scholarly journals Quality of life support in advanced cancer—web and technological interventions: systematic review and narrative synthesis

2021 ◽  
pp. bmjspcare-2020-002820
Author(s):  
Kathleen Kane ◽  
Fiona Kennedy ◽  
Kate L Absolom ◽  
Clare Harley ◽  
Galina Velikova
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Life Support ◽  
Well Being ◽  
Narrative Synthesis ◽  
Monitoring Tools ◽  
Technological Interventions ◽  
Cancer Trajectory ◽  
Interactive Health Communication

BackgroundAs treatments continue to progress, patients with advanced cancer are living longer. However, ongoing physical side-effects and psychosocial concerns can compromise quality of life (QoL). Patients and physicians increasingly look to the internet and other technologies to address diverse supportive needs encountered across this evolving cancer trajectory.Objectives1. To examine the features and delivery of web and technological interventions supporting patients with advanced cancer. 2. To explore their efficacy relating to QoL and psychosocial well-being.MethodsRelevant studies were identified through electronic database searches (MEDLINE, PsychINFO, Embase, CINAHL, CENTRAL, Web of Science and ProQuest) and handsearching. Findings were collated and explored through narrative synthesis.ResultsOf 5274 identified records, 37 articles were included. Interventions were evaluated within studies targeting advanced cancer (13) or encompassing all stages (24). Five subtypes emerged: Interactive Health Communication Applications (n=12), virtual programmes of support (n=11), symptom monitoring tools (n=8), communication conduits (n=3) and information websites (n=3). Modes of delivery ranged from self-management to clinically integrated. Support largely targeted psychosocial well-being, alongside symptom management and healthy living. Most studies (78%) evidenced varying degrees of efficacy through QoL and psychosocial measures. Intervention complexity made it challenging to distinguish the most effective components. Incomplete reporting limited risk of bias assessment.ConclusionWhile complex and varied in their content, features and delivery, most interventions led to improvements in QoL or psychosocial well-being across the cancer trajectory. Ongoing development and evaluation of such innovations should specifically target patients requiring longer-term support for later-stage cancer.PROSPERO registration numberCRD42018089153.

Assessment of Quality of Life in Outpatients With Advanced Cancer: The Accuracy of Clinician Estimations and the Relevance of Spiritual Well-Being—A Hoosier Oncology Group Study

2003 ◽  
Vol 21 (14) ◽  
pp. 2754-2759 ◽  
Author(s):  
Michael J. Fisch ◽  
Michael L. Titzer ◽  
Jean L. Kristeller ◽  
Jianzhao Shen ◽  
Patrick J. Loehrer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Performance Status ◽  
Well Being ◽  
Categorical Variables ◽  
Therapeutic Trial ◽  
Slight Variation ◽  
Cross Sectional ◽  
Spiritual Well Being

Purpose: To evaluate the association between quality-of-life (QOL) impairment as reported by patients and QOL impairment as judged by nurses or physicians, with and without consideration of spiritual well-being (SWB). Patients and Methods: A total of 163 patients with advanced cancer were enrolled onto a therapeutic trial, and cross-sectional data were derived from clinical and demographic questionnaires obtained at baseline, including assessment of patient QOL and SWB. Clinicians rated the QOL impairment of their patients as mild, moderate, or severe. Clinician-estimated QOL impairment and patient-derived QOL categories were compared. Correlation coefficients were estimated to associate QOL scores using different instruments. The analysis of variance method was used to compare Functional Assessment of Cancer Therapy–General scores on categorical variables. Results: There was no significant association between self-assessment scores and marital status, education level, performance status, or predicted life expectancy. However, a strong relationship between SWB and QOL was noted (P < .0001). Clinician-estimated QOL impairment matched the level of patient-derived QOL correctly in approximately 60% of cases, with only slight variation depending on the method of categorizing patient-derived QOL scores. The accuracy of clinician estimates was not associated with the level of SWB. Interestingly, a subset analysis of the inaccurate estimates revealed an association between lower SWB and clinician underestimation of QOL impairment (P = .0025). Conclusion: Clinician estimates of QOL impairment were accurate in more than 60% of patients. SWB is strongly associated with QOL, but it is not associated with the overall accuracy of clinicians’ judgments about QOL impairment.

