ABSTRACT
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.
Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Terminal Care , Child , Humans , Neoplasms/therapy , Palliative Care , Quality of LifeABSTRACT
CONTEXT: The current upsurge in telehealth use in palliative and hospice care warrants consideration of patient, family caregiver, and interdisciplinary palliative perspectives on telehealth modality and communication experiences. Currently, telehealth experiences and encounters are being described but not yet extensively evaluated by palliative care teams. OBJECTIVES: To locate survey instruments available to assess telehealth interactions, to determine the content and constructs covered by the available instruments, and to describe the patient populations previously surveyed by the existing instruments. METHODS: This study and its reporting followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines with the protocol registered in The International Prospective Register of Systematic Reviews. Three databases were searched with over 3100 articles analyzed for use of a telehealth survey instrument. RESULTS: Twelve telehealth communication assessment instruments were identified with a mean length of 20 questions, primarily Likert-scale responses with one inclusive of free text and one qualitative inquiry survey. Three inquired only into modality, four queried communication, and five studied both modality and communication experience. Existing telehealth survey instruments are unidirectional in exploring patient or family experience, with two inclusive of provider perspectives. Participant demographics are notably underreported in telehealth experience studies with a frank lack of diversity in ethnic/racial, geographic, age, educational, and income representativeness in current telehealth survey instrument respondents. CONCLUSION: Palliative care teams may consider familiarity with telehealth survey instrument as an essential component to progress from description of telehealth use to evaluation of telehealth encounters. Current survey instrument outcome reports do not represent inclusivity or diversity, although telehealth is now being clinically applied across settings.
