeeding experiences of urban adolescent mothers.

This qualitative descriptive study examined the breastfeeding experiences of urban adolescent mothers using a combination of focus groups and semi-structured interviews. Analysis of verbatim interview text, field, and debriefing notes was undertaken to discover categories, themes and an emerging conceptual framework. Twenty-three teens, between the ages of 14 and 18, enrolled from two postpartum clinics described the process of teens' breastfeeding decision-making, initiation, continuation, and termination of breastfeeding. Roughly half of the teens were currently breastfeeding and the other half had weaned their infant within the last six months. Adolescent mothers chose breastfeeding mainly for infant health reasons, closeness and bonding. Positive and negative events; barriers and facilitators to continued breastfeeding; and types of support received during breastfeeding illuminated the experience starting in the hospital and extending over time. Among those who weaned, a combination of primary and secondary obstacles or problems, such as perceptions of insufficient milk supply, nipple/breast pain, time demands of school or work, problems with pumping, and feeling overwhelmed and frustrated led to weaning. Many who weaned did not seek out available help and ultimately many reported regret about weaning earlier than intended. Those who continued breastfeeding beyond six weeks reported significant emotional, informational and instrumental support from family, friends, school, and their babies. Implications for nursing practice and research are discussed.

Symptom Map of Endocrine Therapy for Breast Cancer: A Scoping Review.

BACKGROUND: Multiple symptoms associated with endocrine therapy have a detrimental impact on medication adherence and quality of life. OBJECTIVE: The purpose of this scoping review is to map the symptoms during endocrine therapy for breast cancer to provide implications for current practice and suggestions for future research. METHODS: The PubMed, CINAHL, and China Science Periodical Databases were searched to identify related studies published in English and Chinese languages. References of included articles were reviewed for additional eligible studies. Of the 2551 articles identified, 57 articles met inclusion criteria and were included in this scoping review. RESULTS: Evidence for the 16 most studied symptoms and 15 most prevalent symptoms were synthesized. Five key symptoms associated with endocrine therapy were identified, including joint/muscle pain, hot flashes, low sexual interest/desire, joint/muscle stiffness, and fatigue/lack of energy. Rarely studied but highly prevalent symptoms and other gaps in the symptom science during endocrine therapy for breast cancer were identified. CONCLUSION: Nurses caring for women receiving endocrine therapy for breast cancer should assess the 5 key symptoms identified. There remain substantial gaps in the science related to the symptom experience during endocrine therapy for breast cancer. Future studies should focus on the domains of symptom intensity and distress, specific understudied symptoms, symptom clusters, and development of symptom assessment instruments specific to symptoms associated with endocrine therapy. IMPLICATIONS FOR PRACTICE: This scoping review identified 5 well-studied and highly prevalent symptoms that should be assessed in women with breast cancer receiving endocrine therapy.

Teaching Patients with Advanced Cancer to Self-Advocate: Development and Acceptability of the Strong Together™ Serious Game.

OBJECTIVE: Serious games are a growing form of psychoeducation, although few studies have evaluated serious games for patients with advanced cancer. The purpose of this study was to develop and assess the initial acceptability of a serious game to teach women with advanced cancer self-advocacy skills, including communication, decision-making, and social connectivity, to improve their quality of life with cancer. MATERIALS AND METHODS: We conducted a multistage, user-centered codesign process to develop the content of the game that was consistent with our work on how patients self-advocate and patients' preferences for the game. First, we conducted an open pilot study of a mock paper version of the game by assessing patients' interest in the serious game. Second, we organized a diverse expert panel to develop the serious game with a company, Simcoach Games, using patient-centered design approaches with multiple rounds of patient feedback. Finally, we performed acceptability testing of the game by asking patients their perceptions of the game's appropriateness, realism, and entertainment. RESULTS: During the three stages of game development, patients reported that the serious game was appropriate, informative, useful, and relevant to their challenges as patients with cancer. Suggestions for improvement included tailoring the game to a patient's specific situation, providing the game early in treatment, and including caregivers and other patients in the game play. CONCLUSION: The Strong Together™ serious game demonstrates the potential to assist patients in advocating for their needs and priorities. Future work will use patient suggestions to improve the game before efficacy testing.

