Health-Related Quality-of-Life Outcome Measures for Pediatric Palliative Care Populations: A Systematic Review

Background: A key goal of palliative care is to improve the quality of life for patients and families living with serious illness. However, valid, and reliable instruments are lacking to assess health-related quality of life (HRQOL) in pediatric palliative care. The objective of this systematic literature review is to update the previous review conducted by Coombes et al. and to explore recent literature and to summarize the measurement properties of identified patient- and parent-reported HRQOL outcome measures for pediatric palliative care appropriate patients. Methods: A systematic review of the literature was conducted by searching EMBASE, Medline, and PsychInfo for recent assessment instruments that measure HRQOL in a life-limiting or life-threatening illness. The psychometric properties of identified measures were evaluated and summarized using COnsensus based Standards for the selection of health Measurement INstruments (COSMIN) guidelines. Results: After removing duplicates, 1,401 records were screened of which 19 manuscripts of 18 studies were retained that supplied information about 12 HRQOL measures. Measurement quality varied across studies. Internal consistency and hypothesis testing for construct validity were most commonly assessed. Most instruments lacked information on measurement invariance, responsiveness, and reliability. Information on measurement error was not available for any instrument. No one instrument was identified as being appropriate for use in a non-disease specific pediatric palliative care population. The PedsQL Epilepsy and QOLCE-55 showed promise for use in children with epilepsy and palliative care needs. Conclusion: There was limited evidence on the psychometric properties of HRQOL instruments in a pediatric palliative care population. Future directions are identified including the need for additional research to test existing or develop new HRQOL outcome measures suitable for use in children and young people with serious and life-threatening illnesses. Patient-reported outcome and experience measures are needed to assess and provide quality care for children and young people with life-limiting illnesses. Generic measures that capture the daily burdens of living with life-limiting illness are needed to compare HRQOL across a variety of diseases and conditions. Public health leadership skills, such as agenda setting, advocacy, and policy promotion, are needed to accelerate the development and implementation of pediatric palliative care HRQOL measures.Master of Public Healt

A Library of Instruments Endorsed by Published Systematic Reviews for Assessing Patients and Their Care Developed by the Palliative Care Research Cooperative

Dear Editor: Palliative care research encompasses a broad array of domains, care settings, and illnesses, and the instrument literature can be difficult and time consuming to navigate. The Palliative Care Research Cooperative (PCRC) has compiled a library of *150 instruments for assessing patients and their care in palliative and end-of-life care research. This library is a resource for investigators wanting to identify relevant and high-quality instruments

Does Receipt of Recommended Elements of Palliative Care Precede In-Hospital Death or Hospice Referral?

Context. Palliative care aligns treatments with patients’ values and improves quality of life, yet whether receipt of recommended elements of palliative care is associated with end-of-life outcomes is understudied. Objectives. To assess whether recommended elements of palliative care (pain and symptom management, goals of care, and spiritual care) precede in-hospital death and hospice referral and whether delivery by specialty palliative care affects that relationship. Methods. We conducted structured chart reviews for decedents with late-stage cancer, dementia, and chronic kidney disease with a hospital admission during the six months preceding death. Measures included receipt of recommended elements of palliative care delivered by any clinician and specialty palliative care consult. We assessed associations between recommended elements of palliative care and in-hospital death and hospice referral using multivariable Poisson regression models. Results. Of 402 decedents, 67 (16.7%) died in hospital, and 168 (41.8%) had hospice referral. Among elements of palliative care, only goals-of-care discussion was associated with in-hospital death (incidence rate ratio [IRR] 1.37; 95% CI 1.01e1.84) and hospice referral (IRR 1.85; 95% CI 1.31e2.61). Specialty palliative care consult was associated with a lower likelihood of in-hospital death (IRR 0.57; 95% CI 0.44e0.73) and a higher likelihood of hospice referral (IRR 1.45; 95% CI 1.12e1.89) compared with no consult. Conclusion. Goals-of-care discussions by different types of clinicians commonly precede end-of-life care in hospital or hospice. However, engagement with specialty palliative care reduced in-hospital death and increased hospice referral. Understanding the causal pathways of goals-of-care discussions may help build primary palliative care interventions to support patients near the end of life

Elements of Palliative Care in the Last 6 Months of Life: Frequency, Predictors, and Timing

