Meaning-centered pain coping skills training for patients with metastatic cancer: Results of a randomized controlled pilot trial.

OBJECTIVE: For patients with advanced cancer, pain is a common and debilitating symptom that can negatively impact physical, emotional, and spiritual well-being. This trial examined the feasibility and initial effects of Meaning-Centered Pain Coping Skills Training (MCPC), a cognitive-behavioral pain management intervention with an emphasis on enhancing meaning (i.e., a personal sense of purpose, worth, and significance) and peace. METHODS: We enrolled 60 adults with stage IV solid tumor cancers and moderate-severe pain between February 2021 and February 2022. Participants were randomized 1:1 to MCPC + usual care or usual care alone. Meaning-Centered Pain Coping Skills Training consisted of four weekly 60-min individual sessions via videoconference or telephone, delivered by a trained therapist using a manualized protocol. Participants completed validated measures of pain severity, pain interference, pain self-efficacy, spiritual well-being (i.e., meaning, peace, and faith), and psychological distress at baseline and 5-week and 10-week follow-ups. RESULTS: All feasibility metrics exceeded prespecified benchmarks. Fifty-eight percent of screened patients were eligible, and 69% of eligible patients consented. Of those assigned to MCPC, 93% completed all sessions and 100% of those who completed follow-ups reported using coping skills weekly. Retention was strong at 5-week (85%) and 10-week (78%) follow-ups. Meaning-Centered Pain Coping Skills Training participants reported better scores than control participants across outcome measures, including moderate-to-large sized differences at 10-week follow-up in pain severity (Cohen's d = -0.75 [95% confidence interval: -1.36, -0.14]), pain interference (d = -0.82 [-1.45, -0.20]), and pain self-efficacy (d = 0.74 [0.13, 1.35]). CONCLUSIONS: MCPC is a highly feasible, engaging, and promising approach for improving pain management in advanced cancer. Future efficacy testing is warranted. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04431830, registered 16 June 2020.

The Mental and Physical Health of Mothers of Children with Special Health Care Needs in the United States.

OBJECTIVE: To determine the prevalence of poor mental and physical health among mothers of children with special health care needs (CSHCN) and to determine the association between maternal health and the child's number of special health care needs (SHCN) and severity of ability limitation. METHODS: We used the combined 2016-2018 National Survey of Children's Health Dataset of 102,341 children ages 0-17 including 23,280 CSHCN. We used regression models to examine the associations of a child's number of SHCN and ability limitations with maternal health. RESULTS: Twice as many mothers of CSHCN had poor mental and physical health compared to non-CSHCN (mental 10.3% vs. 4.0%, p < .001; physical 11.9% vs 5.0%, p < .001). In regression models, increased number of SHCN and severity of activity limitations were associated with significantly increased odds of poor maternal health. CONCLUSIONS FOR PRACTICE: Mothers of CSHCN have worse health compared to mothers of non-CSHCN, especially those who experience social disadvantage and those with children with complex SHCN or severe ability limitations. Interventions to improve the health of these particularly vulnerable caregivers of CSHCN are warranted.

Palliative care use amongst patients with bladder cancer.

OBJECTIVES: To describe the rate and determinants of palliative care use amongst Medicare beneficiaries with bladder cancer and encourage a national dialogue on improving coordinated urological, oncological, and palliative care in patients with genitourinary malignancies. PATIENTS AND METHODS: Using Surveillance, Epidemiology, and End Results-Medicare data, we identified patients diagnosed with muscle-invasive bladder cancer (MIBC) between 2008 and 2013. Our primary outcome was receipt of palliative care, defined as the presence of a claim submitted by a Hospice and Palliative Medicine subspecialist. We examined determinants of palliative care use using logistic regression analysis. RESULTS: Over the study period, 7303 patients were diagnosed with MIBC and 262 (3.6%) received palliative care. Of 2185 patients with advanced bladder cancer, defined as either T4, N+ , or M+ disease, 90 (4.1%) received palliative care. Most patients that received palliative care (>80%, >210/262) did so within 24 months of diagnosis. On multivariable analysis, patients receiving palliative care were more likely to be younger, female, have greater comorbidity, live in the central USA, and have undergone radical cystectomy as opposed to a bladder-sparing approach. The adjusted probability of receiving palliative care did not significantly change over time. CONCLUSIONS: Palliative care provides a host of benefits for patients with cancer, including improved spirituality, decrease in disease-specific symptoms, and better functional status. However, despite strong evidence for incorporating palliative care into standard oncological care, use in patients with bladder cancer is low at 4%. This study provides a conservative baseline estimate of current palliative care use and should serve as a foundation to further investigate physician-, patient-, and system-level barriers to this care.

