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Journal of Pain and Symptom Management Jun 2024Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in...
CONTEXT
Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities.
OBJECTIVES
To evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the U.S.
METHODS
Participants included families recruited from the Children's Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity.
RESULTS
82 family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure.
CONCLUSION
The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.
PubMed: 38942094
DOI: 10.1016/j.jpainsymman.2024.06.018 -
Journal of Pain and Symptom Management Jun 2024Artificial intelligence-driven tools, like ChatGPT, are prevalent sources for online health information. Limited research has explored the congruity between AI-generated...
CONTEXT
Artificial intelligence-driven tools, like ChatGPT, are prevalent sources for online health information. Limited research has explored the congruity between AI-generated content and professional treatment guidelines.
OBJECTIVES
This study seeks to compare recommendations for cancer-related symptoms generated from ChatGPT with guidelines from the National Comprehensive Cancer Network (NCCN).
METHODS
We extracted treatment recommendations for nine symptoms from NCCN, separated into four full Supportive Care sections and five subsections of the Palliative Care webpage. We entered "How can I reduce my cancer-related [symptom]" into ChatGPT- 3.5 for these same symptoms and extracted its recommendations. A comparative content analysis focused on recommendations for medications, consultations, and non-pharmacological strategies. We compared word count and Flesch-Kincaid Grade Level (FKGL) readability for each NCCN and ChatGPT section.
RESULTS
The mean percent agreement between NCCN and ChatGPT recommendations was 37.3% (range 16.7%- 81.8%). NCCN offered more specific medication recommendations. ChatGPT did recommend medications in the constipation and diarrhea sections that were not recommended by NCCN. Significant differences in word count (p=0.03) and FKGL (p<0.01) were found for NCCN Supportive Care webpages, with ChatGPT having lower word count and reading level. In the NCCN Palliative Care webpage subsections, there was no significant difference in word count (p=0.076), but FKGL was significantly lower with ChatGPT (p<0.01).
CONCLUSIONS
While ChatGPT provides concise, accessible supportive care advice, discrepancies with guidelines raise concerns for patient-facing symptom management recommendations. Future research should consider how AI can be used in conjunction with evidence-based guidelines to support cancer patients' supportive care needs.
KEY MESSAGE
This study compares cancer-related symptom recommendations from ChatGPT with NCCN guidelines, revealing significant differences and highlighting the need for cautious integration of AI-generated content in patient care. It emphasizes the importance of professional guidance and collaboration to ensure data accuracy and quality.
PubMed: 38942093
DOI: 10.1016/j.jpainsymman.2024.06.019 -
Lung Cancer (Amsterdam, Netherlands) Jun 2024Complementary medicine and integrative oncology modalities (IOM) have been included in the clinical practice guidelines of the American College of Chest Physicians in...
INTRODUCTION
Complementary medicine and integrative oncology modalities (IOM) have been included in the clinical practice guidelines of the American College of Chest Physicians in the treatments of patients with lung cancer. The present study examined the impact of a patient-tailored IOM treatment program on quality of life (QoL)-related concerns among patients with non-small and small lung cancer undergoing active oncology treatment.
METHODS
This controlled study was pragmatic and prospective assessing the adherence among patients referred by their oncology healthcare provider to an integrative physician consultation, followed by 6 weekly IOM treatments addressing QoL-related concerns. High adherence to integrative care (high-AIC, vs. low-AIC) was defined as attending ≥4 IOM sessions. Symptoms were assessed using the ESAS (Edmonton Symptom Assessment Scale), EORTC QLQ-C30 (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire), and MYCAW (Measure Yourself Concerns and Wellbeing) tools, at baseline and 6 weeks.
RESULTS
Of 153 patients, 74 (48 %) were high-AIC, with baseline demographic, cancer-and QoL-related characteristics similar to those of low-AIC patients. At 6 weeks, high-AIC patients reported greater improvement on MYCAW well-being (p = 0.036), with within-group improvement observed for EORTC pain (p = 0.021) and emotional functioning (p = 0.041); and for ESAS depression (p = 0.005), with borderline significance for EORTC sleep (p = 0.06).
CONCLUSION
High adherence to a 6-week IOM program within supportive/palliative care for patients with lung cancer was found to alleviate pain and emotional concerns, improving overall QoL. Further research is needed to confirm the findings in real-life IOM practice for patients with lung cancer.
