Palliative care and quality of life in patients with cancer during the terminal phase. A family/patient perspective

2021 ◽  
Author(s):  
Alicia E. Hermosilla-Ávila ◽  
Olivia Sanhueza-Alvarado ◽  
Lorena Chaparro-Díaz
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Patient Perspective ◽  
Terminal Phase ◽  
Patients With Cancer

Age, cancer site and gender associations with symptoms and problems in specialised palliative care: a large, nationwide, register-based study

2019 ◽  
pp. bmjspcare-2019-001880 ◽  
Author(s):  
Maiken Bang Hansen ◽  
Lone Ross ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Physical Function ◽  
Cancer Diagnosis ◽  
Poor Quality ◽  
Cancer Site ◽  
Patients With Cancer ◽  
Increased Risk ◽  
And Gender

BackgroundPatients referred to specialised palliative care are troubled by symptoms/problems, but more knowledge is needed on the level and frequency of symptoms/problems. It is also uncertain how gender, age and cancer diagnosis, respectively, are associated with symptoms/problems.AimsTo describe symptoms/problems in patients with cancer at the start of specialised palliative care, and to study how age, gender and cancer diagnosis were associated with symptoms/problems.DesignA register-based study including data from the Danish Palliative Care Database.Setting/ParticipantsPatients with cancer who reported their symptoms/problems using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the start of specialised palliative care were included. Ordinal logistic regression was performed to test if gender, age and cancer diagnosis were associated with each symptom/problem.Results31 771 patients with cancer were included in the study. The most prevalent and severe symptoms/problems were pain, appetite loss, fatigue, poor physical function and poor quality of life. Gender, age and cancer diagnosis were significantly associated with most symptoms/problems. The strongest associations between symptoms/problems and gender and age, respectively, were increased risk of nausea in women, as well as increased risk of poor physical function and reduced risk of sleeplessness and pain with increasing age. Patients with brain/central nervous system cancer had the lowest risk of symptoms but the highest risk of poor physical function.ConclusionAt the start of specialised palliative care, patients with cancer experience severe levels of symptoms, poor physical function and poor quality of life. Age, gender and diagnosis were significantly associated with most symptoms/problems, but the strength and direction of the associations differed across symptoms/problems.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    

Pulmonary lymphangitis and cancer: Prospective series of 37 patients in palliative care

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18600-18600 ◽  
Author(s):  
A. A. Dettino ◽  
E. M. Negri ◽  
T. Pagano
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Short Form ◽  
Primary Tumors ◽  
Patients With Cancer ◽  
The Moment ◽  
In The Beginning ◽  
Minor Criteria

18600 Background: Lymphangitis of the lungs is an uncommon type of metastasis, mainly in breast, lung and gastric cancers, and has major impact in quality of life and an unfavorable prognosis. Survival is very poor: 50% in 3 and 15% in 6 months. Our objective was to evaluate prospectively quality of life in cancer patients with pulmonary lymphangitis, under palliative care. Methods: Patients with pulmonary lymphangitis, diagnosed either by lung biopsy (major criteria) or 3 minor criteria (cyto or histotologically proven cancer, clinical picture and image exam) were followed in 3 tertiary services, in a cohort series study. Primary end point was quality of life (QoL), measured with questionnaires in the beginning of the study and monthly afterwards (Saint George Respiratory Questionnaire -SGRQ- and Medical Outcomes Study 36-Item Short-Form Health Survey -SF36). Clinical and complementary aspects were also followed, in addition to treatment and outcome. Results: Thirty-seven patients were included from Aug/2004 to Jan/2006 - 23 female and 14 male; age from 41 to 84 (mean: 62) years. Primary tumors were: lung (20), breast (11), esophagus (2), pancreas, rectum and bone. Of those patients, 33 were able to respond QoL questionnaires in the beginning of follow-up and monthly thereafter. Median follow-up was of one month (range: 0–13); at the moment, 9 patients are still alive. Median survival was 2.5 months (range: 0,1–33), with 38% with a survival of at least 6 months. In general, QoL was poor, but improved after palliative care. Notice that values get higher as QoL improves in SF-36; however, they get lower as QoL improves in SGRQ - values were 61.5, 50.5, 61.7, and 47.5% for SGRQ and 38.1, 32.1, 32.8, 61.6 for SF36 in 0, 1, 3 and 6 months, respectively. Palliative care included: corticosteroids (65%), oxygen (51%), opioids (51%), diuretics (47%), inhalations with beta2-agonists and/or ipatropium (57%), chemo and/or hormonotherapy (51%), physical therapy (43%), antidepressants and benzodiazepines (37% each), thoracocentesis (35%), and blood transfusions. Conclusions: Even though QoL is poor and survival is short for patients with cancer lymphangitis in lungs, some improvement is possible with active palliative care. No significant financial relationships to disclose.

