Measuring Pediatric Palliative Care Quality: Challenges and Opportunities

Boyden, Jackelyn Y.; Bogetz, Jori F.; Johnston, Emily E.; Thienprayoon, Rachel; Williams, Conrad; McNeil, Michael J.; Patneaude, Arika; Widger, Kimberley; Rosenberg, Abby R.; Ananth, Prasanna

doi:10.1016/j.jpainsymman.2023.01.021

Cited by 4 publications

(4 citation statements)

References 117 publications

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“…Although objective measurement of the treatment effectiveness and quality of PPC services is considered a priority, only a few tools with this aim are currently available. Indeed, defining appropriate measures for PPC outcomes is challenging because of the heterogeneity of the child’s disease and conditions [ 3 , 41 , 42 , 43 ].…”

Section: Care Assessment Toolsmentioning

confidence: 99%

“…QoL is a proxy for the effectiveness of PPC services [ 2 , 43 ]. A systematic review published in 2016 discussed health-related QoL outcome measures with potential use in PPC ( Table 5 ) [ 51 ].…”

Section: Care Assessment Toolsmentioning

confidence: 99%

“…A score of ≥15 indicates that referral to PPC is needed Yes ACCAPED Scale [8,9] It assesses the clinical needs of a child with a life-limiting or life-threatening illness It investigates 10 domains of PPC needs. The child is referred to community care in the case of low-complexity needs (score ≤ 29), to general PPC service in the case of medium-complexity needs (score [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49], or to a specialized PPC service when high-complexity needs are present (score ≥ 50)…”

Section: Eligibility Toolsmentioning

confidence: 99%

“…The final score is obtained from each domain, and the 'surprise question' scores guide the HCPs in determining the most appropriate PPC dimension for the patient. The child is referred to community care in the case of low-complexity needs (score ≤ 29), to the general PPC service in the case of medium-complexity needs (score [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49], or to a specialized PPC service when high-complexity needs are involved (score ≥ 50). Furthermore, the 'surprise question' is considered effective for early referral to a specialist PC as a prognostic tool.…”

Section: Accaped Scalementioning

confidence: 99%

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Pediatric Palliative Care: Insights into Assessment Tools and Review Instruments

Papa,

Mercante,

Giacomelli

et al. 2023

Children

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The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient’s best interest,PPC healthcare providers should start using available tools, regardless of their validation status.

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