scholarly journals Burden and Needs of Patients with Severe GvHD from the Supportive and Palliative Care Perspective—A Literature Review

Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2697
Author(s):  
Freya Wenzel ◽  
Anne Pralong ◽  
Udo Holtick ◽  
Christoph Scheid ◽  
Marco Herling ◽  
...  
Keyword(s):  
Palliative Care ◽  
Patient Group ◽  
Symptom Burden ◽  
Standard Of Care ◽  
Well Being ◽  
Physical Symptoms ◽  
Curative Intent ◽  
Hematopoietic Stem ◽  
Spiritual Well Being ◽  
And Function

Graft-versus-host disease (GvHD) is a frequent, and often life-threatening, complication after an allogeneic, hematopoietic stem cell transplantation (allo-SCT). It can appear in an acute or a chronic form and presents different grades of severity. Particularly, the severe forms of GvHD are often responsible for a change of the curative intent for allo-SCT into a palliative goal of care. For this non-systematic review, we conducted a focused literature search in the MEDLINE database via PubMed to examine whether patients with severe forms of GvHD might have special needs and burdens from a supportive and palliative care perspective. To draw a comprehensive picture of this patient group, we included findings on quality of life (QoL) and physical symptoms and function as well as psychological and spiritual well-being. In most domains, patients with severe forms of GvHD showed greater impairment and a higher symptom burden compared to patients with milder forms of GvHD. However, we could not identify any studies that specifically investigated patients with severe forms of GvHD. Further research in this field is necessary to guarantee the highest standard of care for this very special patient group.

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

Integration and feasibility of symptom burden assessment and early palliative care into an adolescent and young adult leukemia clinic.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10052-10052
Author(s):  
Amy Yuan Wang ◽  
Karen Sarah Hoehn ◽  
Collin Hanson ◽  
Sarah Monick ◽  
Fay J. Hlubocky ◽  
...  
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Emotional Distress ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Well Being ◽  
Brief Symptom Inventory ◽  
Early Palliative Care ◽  
Spiritual Well Being

10052 Background: Patients (pts) diagnosed with hematologic malignancies during adolescence & young adulthood (AYA) are a uniquely challenging population who are understood to have robust supportive care needs. Here, we describe their symptom burdens and the feasibility of integrating palliative care into an outpatient, multi-disciplinary AYA leukemia clinic at an academic medical center. Methods: Palliative care was introduced into the AYA clinic in 8/2020 to provide symptom-focused care. Pre-existing clinic services included psychologists, pharmacists, and social workers. All established pts receiving routine follow up were referred by the oncology team to the Supportive Care team, which provided same-day palliative care consultation in the same clinic space with a telehealth option and as needed follow-up. To describe baseline symptom burdens, a random cross-sectional sample of pts completed a multi-domain symptom assessment (SA) using validated self-report instruments including physical (Edmonton Symptom Assessment Scale [ESAS]); emotional (Brief Symptom Inventory-18 [BSI-18]); financial (FACIT-COST); cognitive (Childhood Cancer Survivor Study – Neurocognitive Questionnaire); spiritual (FACIT -Spiritual Well-being Scale); and quality of life (QOL) (FACT-General) measures. All pts have a diagnosis of acute or chronic leukemia and were on active treatment or in survivorship. Results: Over 6 months, 30 pts (median age 29 years at assessment, range 18-45 years) received symptom-focused palliative care over 16 combined clinics with 81 total encounters averaging 5 pts (range 1-8) per clinic. 47% were female. No pts declined palliative care. Pts received on average 2.7 follow up visits (range 1-6), with 50% of encounters resulting in adjustments to medical management. Common issues addressed included pain, muscle cramps, neuropathy, anxiety, insomnia, depression, nausea, and non-pharmacological symptom control remedies. Of 46 pts, 31 (67%) completed the SA (median age 30 years at assessment, range 18-43 years); 48% were female; 84% were on treatment. 100% of pts reported fatigue, and 48% reported > = 1 severe symptom (range 0-7) based on the ESAS with “poor feeling of well-being” as the most common (23%). 45% met criteria for BSI-18 emotional distress, and 45% reported some neurocognitive impairment. Emotional distress (p < 0.01), financial toxicity (p = 0.03), low spiritual well-being (p < 0.01), and presence of pain, nausea, or depression (p < 0.05) were all associated with lower QOL. Conclusions: AYA pts with leukemia undergoing treatment and in survivorship experience high symptom burden with poor QOL. It is feasible to both assess symptom burden and provide early palliative care focused on symptom management in an outpatient, multi-disciplinary clinic setting.