scholarly journals Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study

10.2196/16178 ◽  
2019 ◽  
Vol 8 (12) ◽  
pp. e16178 ◽  
Author(s):  
Virginia LeBaron ◽  
James Hayes ◽  
Kate Gordon ◽  
Ridwan Alam ◽  
Nutta Homdee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Care Providers ◽  
Patients With Cancer ◽  
Smart Watch ◽  
Smart Health

Background An estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology (“Smart Health”) has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain. Objective This study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers). Methods This descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content. Results Recruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021. Conclusions BESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services. International Registered Report Identifier (IRRID) DERR1-10.2196/16178

scholarly journals Associations Between The Spiritual Well-Being (EORTC QLQ-SWB32) and Quality of Life (EORTC QLQ-C30) of Patients Receiving Palliative Care for Cancer in Cyprus

2021 ◽  
Author(s):  
Maria Kyranou ◽  
Marianna Nicolaou
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Well Being ◽  
Cancer Data ◽  
Patients With Cancer ◽  
Spiritual Well Being ◽  
Eortc Qlq C30 ◽  
The Mean ◽  
Eortc Qlq

Abstract Background: Spiritual well-being is increasingly investigated in relation to patients’ perceived quality of life and is generally thought as having the potential to support patients with cancer who receive palliative care. Until recently, questionnaires used to assess spiritual well-being were developed mainly in the US. The purpose of this study was to translate and use the EORTC- SWB32, a newly developed tool, validated recently in 4 continents, 14 countries, and in 10 languages, to explore relationships of spiritual well-being with quality of life in patients with cancer.Methods: One hundred four patients participated in this study with an average age of 59 years. Of those, 79% were dealing with metastatic cancer. Data collection took place in three oncology centers from two large cities in Cyprus. The acceptability of the translated items was tested. Two questionnaires were employed for the assessment of quality of life and spiritual well-being, developed by the same organization: the EORTC QLQ-C30 and the EORTC QLQ-SWB32. The scores for each tool were analyzed separately and correlations between the two measures were explored. Results: Patients found the items of the SWB32 tool easy to understand and answer. They attested that filling the questionnaire prompted thoughts about their own spirituality. The mean score for Global Spiritual Well-Being was 60.4 (SD=23.7) and it was associated with the mean scores in the scales “Emotional functioning” and “Cognitive functioning” of the EORTC-QOL-C30 (0.42 and 0.40 respectively, p<0.01). The mean score for the “Relationship with God” scale (74.9, SD=29.7) reported by the Cypriot patients is high and compatible with the homogenous spiritual orientation of the island’s population.Conclusions: All subscales of the SWB32 tool demonstrated good internal consistency in this study. Significant associations were observed between dimensions of quality of life and spiritual well-being. Additionally, the participants found the items easy to answer consistent with the tool’s suggested clinical utility which lays the ground for the application of targeted interventions to enhance spiritual well-being.