Menopausal women's perceived causes of hot flash.

This descriptive study examined the perceptions of a group of breast cancer survivors about the causes of their hot flashes. Thirty-nine participants readily offered 1,008 individual responses. A content analysis revealed four prominent categories (stress, pain, medication related, and lack of sleep) as well as others (e.g., food related, heat related). In the context of concerns about biomedical approaches to hot flash treatment (specifically hormone therapy [HT]), inconsistent data regarding nonhormonal treatment options, and the many psychosocial factors identified as related to the hot flash experience, the benefits of identifying and addressing women's perceptions in developing effective treatment plans are discussed.

Mindfulness-Based Interventions Among Adolescents With Chronic Diseases in Clinical Settings: A Systematic Review.

INTRODUCTION: We aimed to determine the benefits/efficacy of mindfulness-based interventions (MBIs) implemented among adolescents with chronic diseases in clinical settings. METHODS: An electronic search of PubMed, CINAHL, and PsycINFO databases was conducted in November 2017 to identify studies in which mindfulness was the primary intervention delivered for adolescents with chronic diseases to improve psychological and physical health. RESULTS: Nineteen eligible studies were included in this review. Fifteen studies included adolescents with psychiatric or pain disorders, and four included adolescents with a chronic physical disorders. Psychological outcomes and pain were examined in most studies with effect sizes for MBIs ranging from small to large. DISCUSSION: MBI studies conducted in clinical settings mainly engaged adolescents with psychiatric or pain disorders. The effectiveness of MBIs on improving psychological outcomes were inconsistent. Large randomized trials are needed to examine the effectiveness of MBIs and should expand to include adolescents with chronic physical diseases.

Symptom Burden and Self-Advocacy: Exploring the Relationship Among Female Cancer Survivors

BACKGROUND: Although patient self-advocacy is a critical component of patient-centered care, the association between symptom burden and self-advocacy has received little attention. 
. OBJECTIVES: This analysis evaluates the degree to which self-advocacy is associated with symptom burden among women with a history of cancer. 
. METHODS: Participants completed online or paper questionnaires. Descriptive statistics and ordinary least squares regression models were used to analyze the association between the three dimensions of self-advocacy and two dimensions of symptom burden. FINDINGS: Participants reported moderate levels of symptom burden. Fatigue, disturbed sleep, and memory problems were most common. Informed decision making was positively associated with symptom burden and participants' burden across the three most severe symptoms. Effective communication was negatively associated with total symptom burden and the degree to which symptoms interfered with daily life.

Memory impairments with adjuvant anastrozole versus tamoxifen in women with early-stage breast cancer.

OBJECTIVE: Hormones have been implicated as modulators of cognitive functioning. For instance, results of our previous work in women with breast cancer showed that cognitive impairment was more severe and involved more memory domains in those who received adjuvant tamoxifen therapy compared with women who received chemotherapy alone or no adjuvant therapy. Recently aromatase inhibitors such as anastrozole have been used in lieu of tamoxifen for the adjuvant treatment of postmenopausal women with hormone receptor-positive, early-stage breast cancer. Plasma estrogen levels are significantly lower in women who receive anastrozole compared with those who receive tamoxifen. We hypothesized, therefore, that anastrozole would have a more profound effect on cognitive function than tamoxifen, a mixed estrogen agonist/antagonist. DESIGN: To test this hypothesis we compared cognitive function in women with early-stage breast cancer who received tamoxifen with those who received anastrozole therapy in a cross-sectional study. We evaluated cognitive function, depression, anxiety, and fatigue in 31 postmenopausal women with early-stage breast cancer who were between the ages of 21 and 65 years and treated with tamoxifen or anastrozole for a minimum of 3 months. RESULTS: The results showed that women who received anastrozole had poorer verbal and visual learning and memory than women who received tamoxifen. CONCLUSIONS: Additional, prospective studies are needed to validate and confirm the changes in cognitive function associated with hormone therapy for breast cancer.