Meaning-Centered Psychotherapy in the Cancer Setting

2017 ◽  
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Well Being ◽  
Palliative Care Setting ◽  
Counseling Interventions ◽  
Spiritual Well Being ◽  
Hastened Death ◽  
Cancer Setting ◽  
Nonpharmacologic Intervention

There is an evolution taking place regarding the nature and scope of the clinical goals of psychotherapeutic or counseling interventions in the palliative care setting. Meaning-Centered Psychotherapy in the Cancer Setting provides a theoretical context for meaning-centered psychotherapy (MCP), a nonpharmacologic intervention that has been shown to enhance meaning and spiritual well-being, increase hope, improve quality of life, and significantly decrease depression, anxiety, desire for hastened death, and symptom burden distress in the cancer setting. Based on the work of Viktor Frankl and his concept of logotherapy, MCP is an innovative intervention for clinicians practicing in fields of psycho-oncology, palliative care, bereavement, and cancer survivorship. This resource contains chapters on adapting MCP for different cancer-related populations and for different purposes and clinical problems, including interventions for cancer survivors, caregivers of cancer patients, adolescents and young adults with cancer, as a bereavement intervention, and cultural and linguistic applications in languages such as Mandarin, Spanish, and Hebrew.

scholarly journals Impact of Palliative Care in Evaluating and Relieving Symptoms in Patients with Advanced Cancer. Results from the DEMETRA Study

2020 ◽  
Vol 17 (22) ◽  
pp. 8429
Author(s):  
Oscar Corli ◽  
Giacomo Pellegrini ◽  
Cristina Bosetti ◽  
Luca Riva ◽  
Matteo Crippa ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Well Being ◽  
Physical Symptoms ◽  
Assessment System ◽  
Intervention Patient ◽  
Almost All

Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention. Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017–November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS). Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased. Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients’ advanced disease and short survival.

scholarly journals A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Well Being ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening Illness ◽  
Spiritual Well Being ◽  
Life Threatening

Abstract Background: Conventionally, psycho-socio-spiritual interventions for parents of children with chronic life-threatening illness begin post child loss. Pre-loss interventions addressing anticipatory grief can improve holistic well-being and grief outcomes among family caregivers of dying patients. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life. However, inadequacies exist both globally and in Singapore in providing culturally sensitive psycho-socio-spiritual support to parents whose children need pediatric palliative services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapist-facilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child’s chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. The online NeW-I platform and the relative anonymity it offers to participants is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with emotional expression even during times of loss and separation. Together with four local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 72 parents. Potential effectiveness of NeW-I and accessibility and feasibility of implementing and delivering the intervention are assessed. Discussion: NeW-I aspires to improve psycho-socio-spiritual well-being of parents facing their child’s chronic life-threatening illness through a structured cyber-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study will inform the development of a standardized NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

scholarly journals Investigation Of Spiritual Well-Being Palliative Care Of Patients

2019 ◽  
Vol 9 (7) ◽  
pp. 496-513 ◽  
Author(s):  
Fadime Çinar*, Turgay Sirin
Keyword(s):  
Palliative Care ◽  
Personal Information ◽  
Healing Process ◽  
Well Being ◽  
Term Treatment ◽  
Long Term Treatment ◽  
Spiritual Well Being ◽  
Life Threatening ◽  
The Difference ◽  
The Individual

Background: One of the indispensable aspects of the philosophy of holistic care,and negative situations such as life-threatening illness, spiritual well-being, which isdefined as the search for a relationship with a divine soul, is a requirement that mustbe met in order to maintain the existence of the individual. The patient's need forsocial and spiritual well-being increases even more in cases of long-term treatment,such as cancer, that reduce the quality of life. Determining and meeting the spiritualneeds of the individual in the difficult times of the crisis can be realized bydetermining the spiritual well-being levels of the individuals and by providing theindividual spiritual care. This study was conducted to determine the level of thespiritual well-being of palliative care patients diagnosed with cancer. Methods: Thisis a descriptive study. The population of the study consisted of 124 patientsdiagnosed with cancer who were hospitalized in the palliative unit between Januaryand August 2018 and were treated in two state hospitals operating on the Europeanside of Istanbul. The sample consisted of 111 people with voluntary participationand communication. Personal Information Form and Spiritual Well-being Scalewere used to collect data. Data were evaluated by one-way analysis of variance (one-way anova) and significance (t-test) of the difference between the two means.Results: The total score averages from the spiritual good scale of individualsparticipating in the Study were determined to be good with x = 4,15. In terms ofthe level of education of Scale scores, only "Anomi" is significantly differentiatedbetween groups of age, with a total score of the scale, In the sub-dimension oftranscendity and the subdimension of "Harmony with Nature" according to thevariable metastasis (p > 0.05). Conclusion: Spiritual Well-being has a positive effecton the healing process of individuals with impaired health. It helps individuals whohave a crisis in life threatening diseases such as Cancer to cope with this crisis and toprovide spiritual well-being in the sense of life. In This process, spiritual careinitiatives by healthcare professionals can be transformed into a part of the healingprocess and the spiritual goodness of the individual can be increased. Furtherresearch in This area is projected to contribute to the richening of the relevantliterature in Turkey.Key words: Spiritual, spiritual well-being, palliative care, palliative care unit

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

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