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BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State-Trait Anxiety Inventory-State and the 10-item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. RESULTS: Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non-White race, Spanish-speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid-only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7-14.7]) and depression (MD, 4.1 [95% CI, 1.7-6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8-18.5]; depression: MD, 4.9 [95% CI, 1.3-8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2-18.9]; depression: MD, 4.8 [95% CI, 1.8-7.8]). CONCLUSIONS: HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. PLAIN LANGUAGE SUMMARY: In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.
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OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.
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Ácidos Cicloexanocarboxílicos , Neuralgia , Humanos , Criança , Lactente , Pré-Escolar , Adolescente , Gabapentina/uso terapêutico , Analgésicos , Cuidados Paliativos , Estudos Prospectivos , Aminas/uso terapêutico , Aminas/efeitos adversos , Ácido gama-Aminobutírico/uso terapêutico , Ácido gama-Aminobutírico/efeitos adversos , Ácidos Cicloexanocarboxílicos/uso terapêutico , Ácidos Cicloexanocarboxílicos/efeitos adversos , Neuralgia/induzido quimicamenteRESUMO
CONTEXT: Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage. OBJECTIVES: This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL. METHODS: We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here. RESULTS: Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion. CONCLUSION: Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.
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Neoplasias , Qualidade de Vida , Criança , Humanos , Neoplasias/terapia , Cuidados Paliativos , Medidas de Resultados Relatados pelo Paciente , PaisRESUMO
The Day100 Talk (Day100) bridges communication gaps between parents and clinicians early in pediatric cancer care through an interprofessional family conference facilitated by structured tools. We aimed to understand communication challenges and facilitators and to adapt Day100 for Spanish-speaking parents. We interviewed Spanish-speaking parents with limited English proficiency, Spanish-English medical interpreters, and clinicians to gather communication experiences and adapt Day100. Results showed that communication difficulties were precipitated by linguistic and cultural differences, nonvisual technologies, and limited spontaneous communication. Interpreters enhanced communication as linguistic and cultural brokers. Nonverbal cues also facilitated communication. Participants offered recommendations to adapt Day100 for future study.
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Idioma , Neoplasias , Criança , Humanos , Comunicação , Barreiras de Comunicação , Neoplasias/terapia , PaisRESUMO
BACKGROUND: The Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) intervention aims to integrate specialized pediatric palliative care into the routine care of children, adolescents, and young adults (AYAs) with advanced cancer. AIMS: To evaluate whether PQ-Response, compared to usual care, improves patient's health related quality of life (HRQoL) and symptom burden (aim 1), parent psychological distress and symptom-related stress (aim 2), and family and symptom treatment activation (aim 3). DESIGN: Multisite, randomized (1:1), controlled, un-blinded, effectiveness trial comparing PediQUEST Response (intervention) vs usual cancer care (control). SETTING: Five US large, tertiary level pediatric cancer centers. PARTICIPANTS: Children (≥2 years old)/AYAs who receive care at any of the participating sites because of advanced cancer or any progressive/recurrent solid or brain tumor and are palliative care "naïve." Target: 200 enrolled patient-parent dyads (minimum goal: 136 dyads randomized, N = 68/arm). INTERVENTIONS: PediQUEST Response: combines patient-mediated activation (weekly feedback of patient- and parent-reported symptoms and HRQoL to families and providers using the PediQUEST web system) with integration of the palliative care team. Usual Cancer Care: participants receive usual care, which can include palliative care consultation, and use PediQUEST web to answer surveys, with no feedback. METHODS: Following enrollment, patients (if ≥5 years) and one parent receive weekly PediQUEST-Surveys assessing HRQoL (Pediatric Quality of Life Inventory 4.0) and symptom burden (PediQUEST-Memorial Symptom Assessment Scale). After a 2-week run-in period, dyads who answer ≥2 PediQUEST surveys per participant (responders), are randomized (concealed allocation) and followed up for 16-weeks. Parents answer six additional surveys (parent outcomes). OUTCOMES: Primary: mean patient HRQoL score over 16-weeks as reported by a) the parent; and b) the patient if ≥5 years-old. Secondary: patient's symptom burden; parent's anxiety, depressive symptoms, symptom-related stress; family activation; and symptom treatment activation. TRIAL REGISTRATION: ClinicalTrials.gov (NCT03408314) 1/24/18. https://clinicaltrials.gov/ct2/show/NCT03408314.
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Neoplasias Encefálicas , Neoplasias , Adolescente , Adulto Jovem , Humanos , Criança , Pré-Escolar , Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Neoplasias/patologia , Inquéritos e Questionários , Oncologia , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
CONTEXT: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. OBJECTIVES: To identify barriers to effective symptom management in pediatric advanced cancer. METHODS: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. RESULTS: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. CONCLUSION: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress.
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Neoplasias , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pais , Inquéritos e QuestionáriosRESUMO
CONTEXT: Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. OBJECTIVE: We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. METHODS: In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. RESULTS: We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. CONCLUSION: Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.