scholarly journals Associations between the spiritual well-being (EORTC QLQ-SWB32) and quality of life (EORTC QLQ-C30) of patients receiving palliative care for cancer in Cyprus

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Kyranou ◽  
Marianna Nicolaou
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Well Being ◽  
Cancer Data ◽  
Patients With Cancer ◽  
Spiritual Well Being ◽  
Eortc Qlq C30 ◽  
The Mean ◽  
Eortc Qlq

Abstract Background Spiritual well-being is increasingly investigated in relation to patients’ perceived quality of life and is generally thought as having the potential to support patients with cancer who receive palliative care. Until recently, questionnaires used to assess spiritual well-being were developed mainly in the US. The purpose of this study was to translate and use the EORTC- SWB32, a newly developed tool, validated recently in 4 continents, 14 countries, and in 10 languages, to explore relationships of spiritual well-being with quality of life in patients with cancer. Methods One hundred four patients participated in this study with an average age of 59 years. Of those, 79% were dealing with metastatic cancer. Data collection took place in three oncology centers from two large cities in Cyprus. The acceptability of the translated items was tested. Two questionnaires were employed for the assessment of quality of life and spiritual well-being, developed by the same organization: the EORTC QLQ-C30 and the EORTC QLQ-SWB32. The scores for each tool were analyzed separately and correlations between the two measures were explored. Results Patients found the items of the SWB32 tool easy to understand and answer. They attested that filling the questionnaire prompted thoughts about their own spirituality. The mean score for Global Spiritual Well-Being was 60.4 (SD = 23.7) and it was associated with the mean scores in the scales “Emotional functioning” and “Cognitive functioning” of the EORTC-QOL-C30 (0.42 and 0.40 respectively, p < 0.01). The mean score for the “Relationship with God” scale (74.9, SD = 29.7) reported by the Cypriot patients is high and compatible with the homogenous spiritual orientation of the island’s population. Conclusions All subscales of the SWB32 tool demonstrated good internal consistency in this study. Significant associations were observed between dimensions of quality of life and spiritual well-being. Additionally, the participants found the items easy to answer consistent with the tool’s suggested clinical utility which lays the ground for the application of targeted interventions to enhance spiritual well-being.

A psychosocial and pshycoeducational intervention for cancer patients integrated into routine care: A study from India.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. e19518-e19518 ◽  
Author(s):  
Anita Chandra
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Health Professionals ◽  
Psychosocial Intervention ◽  
Psychological Intervention ◽  
Symptom Control ◽  
Psychosocial Care ◽  
Patients With Cancer ◽  
Oncology Care

e19518 Background: Patients with cancer experience significant distress and access to effective psychosocial care is limited by lack of systematic approach. This paper presents results of a study to evaluate the effectiveness of a brief tailored psychosocial intervention delivered by health professionals in cancer care in developing countries. Methods: Health professionals deliver the multicomponent, psychoeducational and psychosocial intervention focusing on core concepts of quality of life, supportive-expressive, cognitive, social functioning, symptom scale and dignity-conserving care. A total of 100 patients recruited across all tumour sites, from July 2011 to December 2011, in a University Hospital in India. Eligible patients received 2 sessions, each for 30 minutes in length, delivered face-to-face at baseline and 12 week follow-up. Results: Quality of life was measured by using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire .In this study the functional scales were high, whereas in the symptom scales fatigue (48.9%) and financial difficulties (45.53%) were noted. Percentages of families who evaluated by the palliative care team voted as useful or very useful were: 80% (symptom control), 85% (emotional support), 86% (family support), and 87% (care coordination). Compared with participants receiving usual oncology care, those receiving a palliative care-focused intervention addressing psychosocial care provided concurrently with oncology care had higher scores for quality of life and mood. Conclusions: This study will provide important information about the effectiveness of a brief tailored psychological intervention for patients with cancer in a developing country. This model of care should be a systematic implementation in routine clinical practice cancer settings in resource restraints countries. [Table: see text]

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