IMPORTANCE: Persons living with serious illness often need skilled symptom management, communication, and spiritual support. Palliative care addresses these needs and may be delivered by either specialists or clinicians trained in other fields. It is important to understand core elements of palliative care to best provide patient-centered care. OBJECTIVE: To describe frequency, predictors, and timing of core elements of palliative care during the last 6 months of life. DESIGN: Retrospective chart review. SETTING: Inpatient academic medical center. PARTICIPANTS: Decedents with cancer, dementia, or chronic kidney disease (CKD) admitted during the 6 months preceding death. EXPOSURES: We identified receipt and timing of core elements of palliative care: pain and symptom management, goals of care, spiritual care; and specialty palliative care utilization; hospital encounters; demographics; and comorbid diagnoses.We ran Poisson regression models to assess whether diagnosis or hospital encounters were associated with core elements of palliative care. RESULTS: Among 402 decedents, themean (SD) number of appropriately screened and treated symptoms was 2.9 (1.7)/10. Among 76.1% with documented goals of care, 58.0% had a primary goal of comfort; 55.0% had documented spiritual care. In multivariable models, compared with decedents with cancer, those with dementia or CKD were less likely to have pain and symptom management (respectively, 31% (incidence rate ratio [IRR], 0.69; 95% CI, 0.56–0.85) and 17% (IRR, 0.83; CI, 0.71–0.97)). There was amedian of 3 days (IQR, 0–173) between transition to a goal of comfort and death, and amedian of 12 days (IQR, 5–47) between hospice referral and death. CONCLUSIONS AND RELEVANCE: Although a high proportion of patients received elements of palliative care, transitions to a goal of comfort or hospice happened very near death. Palliative care delivery can be improved by systematizing existing mechanisms, including prompts for earlier goals-of-care discussion, symptom screening, and spiritual care, and by building collaboration between primary and specialty palliative care services

Impact of a Decision Aid on Surrogate Decision-Makers' Perceptions of Feeding Options for Patients With Dementia

In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates’ perceptions feeding options, and to determine if a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia

Electronic Health Record Phenotypes for Identifying Patients with Late-Stage Disease: a Method for Research and Clinical Application

BACKGROUND: Systematic identification of patients allows researchers and clinicians to test new models of care delivery. EHR phenotypes—structured algorithms based on clinical indicators from EHRs—can aid in such identification. OBJECTIVE: To develop EHR phenotypes to identify decedents with stage 4 solid-tumor cancer or stage 4–5 chronic kidney disease (CKD). DESIGN: We developed two EHR phenotypes. Each phenotype included International Classification of Diseases (ICD)-9 and ICD-10 codes. We used natural language processing (NLP) to further specify stage 4 cancer, and lab values for CKD. SUBJECTS: Decedents with cancer or CKD who had been admitted to an academic medical center in the last 6 months of life and died August 26, 2017–December 31, 2017. MAIN MEASURE: We calculated positive predictive values (PPV), false discovery rates (FDR), false negative rates (FNR), and sensitivity. Phenotypes were validated by a comparison with manual chart review. We also compared the EHR phenotype results to those admitted to the oncology and nephrology inpatient services. KEY RESULTS: The EHR phenotypes identified 271 decedents with cancer, of whom 186 had stage 4 disease; of 192 decedents with CKD, 89 had stage 4–5 disease. The EHR phenotype for stage 4 cancer had a PPV of 68.6%, FDR of 31.4%, FNR of 0.5%, and 99.5% sensitivity. The EHR phenotype for stage 4–5 CKD had a PPV of 46.4%, FDR of 53.7%, FNR of 0.0%, and 100% sensitivity. CONCLUSIONS: EHR phenotypes efficiently identified patients who died with late-stage cancer or CKD. Future EHR phenotypes can prioritize specificity over sensitivity, and incorporate stratification of high- and low-palliative care need. EHR phenotypes are a promising method for identifying patients for research and clinical purposes, including equitable distribution of specialty palliative care

Strategies to Support Recruitment of Patients With Life-Limiting Illness for Research: The Palliative Care Research Cooperative Group

The Palliative Care Research Cooperative group (PCRC) is the first clinical trials cooperative for palliative care in the United States

Improving Decision-Making for Feeding Options in Advanced Dementia: A Randomized, Controlled Trial

Feeding problems are common in dementia, and decision-makers have limited understanding of treatment options