PubMed: 38941654
DOI: 10.1016/j.lungcan.2024.107857 -
JCO Oncology Practice Jun 2024The incidence of young-onset colorectal cancer (YOCRC; defined as patients who are diagnosed with CRC before age 50 years) is rising rapidly, and CRC is predicted to be...
PURPOSE
The incidence of young-onset colorectal cancer (YOCRC; defined as patients who are diagnosed with CRC before age 50 years) is rising rapidly, and CRC is predicted to be the leading cause of cancer death in this age group by 2030. Yet, there has been limited research into the experiences and needs of patients with YOCRC and their caregivers. The goal of this study was to better understand the experiences and needs of patients with YOCRC and their caregivers.
PATIENTS AND METHODS
Semistructured focus groups were conducted with patients with YOCRC, caregivers of patients with YOCRC, and bereaved caregivers of patients with YOCRC. Focus group discussion guides addressed the experience and impact of diagnosis and treatment of YOCRC. Results were analyzed using a thematic analysis informed by framework analysis.
RESULTS
Twenty patients and caregivers participated in three focus groups (eight patients, seven caregivers, and five bereaved caregivers). Four primary themes were identified: (1) feeling overwhelmed by the health care system and desiring patient navigation; (2) feeling isolated and wanting opportunities for peer support; (3) life disruption because of difficulty juggling multiple roles and desiring psychosocial support; and (4) enthusiasm about participation in research and genetic testing.
CONCLUSION
This study identified and described the unique experiences and care needs of patients with YOCRC and their caregivers. The findings provide evidence that specialized models of care are needed. The results of this study informed the development of a center dedicated to the care of patients with YOCRC.
PubMed: 38941570
DOI: 10.1200/OP.24.00002 -
PLOS Global Public Health 2024Patients' experiences in the intensive care unit (ICU) can enhance or impair their subsequent recovery. Improving patient and family experiences on the ICU is an...
Patients' experiences in the intensive care unit (ICU) can enhance or impair their subsequent recovery. Improving patient and family experiences on the ICU is an important part of providing high quality care. There is little evidence to guide how to do this in a South Asian critical care context. This study addresses this gap by exploring the experiences of critically ill patients and their families in ICUs in Bangladesh and India. We elicit suggestions for improvements from patients, families and staff and highlight examples of practices that support person-centred care. This multi-site hospital ethnography was carried out in five ICUs in government hospitals in Bangladesh and India, selected using purposive sampling. Qualitative data were collected using non-participant observation and semi-structured interviews and analysed using reflexive thematic analysis. A total of 108 interviews were conducted with patients, families, and ICU staff. Over 1000 hours of observation were carried out across the five study sites. We identified important mediators of patient and family experience that span many different aspects of care. Factors that promote person-centred care include access to ICU for families, support for family involvement in care delivery, clear communication with patients and families, good symptom management for patients, support for rehabilitation, and measures to address the physical, environmental and financial needs of the family. This study has generated a list of recommendations that can be used by policy makers and practitioners who wish to implement person-centred principles in the ICU.
PubMed: 38941335
DOI: 10.1371/journal.pgph.0003372 -
Revista de La Facultad de Ciencias... Jun 2024Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede... (Review)
Review
Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede verse negativamente afectada. Se llevó a cabo una revisión sistemática para sintetizar la evidencia sobre la calidad de vida de estos cuidadores. Se utilizaron la base de datos Pubmed y la biblioteca digital de la Universidad Católica Argentina. Se revisaron 13 artículos que plantearon las siguientes temáticas: calidad de vida general, impacto en las dimensiones física, emocional, social y espiritual, relación entre el género del cuidador y la calidad de vida. Se evidencia en la literatura revisada la importancia de una adecuada evaluación de los signos y síntomas en los cuidadores familiares con el fin de poder brindar asistencia integral para favorecer su calidad de vida.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Family; Female; Male
PubMed: 38941217
DOI: 10.31053/1853.0605.v81.n2.44824 -
Journal of Nephrology Jun 2024Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges.... (Review)
Review
Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges. Despite existing legal frameworks, disparities in advance care planning practices are evident across Europe. The present perspective introduces a multidisciplinary model, initiated in 2019. This model incorporates a specialized team comprising a nephrologist, a psychologist, a palliative care specialist, and an anesthesiologist/intensivist. Through this collaborative approach, we aimed to comprehensively address the intricate medical, emotional, and psychological dimensions in advance care planning. In this point of view, we discuss the strengths of our model, its potential for European Nephrology, and advocate for guidelines to enhance advance care planning implementation within the nephrology community.