Self-Reported Well-Being of Family Caregivers of Children with Medical Complexity.

OBJECTIVE: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.

Meaning-centered pain coping skills training for patients with metastatic cancer: Protocol for a randomized controlled efficacy trial.

BACKGROUND: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e.g., loss of meaning, peace), which can influence the pain experience for those facing life-threatening illness. To address these needs, we systematically developed and pilot tested a novel psychosocial intervention called Meaning-Centered Pain Coping Skills Training (MCPC). In this randomized controlled trial, we aim to determine MCPC's efficacy for reducing pain interference (primary outcome) and improving secondary outcomes. We will also estimate MCPC's cost-effectiveness. METHOD/DESIGN: Patients (target N = 210) with advanced solid tumor malignancies (Stage IV) and clinically-elevated pain interference will be enrolled and block randomized with equal allocation to MCPC + enhanced usual care or enhanced usual care alone. MCPC's four, videoconferenced, 45-60 min weekly sessions will be individually delivered by trained study therapists. Primary (pain interference) and secondary (pain severity, anxiety and depressive symptoms, pain self-efficacy, social support, spiritual well-being) patient-reported outcomes will be assessed at baseline, and 8-weeks (primary endpoint) and 12-weeks after baseline. CONCLUSION: Our MCPC intervention is the first to systematically address the biopsychosocial-spiritual aspects of pain in patients with advanced cancer. If MCPC demonstrates efficacy, next steps will involve hybrid efficacy-effectiveness and implementation work to broaden access to this brief, manualized, remotely-delivered intervention, with the goal of reducing suffering in patients with life-threatening illness.

Prevalence and Characteristics of Providers' Care Coordination Communication With Schools.

OBJECTIVES: Care coordination between schools and medical providers promotes child health, particularly for children with physical, emotional, and behavioral challenges. The purpose of this study was to assess caregivers' reports of provider-school communication for their children. Further, the study assessed if communication rates varied by child demographic or health conditions. METHODS: This study was a cross-sectional analysis of the 2016-2017 National Survey of Children's Health focused on school-aged children (age 6-17 years; n = 18,160). Weighted frequencies overall and stratified by provider-school communication status are reported. Multivariable logistic regression examined associations of provider-school communication. RESULTS: Only 23.5% of the total sample reported provider-school communication. The highest caregiver-reported communication prevalence was for children with diabetes (68.0%). Behavioral/mental health conditions, chronic physical health conditions or having increased medical complexity and needs were significantly associated with increased communication compared to those without these conditions. Odds Ratio (OR) and 95% Confidence Intervals (CI) for children with a behavioral/mental health condition were OR: 1.28; CI: 1.02 to 1.61, for children with a chronic physical health condition were OR: 1.37; CI: 1.15 to 1.63 and for children with special health care needs or with medical complexity were OR: 2.15; CI: 1.75 to 2.64 and OR: 1.77; CI: 1.09 to 2.87, respectively. Significant communication differences existed for every health condition (P < 0.05) except for children who had a blood disorder (P = 0.365). CONCLUSIONS: Caregiver perception of provider-school communication is low and differences in reported rates existed between health conditions and complexity status. Further work is needed to support provider-school-family communication for children with physical, mental, behavioral, and complex health conditions.

A National Profile of Families and Caregivers of Children With Disabilities and/or Medical Complexity.