Assistive Technologies and the Carers of People with Dementia

2016 ◽  
Vol 5 (1) ◽  
pp. 45-59
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Assistive Technologies ◽  
Narrative Review ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia, and in maintaining the independence, and quality of life of both people with dementia and their carers. The authors report a narrative review of the use of technological interventions to empower the carers of people with dementia, and relate this to a model of ageing well. They argue that this highlights the importance of empowering and connecting with carers in order to increase their participation and connection in the care of their relative/client; and conclude that both empowerment and connection contribute to maintaining autonomy and well-being of both carers and people with dementia. Technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

The most troublesome aspects of quality of life for people with advanced cancer in a supportive care trial

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18527-18527
Author(s):  
A. K. Nowak
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Intraclass Correlation ◽  
Well Being ◽  
Dry Mouth ◽  
Single Item ◽  
Retest Reliability ◽  
Data Form ◽  
Test Retest Reliability

18527 Background: ZEST is a placebo-controlled trial of sertraline for people with advanced cancer who feel depressed, anxious or tired but do not have a clear indication for antidepressants. We describe here the aspects of quality of life (QL) rated most troublesome at baseline by the first 150 subjects. Methods: Subjects completed a battery of QL questionnaires including the CES-D, HADS, FACT-G, FACT-Fatigue, and the Patient Disease and Treatment Assessment Form (Pt DATA Form). The Pt DATA Form assesses pertinent symptoms and concerns using 40 single items with a uniform response scale from 0 (no trouble at all) to 10 (worst I can imagine). Test-retest reliability was assessed with the intraclass correlation coefficient (ICC). Convergent validity was assessed by testing correlations between single items from the PT DATA Form and the corresponding, validated, multi-item scales. Results: The median age was 66 (IQR 59 to 73); median Karnofsky Perfomance Status was 80 (IQR 70 to 90); 63% were male; commonest primaries were colorectal (17%), lung (16%), prostate, (14%), breast (13%), and gynaecologic (10%). The aspects rated worst (mean score, proportion scoring >3) were: Fatigue (5.5, 90%), Problems with sex (4.1, 51%), Trouble sleeping (3.6, 49%), Drowsiness (3.5, 54%), Not feeling myself (3.5, 51%), Pain (3.4, 45%), Shortness of breath (3.4, 47%), Problems doing what I wanted (3.1, 45%), Anxiety (3.0, 40%), Depression (2.7, 36%), Dry mouth (2.7, 38%), Trouble concentrating (2.7, 30%), Irritability (2.6, 32%), Altered sense of taste (2.5, 34%), Difficulty walking (2.4, 32%), and Constipation (2.1, 24%). Mean scores were higher in men than women for Problems with sex (5.0 v 2.4, p < 0.001); and, in subjects aged 65 or younger for Hair loss (2.4 v 1.1, p = .01). There were no other significant differences by gender or age. Correlations supported the validity of the single item scales for depression, anxiety, fatigue; and for physical, emotional and overall well-being. The test-retest reliability of the Pt DATA Form was good (ICC >0.5 for 34 of 40 items). Conclusions: Pertinent aspects of QL were validly measured with single item scales. Insomnia, dry mouth, altered sense of taste and irritability were more troublesome than many other, better studied symptoms. No significant financial relationships to disclose.

A placebo-controlled trial of Sertraline's effects on symptoms, well-being and survival in advanced cancer: The ZEST Trial

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9002-9002 ◽  
Author(s):  
N. R. Wilcken ◽  
D. Goldstein ◽  
A. K. Nowak ◽  
P. J. Beale ◽  
M. Jefford ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Cox Model ◽  
Controlled Trial ◽  
Depression Scale ◽  
Final Analysis ◽  
Well Being ◽  
Hazard Ratio ◽  
Sensitivity Analyses