Effect of mindfulness meditation on short-term weight loss and eating behaviors in overweight and obese adults: A randomized controlled trial.

Background There is a significant health crisis with rates of obesity continuing to increase despite research and clinical standard behavioral weight loss programs (SBWP). Mindfulness meditation (MM), with demonstrated benefits on physical, psychological health, and self-regulation behaviors was explored with SBWP. Methods Forty-six adults (BMI=32.5±3.7 kg/m2; age=45.2±8.2 years, 87 % female, 21.7 % African American) were randomly assigned to a 6-month SBWP only (n=24) or SBWP+MM (n=22) at a university-based physical activity and weight management research center in a northeastern US city. Participants were instructed to decrease intake (1200-1500 kcal/day), increase physical activity (300 min/wk), and attend weekly SBWP or SBWP+MM sessions. SBWP+MM had the same SBWP lessons with addition of focused MM training. Outcome measures collected at 0, 3, and 6 months included: weight, Block Food Frequency Questionnaire, Eating Behavior Inventory, Eating Inventory and Paffenbarger Physical Activity Questionnaire. Data were analyzed using linear mixed modeling for efficacy analysis of weight (primary) and eating, exercise and mindfulness (secondary outcomes). Results Retention rate was 76.1 % (n=35). A significant group by time interaction (p=0.03) was found for weight, with weight loss favoring SBWP+MM (-6.9 kg+2.9) over SBWP (-4.1 kg+2.8). Eating behaviors (p=0.02) and dietary restraint (p=0.02) improved significantly in SBWP+MM, compared to SBWP. MM enhanced weight loss by 2.8 kg potentially through greater improvements in eating behaviors and dietary restraint. Conclusions These findings support further study into the use of MM strategies with overweight and obese adults. The use of this low-cost, portable strategy with standard behavioral interventions could improve weight management outcomes.

Reiki Therapy for Symptom Management in Children Receiving Palliative Care: A Pilot Study.

BACKGROUND: Pain may be reported in one-half to three-fourths of children with cancer and other terminal conditions and anxiety in about one-third of them. Pharmacologic methods do not always give satisfactory symptom relief. Complementary therapies such as Reiki may help children manage symptoms. OBJECTIVE: This pre-post mixed-methods single group pilot study examined feasibility, acceptability, and the outcomes of pain, anxiety, and relaxation using Reiki therapy with children receiving palliative care. METHODS: A convenience sample of children ages 7 to 16 and their parents were recruited from a palliative care service. Two 24-minute Reiki sessions were completed at the children's home. Paired t tests or Wilcoxon signed-rank tests were calculated to compare change from pre to post for outcome variables. Significance was set at P < .10. Cohen d effect sizes were calculated. RESULTS: The final sample included 8 verbal and 8 nonverbal children, 16 mothers, and 1 nurse. All mean scores for outcome variables decreased from pre- to posttreatment for both sessions. Significant decreases for pain for treatment 1 in nonverbal children ( P = .063) and for respiratory rate for treatment 2 in verbal children ( P = .009). Cohen d effect sizes were medium to large for most outcome measures. DISCUSSION: Decreased mean scores for outcome measures indicate that Reiki therapy did decrease pain, anxiety, heart, and respiratory rates, but small sample size deterred statistical significance. This preliminary work suggests that complementary methods of treatment such as Reiki may be beneficial to support traditional methods to manage pain and anxiety in children receiving palliative care.

Pediatric Palliative Care: A Five-Year Retrospective Chart Review Study.

BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013. MEASUREMENTS: The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral. RESULTS: The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ2 = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis. DISCUSSION: Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.