OBJECTIVE: Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level. METHODS: We performed a secondary analysis of the 2016-2019 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children with no special health care needs (non-CSHCN), children with special health care needs (CSHCN), CSHCN with significant disabilities (CSHCN-SD), and children with medical complexity (CMC). Outcomes included survey items assessing 1) caregiver emotional well-being, 2) family functioning, and 3) economic adversity. We conducted multivariable logistic regression analyses to examine associations between child disability and medical complexity status with study outcomes. RESULTS: Among 131,774 survey responses, CSHCN-SD (weighted n = 4.2 million) and CMC (n =1.1 million) disproportionately reported adverse outcomes for every measure of well-being. Notably, caregivers of CSHCN-SD and CMC were more likely to report frequently feeling bothered (aOR 5.0 and 6.3, respectively) and angry (aOR 3.0 and 3.1) with their child than non-CSHCN caregivers. Families of CSHCN-SD and CMC had 40% lower odds of endorsing all aspects of family resilience and more likely to report three or more adverse childhood experiences (aOR 3.3 and 3.7) than non-CSHCN families. CSHCN-SD and CMC families were also more likely to experience difficulty covering basics (aOR, 2.6 and 3.3) and report caregivers changing jobs due to their child's care (aOR, 3.1 and 5.0). CONCLUSIONS: Development and testing of interventions specifically targeting the well-being of CSHCN-SD and CMC families and caregivers is needed.

A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.

OBJECTIVE: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center. METHODS: We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. RESULTS: We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. CONCLUSIONS: Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.

Identifying Children With Medical Complexity From the National Survey of Children's Health Combined 2016-17 Data Set.

OBJECTIVES: To develop a method of identifying children with medical complexity (CMC) from the National Survey of Children's Health (NSCH) 2016-2017 combined data set, to compare this approach to existing CMC identification strategies, and to describe sociodemographic characteristics of our CMC sample. METHODS: Using survey items pertinent to the medical complexity domains in the style by Cohen et al (chronic health conditions, health service needs, health care use, and functional limitations), we created a schema to categorize children as CMC by applying a 95th percentile cutoff for survey item positivity. We applied existing CMC identification techniques to the NSCH. We used 2-proportion z tests to compare the classification output of our CMC identification method to those of existing approaches. We used χ2 analyses to examine relationships between child and family characteristics, comparing CMC with children with special health care needs (CSHCN) and children with no special health care needs. RESULTS: Among the 71 811 children in the sample, 1.5% were classified as CMC by our method, representing almost 1.2 million children (weighted) in the United States in 2016-2017. CSHCN and children with no special health care needs represented 17.2% (weighted n = 12.6 million) and 81.2% (weighted n = 59.6 million) of the sample, respectively. Our approach classified a significantly smaller number of CSHCN as CMC than existing CMC identification methods, which classified 3.9% to 13.2% of the 2016-2017 NSCH sample as more complex (P < .001). CMC status was significantly associated with male sex, minority race or ethnicity, and experiencing socioeconomic adversity (all P < .001). CONCLUSIONS: This method enables standardized identification of CMC from NSCH data sets, thus allowing for an examination of CMC health outcomes, pertinent to pediatric hospitalist medicine, contained in the survey.

Most Children With Medical Complexity Do Not Receive Care in Well-Functioning Health Care Systems.

OBJECTIVES: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. PATIENTS AND METHODS: Secondary analysis of children in the National Survey of Children's Health combined 2016-2017 data set who received care in well-functioning health systems. Secondary outcomes included this measure's component indicators. The χ2 analyses were used to examine associations between child and family characteristics and the primary outcome. Adjusted multivariable logistic regression was used to examine relationships between medical complexity status and primary and secondary outcomes. Using these regression models, we examined the interaction between medical complexity status and household income. RESULTS: CMC accounted for 1.6% of the weighted sample (n = 1.2 million children). Few CMC (7.6%) received care in a well-functioning health care system. CMC were significantly less likely than children with special health care needs (CSHCN) (odds ratio, 0.3) of meeting criteria for this primary outcome. Attainment rates for secondary outcomes (families feeling like partners in care; receives care within a medical home; received needed health care) were significantly lower among CMC than CSHCN. Family income was significantly associated with likelihood of meeting criteria for primary and secondary outcomes; however, the relationships between medical complexity status and our outcomes did not differ by income level. CONCLUSIONS: CMC are less likely than other CSHCN to report receiving care in well-functioning health care systems at all income levels. Further efforts are necessary to better adapt current health care systems to meet the unique needs of CMC.

A National Mental Health Profile of Parents of Children With Medical Complexity.