9002 Background: Depression, anxiety, fatigue and impaired well-being are common, important and closely related in advanced cancer. We sought to determine the effects of sertraline (a well-tolerated, SSRI antidepressant) on these symptoms and survival in a broad cross-section of people with advanced cancer but without major depression. Methods: 189 participants (pts) were randomly allocated to sertraline 50 mg daily or placebo. Assessments were at baseline; months 1, 2, 4, 6, 9, 12; and, then 3-monthly. Outcome measures rated by pts included the: Centre for Epidemiologic Studies Depression scale (CES-D); Hospital Anxiety and Depression Scale (HADS-A, HADS-D); and the Functional Assessment of Cancer Therapy General and Fatigue scales (FACT-G and FACT-F). Clinicians completed Spitzer's Quality of Life Index (SQLI). Outcomes on all scales are expressed from 0 (worst) to 100 (best). The primary analyses of sertraline's effects on quality of life were based on scores at 4 and 8 weeks adjusted for baseline scores using generalised estimating equations. Efficacy analyses are by intention to treat; toxicity analyses by treatment received. P-values and 95% confidence intervals (CI) are 2-sided. Results: Recruitment was stopped after the first planned interim analysis of 150 pts showed a trend in overall survival favouring placebo (univariable logrank p=0.04; multivariable Cox model hazard ratio 1.61, CI 1.1 to 2.5, p=0.02). This trend was weaker at the final analysis including all 189 patients and longer follow-up (univariable logrank p=0.09); and, after accounting for baseline factors (multivariable Cox model hazard ratio 1.27, CI 0.87 to 1.8, p=0.2). Sertraline had no significant effects (scale: benefit over placebo, 95% CI) on depression (CES-D: 0.4, −2.6 to 3.4), anxiety (HADS-A: 2.0, −1.5 to 5.5), fatigue (FACT-F: 0.3, −4.3 to 4.9), overall quality of life (FACT-G: 1.7, −1.3 to 4.7) or clinicians’ ratings (SQLI: 2.0, −2.5 to 6.5). Subgroup and sensitivity analyses also excluded significant benefits. Sertraline was discontinued more often and earlier than placebo (logrank p = 0.03). The trial was closed for lack of benefit. Conclusions: Sertraline did not improve symptoms, well-being or survival and should be reserved for those with a proven indication. No significant financial relationships to disclose.

scholarly journals Pilot Randomized Controlled Trial of Individual Meaning-Centered Psychotherapy for Patients With Advanced Cancer

2012 ◽  
Vol 30 (12) ◽  
pp. 1304-1309 ◽  
Author(s):  
William Breitbart ◽  
Shannon Poppito ◽  
Barry Rosenfeld ◽  
Andrew J. Vickers ◽  
Yuelin Li ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Symptom Burden ◽  
Well Being ◽  
Treatment Assessment ◽  
Spiritual Well Being ◽  
Secondary Outcomes ◽  
Anxiety Depression

Purpose Spiritual well-being and sense of meaning are important concerns for clinicians who care for patients with cancer. We developed Individual Meaning-Centered Psychotherapy (IMCP) to address the need for brief interventions targeting spiritual well-being and meaning for patients with advanced cancer. Patients and Methods Patients with stage III or IV cancer (N = 120) were randomly assigned to seven sessions of either IMCP or therapeutic massage (TM). Patients were assessed before and after completing the intervention and 2 months postintervention. Primary outcome measures assessed spiritual well-being and quality of life; secondary outcomes included anxiety, depression, hopelessness, symptom burden, and symptom-related distress. Results Of the 120 participants randomly assigned, 78 (65%) completed the post-treatment assessment and 67 (56%) completed the 2-month follow-up. At the post-treatment assessment, IMCP participants demonstrated significantly greater improvement than the control condition for the primary outcomes of spiritual well-being (b = 0.39; P <.001, including both components of spiritual well-being (sense of meaning: b = 0.34; P = .003 and faith: b = 0.42; P = .03), and quality of life (b = 0.76; P = .013). Significantly greater improvements for IMCP patients were also observed for the secondary outcomes of symptom burden (b = −6.56; P < .001) and symptom-related distress (b = −0.47; P < .001) but not for anxiety, depression, or hopelessness. At the 2-month follow-up assessment, the improvements observed for the IMCP group were no longer significantly greater than those observed for the TM group. Conclusion IMCP has clear short-term benefits for spiritual suffering and quality of life in patients with advanced cancer. Clinicians working with patients who have advanced cancer should consider IMCP as an approach to enhance quality of life and spiritual well-being.

scholarly journals The Need for Culturally Congruent Psychosocial Care for Muslims With Advanced Cancer in Non-Muslim Majority Settings

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 115s-115s
Author(s):  
M. Lazenby ◽  
Z. Alward ◽  
R. Gatarny ◽  
C. Ayash ◽  
F. Gany
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Functional Assessment ◽  
Psychosocial Care ◽  
Well Being ◽  
Beliefs And Practices ◽  
Culturally Congruent ◽  
Spiritual Well Being ◽  
Muslim Majority

