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Context Little is known about advance care planning (ACP) and palliative care needs among adults with congenital heart disease (ACHD). Objectives The objective of this study was to identify and synthesize studies concerning palliative care among ACHD patients. Methods We searched five electronic databases (PubMed, Embase, SCOPUS, Web of Science, and CINAHL) using the keywords palliative care and congenital heart disease. Inclusion criteria were adults (age > 18 years) with congenital heart disease and publications in English through March 3, 2019. Results Our search yielded 2872 studies, and after removal of duplicates, we screened 2319 abstracts and identified seven for inclusion. Study findings were grouped into three domains: ACP, symptomatology, and end-of-life care. Among the five cross-sectional studies, only 1%–28% of ACHD patients recalled participating in ACP discussions with their doctors but 69%–78% reported a strong interest and desire to participate in ACP. In one study, 46% (n = 67) of patients had elevated anxiety symptoms (Hospital Anxiety and Depression Scale [HADS-A] ≥ 8) and 11% (n = 15) had elevated depressive symptoms (HADS-A ≥ 8). ACHD patients who had a documented goals of care conversation before cardiac decompensation had a lower incidence of resuscitation and aggressive treatments at end of life (12% [n = 3] vs. 100% [n = 12], P Conclusion While few ACHD patients complete advance directives, our findings support that many ACHD patients recognize the value of initiating end-of-life and goals of care conversations early on in the course of illness. Future studies investigating communication and implementation strategies of ACP as well as the symptom experience of patients with ACHD are needed.

Context Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown. Objective We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains. Methods We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization. Results We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication. Conclusion SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.

Current chronic pain management recommendations emphasize leveraging interdisciplinary care models, which rely on communication, coordination, and collaboration among multiple providers. We aimed to identify key features of interdisciplinary teamwork and teaming processes that facilitate improved pain outcomes for patients experiencing chronic pain in primary care settings. We searched PubMed, EMBASE, CINAHL, and the Cochrane Library for English language, randomized studies published after 2009. Included studies had to report patient-reported pain outcomes (i.e. BPI total pain), include primary care as an intervention setting, and involve interactions between at least two providers and the patient over time. We assessed study quality with the Cochrane Risk of Bias tool. We qualitatively synthesized findings on intervention characteristics related to teamwork and teaming processes and patient pain outcomes. PROSPERO Registration: CRD42020191467. We included 13 randomized studies with 14 total interventions in our review, of which 7 reported one or more significantly improved pain outcome compared to controls over 6 to 12 months of observation. Most studies involved multiple primary care practices in the USA or Canada. Five studies were evaluated either within the Indianapolis Veterans Affairs Medical Center (VAMC) or the Portland VAMC. Other studies took place in primary care centers in Spain, Finland, the UK, and the Netherlands. Interventions with positive pain outcomes often described regularly scheduled patient contact, but there were few identified similarities about the communication, coordination, and collaboration processes among clinical intervention members. Care management and patient follow-up schedules were identified as key characteristics of teamwork or teaming in the interventions associated with improved pain outcomes. Despite widespread emphasis on interdisciplinary teams for pain management, high quality evidence about relevant team structures and teamwork and teaming processes remains limited. Care management and patient follow-up characterized primary care-based interventions involving teaming associated with improved pain outcomes.

Context Patients with significant burn injuries likely have palliative care needs. Objectives We performed a systematic review of existing evidence concerning the palliative care needs of burn patients. Methods Through November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains. Results Our searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains—processes of care, psychologic symptoms, social aspects, and end of life—were addressed by studies but three domains—spiritual, cultural, or ethics—were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments. Conclusion Most existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.

Context Individuals with cystic fibrosis (CF) frequently survive into adulthood, and many have multifaceted symptoms that impair quality of life. Objective We conducted a systematic review to investigate opportunities to improve utilization of palliative care among adults with CF. Methods We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until September 27, 2018, and reviewed references manually. Eligible articles were published in English, involved adults aged 18 years and older with CF, and contained original data regarding patient outcomes related to presence of advance care planning (ACP), symptom experience, and preferred and/or received end-of-life (EOL) care. Results We screened 652 article abstracts and 32 full-text articles; 12 studies met inclusion criteria. All studies were published between 2000 and 2018. Pertinent findings include that although 43% to 65% of adults with CF had contemplated completing ACP, the majority only completed ACP during their terminal hospital admission. Patients also reported high prevalence of untreated symptoms, with adequate symptom control reported in 45% among those with dyspnea, 22% among those with pain, and 51% among those with anxiety and/or depression. Prevalence of in-hospital death ranged from 62% to 100%, with a third dying in the intensive care unit. The majority received antibiotics and preventative treatments during their terminal hospitalization. Finally, treatment from a palliative care specialist was associated with a higher prevalence of patient completion of advanced directives, decreased likelihood of death in intensive care unit, and decreased use of mechanical ventilation at EOL. Conclusion Adults with CF often have untreated symptoms, and many opportunities exist for palliative care specialists to improve ACP completion and quality of EOL care.