OBJECTIVES: The mental health of parents of children with medical complexity (CMC) is poorly understood, yet it drives child and family health outcomes. For parents of CMC, compared with parents of noncomplex children with special health care needs (CSHCN) and children without special health care needs (non-CSHCN), we examined self-reported mental health, knowledge of community sources for help, and emotional support. METHODS: Using parent-reported data from the combined 2016-2017 National Survey of Children's Health, we divided the population into 3 groups: households with CMC, noncomplex CSHCN, and non-CSHCN. We compared these groups regarding the following: (1) parents' risks for poor or fair mental health and knowledge of where to go for community help and (2) parent-reported sources of emotional support. RESULTS: Of 63 955 588 parent-child dyads (weighted from a sample of 65 204), parents of CMC had greater adjusted odds of reporting poor or fair mental health compared with parents of noncomplex CSHCN (adjusted odds ratio [aOR] 2.0; 95% confidence interval [CI] 1.1-3.8) and non-CSHCN (aOR 4.6; 95% CI 2.5-8.6). Parents of CMC had greater odds of not knowing where to find community help compared with parents of noncomplex CSHCN (aOR 2.1; 95% CI 1.4-3.1) and non-CSHCN (aOR 2.9; 95% CI 2.0-4.3). However, parents of CMC were most likely to report receiving emotional support from health care providers and advocacy groups (P < .001). CONCLUSIONS: Among all parents, those with CMC were at the highest risk to report suboptimal mental health. They more often reported that they do not know where to find community help, but they did say that they receive emotional support from health care providers and advocacy groups. Future researchers should identify ways to directly support the emotional wellness of parents of CMC.

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.

OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. RESULTS: In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93). CONCLUSIONS: CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

Pediatric palliative care in the medical neighborhood for children with medical complexity.

Children with medical complexity (CMC) are a medically fragile pediatric population that experience severe chronic illnesses resulting in significant health care needs, functional limitations, and health care utilization, and are at the highest risk for morbidity and mortality among all children. Furthermore, families and parents of CMC experience significant caregiver hardships and diminished quality of life. The field of pediatric palliative care has grown in recent years, in part to address the physical and psychosocial issues inherent to the care of these chronically ill children. However, as the prevalence and long-term survival of CMC increases with medical advancements, the demand for pediatric palliative care will likely exceed the capacity of current and future pediatric palliative care specialists. Therefore, alternative strategies to ensure access to essential aspects of palliative care must be considered. This article focuses on why and how high-quality palliative care should be integrated into the patient- and family-centered medical home, the ideal care delivery model for CMC and their families. We first discuss how palliative care principles naturally align with and complement the goals of the CMC medical home. Next, we detail what actions pediatric palliative care specialists can take to best support the CMC medical home as "medical neighbors." Lastly, we describe the fundamental aspects of pediatric palliative care that all clinicians caring for CMC should be able to provide, referred to as "primary pediatric palliative care." (PsycINFO Database Record (c) 2019 APA, all rights reserved).

System-Level Factors Associated With Use of Outpatient Specialty Palliative Care Among Patients With Advanced Cancer.

PURPOSE: The proportion of patients with advanced cancer who receive outpatient specialty palliative care (OSPC) is as low as 2.0%. Improved understanding of the system-level factors influencing use of OSPC could inform adaptations to the delivery of palliative care to maximize access. We examined associations between OSPC use among patients with advanced solid tumors and oncology-OSPC clinic colocation and patient travel time to an OSPC clinic. PATIENTS AND METHODS: We conducted a retrospective cohort study of patients with advanced solid tumors receiving oncologic treatment between January 1 and December 31, 2016, within a comprehensive cancer center network with well-established, oncology-specific OSPC clinics. Multivariable logistic regression analysis was used to evaluate the associations of clinic colocation and geographic access with OSPC use. RESULTS: Of 9,485 patients with advanced solid tumors, 478 (5.0%) received OSPC services in 2016. After controlling for age, sex, marital status, cancer type, insurance, treatment intent, and illness severity, patients whose oncologist practices were colocated with OSPC clinics were more likely to use OSPC (odds ratio [OR], 19.2; 95% CI, 14.1 to 26.2). Compared with patients who lived > 90 minutes from an OSPC clinic, patients with travel times of < 30 minutes (OR, 3.2; 95% CI, 2.2 to 4.6) and 31 to 60 minutes (OR, 2.4; 95% CI, 1.6 to 3.6) were also more likely to use OSPC. CONCLUSION: Among patients with advanced solid tumors, colocation of oncology and OSPC clinics and shorter patient travel time were associated with greater odds of using OSPC. Future efforts to increase OSPC use in this population should consider clinic colocation and travel burden.