PubMed: 38941001
DOI: 10.1007/s40620-024-02002-w -
European Journal of Pediatrics Jun 2024The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The...
UNLABELLED
The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese screening tool. We aimed to translate and perform a cultural adaptation to the Italian setting of the Paediatric Palliative Screening Scale. This paper was a descriptive observational cross-sectional study. We carried it out in two consecutive steps: (1) translation and back translation and (2) cultural adaptation through a Delphi process. Twenty Paediatric Palliative Care national experts were invited to judge the content and structure of the translated scale and to assess the appropriateness and clarity of each question. Consensus was defined as 70% or more of experts agreeing with each item's appropriateness and clarity. The Italian version of the Paediatric Palliative Screening Scale was obtained after two rounds of Delphi. After the second round of consultation, a substantial increase in experts' consensus was found, especially for questions 1.1, 3.2 and 3.3 (from 56.3 to 93.8%), and reaching more than 83% for all the revised items.
CONCLUSIONS
The Paediatric Palliative Screening Scale is a reliable tool that can assist in timely evaluating children who qualify for Paediatric Palliative Care. The tool can be used in Italian healthcare settings with its cultural adaptation.
WHAT IS KNOWN
• Despite the lack of early diagnosis techniques, there is a significant increase in the number of children entitled to Paediatric Palliative Care. • A specific screening tool called the Paediatric Palliative Screening Scale determines a child's suitability for paediatric palliative treatment.
WHAT IS NEW
• The Paediatric Palliative Screening Scale is necessary to assess the psychosocial needs of patients eligible for Paediatric Palliative Care. The Italian scale has good content and face validity ensuring equivalence between the original and target populations.
PubMed: 38940924
DOI: 10.1007/s00431-024-05649-6 -
The Oncologist Jun 2024Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and...
BACKGROUND
Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status.
PATIENTS AND METHODS
We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care.
RESULTS
With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001).
CONCLUSIONS
The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
PubMed: 38940449
DOI: 10.1093/oncolo/oyae159 -
Acta Medica Philippina 2024Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single...
BACKGROUND
Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single questionnaire that fits all purposes and individuals. An important challenge to QOL assessments in palliative care is the highly diverse patient population with different diagnoses, disease states/prognosis, and languages. In an outpatient palliative care clinic population, FACIT-Pal-14 proved to be a valid and reliable scale in palliative care patients.
OBJECTIVES
We aimed to (i) determine the psychometric properties of the Tagalog version of the Functional Assessment of Chronic Illness Therapy - Palliative Care - 14 (FACIT-Pal-14) and (ii) measure the Quality of Life (QOL) of Filipino cancer patients.
METHODS
This was a cross-sectional study. License for the use of the Tagalog version 4 of the FACIT-Pal-14 was requested from FACIT.org. To know the psychometric properties of the scales, Cronbach's alpha coefficient was used to assess reliability, and exploratory factor analysis, Pearson correlations, and independent samples T-test were used to determine validity.
RESULTS
The Tagalog FACIT-Pal-14 was administered to 500 Filipino cancer patients consulting at the outpatient department of a training and regional medical center. The participants were mostly female (65.5%), aged 64 years and younger (82.6%), and had breast cancer (53.2%), colorectal cancer (19.2%), and lung cancer (9.4%). The mean Tagalog FACIT-Pal-14 score was 47.35 out of 56 (SD=7.14). The Cronbach's alpha coefficient of the Tagalog version of FACIT-Pal-14 was 0.784. Significantly lower mean Tagalog FACIT-Pal-14 scores were found in patients with Karnofsky Performance Status (KPS) 70 and lower, and Eastern Cooperative Oncology Group Performance Status (ECOG-PS) 2 and above compared with patients with KPS 80 and higher and ECOG-PS 0-1. (t=3.439, p<.001). While the Tagalog FACIT-Pal-14 scores, KPS, and ECOG scores only revealed a very weak, positive correlation (r=0.095; p <0.05), this ability to distinguish between groups known to differ regarding performance status showed the construct validity of the Tagalog FACIT-Pal-14.
CONCLUSIONS
In an outpatient oncology clinic population, the FACIT-Pal 14 showed evidence of reliability and construct validity for evaluating palliative care-specific QOL in Filipino cancer patients. Using this measure, Filipino cancer patients have a good QOL. Therefore, it is recommended that the Tagalog FACIT-Pal-14 be used on subsequent patient follow-ups to assess how their QOL would change over time so that the palliative care services provided will be suited to their needs.
PubMed: 38939424
DOI: 10.47895/amp.vi0.7804