A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care


A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care


Bemis H; Ritter MD; Klein M; Lotstein D


Journal of Pain and Symptom Management




child; diagnosis; adult; Caucasian; controlled study; female; human; major clinical study; male; palliative therapy; practice guideline; parent; pilot study; distress syndrome; screening; patient referral; self report; treatment outcome; caregiver; conference abstract; decision making; preliminary data; anxiety; Hispanic; patient triage; Spaniard; supportive care need


Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically meaningful comparison to population norms. 2. Participants will self-report the ability to utilize a standard psychological screening approach to integrate data-driven assessment of parent supportive care needs and outcomes into research and clinical programs. Introduction: Ambulatory pediatric palliative care (PPC) is a limited resource for families of children with serious illness. Typically, providers rely on clinical judgment to identify need for ambulatory PPC and/or community-based palliative care (CBPC), and to assess the impact of these services. Data from psychological screening trajectories may improve assessment and resource matching to meet families' needs. Objective(s): To elucidate trajectories of anxiety among caregivers referred to PPC and explore associations with referrals for CBPC. Method(s): Seventeen parents of children (1.5-18 y.o.) newly referred to ambulatory PPC self-reported anxiety symptoms using the validated PROMIS Anxiety short-form as part of a hospital-and-CBPC coordination trial. Parents completed surveys at time of referral (T0), 3 months later (prior to first PPC visit,T1), and 6 months after the start of PPC services (T2). T-scores were calculated for each time point (M= 50, SD= 10); 0.5 SD is a clinically meaningful change per PROMIS guidelines. Result(s): Eleven parents completed anxiety screening at all timepoints (91% female; 64% white; 64% Hispanic/Latinx; 18% Spanish-speaking). At T0, 4/11 (36.3%) demonstrated mild-moderately elevated anxiety (T-score >55; 18.1% >60; "elevated" group). Seven parents' scores (7/11, 63.6%) were "non-elevated", with T-scores under 55. Over the control period (T0-T1), both groups had minimal change (Mchange < 5). From T1-T2, the elevated group Mchange was -6.85; the non-elevated group had minimal change (+0.04). Eighty percent (4/5) of participants with T-scores >55 at T1 were referred by PPC for CBPC support, versus 5/9 (55%) of those with T-scores <55. Conclusion(s): This study presents a novel method of tracking caregiver anxiety in PPC. Preliminary results in this small, diverse sample suggest anxiety screening may identify those most likely to benefit from PPC and from additional CBPC support. Future study is warranted to inform data-driven decisions for triaging, resourcing, and measuring the impact of PPC. Keywords: Patient Outcomes / Managing Suffering and DistressCopyright © 2024


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Bemis H; Ritter MD; Klein M; Lotstein D, “A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care,” Pediatric Palliative Care Library, accessed July 18, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19601.