Background: Little is known about the psychosocial care experience of Muslims who are in treatment of advanced cancer in non-Muslim majority settings. Aim: To describe the experience of Muslims who are in treatment of advanced cancer in a non-Muslim majority setting and to identify beliefs and practices for culturally congruent psychosocial care. Methods: This cross-sectional study, which is in progress, uses a semistructured interview guide and self-report questionnaires with Muslim patients ≥ 21 years who are in treatment of stage III or IV cancer at an academic cancer center in the northeast of the United States. Analysis of interviews is by grounded theory and of questionnaires by frequencies, percentages, and measures of central tendency and dispersion for quality of life: Functional Assessment of Cancer Therapy-General (FACT-G; range 0-108) with subscales: Physical Well-Being (PWB [range 0-28]), Social Well-Being (SWB [range 0-28]), Emotional Well-Being (EWB [range 0-24]), and Functional Well-Being (FWB [range 0-28]; higher scores reflect better quality of life Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp [range 0-48]), with subscales: peace (range 0-16), meaning (range 0-16), and faith (range 0-16); higher scores reflect better spiritual well-being. Distress Thermometer (DT; 0 = no distress, 10 = worst distress). Hospital Anxiety and Depression Scale (HADS), with subscale: anxiety (0-21) and depression (0-21); higher scores reflect worse condition. Results: Eleven (female, n=5 [45.5%]) Muslim patients from 10 countries of origin with a mean age of 55.2 (±10.9) years who were in treatment of breast, colorectal, gastric, lung, ovarian, prostate, melanoma and lymphoma cancers (Stage 4, n=8 [72.7%]) have been interviewed to date. Mean scores were: FACT-G 85.6 (±17.9) (PWB 22.3 [±5.1], SWB 23.8 [±3.8], EWB 18.6 [±4.5], FWB 20.7 [±6.7]; FACIT-Sp 123.8 (±24.6) (peace 11.6 [±4.5], meaning 13.7 [±3.1], faith 12.9 [±3.8]), DT 2.13 (SD 2.58); HADS anxiety 3.9 (±3.2) and depression 3.8 (±3.7). Four universal themes emerged: (1) Faithful Muslims must seek and submit to treatment. (2) Spiritual practices (prayer and other traditional healing practices) are sources of meaning. (3) Psychosocial care in a non-Muslim majority setting is often presented in ways incongruent with Muslims' beliefs and practices. (4) Psychosocial care would be acceptable if congruent with Muslims' beliefs and practices. Conclusion: Presenting psychosocial care as part of routine cancer treatment and, in non-Muslim majority settings, delivering psychosocial care that is culturally congruent with Islamic beliefs and practices, may increase the acceptability of psychosocial care among Muslims who are in treatment of advanced cancer.

The effect of melatonin on appetite and other symptoms in patients with advanced cancer and cachexia: A double-blind placebo-controlled trial.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9062-9062
Author(s):  
Egidio Del Fabbro ◽  
Rony Dev ◽  
David Hui ◽  
J. Lynn Palmer ◽  
Eduardo Bruera
Keyword(s):  
Quality Of Life ◽  
Weight Loss ◽  
Advanced Cancer ◽  
Interim Analysis ◽  
Controlled Trial ◽  
Well Being ◽  
Test Statistic ◽  
Double Blind ◽  
Edmonton Symptom Assessment Scale

9062 Background: Patients with advanced cancer experience anorexia and weight loss which impairs their quality of life. Prior studies suggest melatonin, a frequently used integrative medicine may attenuate weight loss, anorexia, fatigue, and depression. These studies were limited by a lack of blinding and absence of placebo controls. The primary objective of this study was to compare melatonin to placebo for appetite in patients with cachexia. Methods: A randomized, double-blind, 28 day trial of melatonin 20mg vs. placebo in patients with advanced lung or gastrointestinal cancer, appetite scores >3 on a 0 to 10 scale (10 = worst appetite) and a history of weight loss ≥ 5% within 6 months. Patients unable to maintain oral intake, thyroid or adrenal dysfunction, or with a karnofsky <40 were excluded from the study. The assessments included weight, symptom severity by Edmonton Symptom Assessment Scale (ESAS) and quality of life by the Functional Assessment of Anorexia/Cachexia Therapy (FAACT).Differences between groups from baseline to day 28 were analyzed using one-sided two sample t tests (appetite, pain and well-being) or Wilcoxon two-sample tests for the other variables. Interim analysis at half point had a Lan-DeMets monitoring boundary with an O’Brien-Fleming stopping rule. The decision boundaries for the interim test was to accept the null hypothesis of no treatment difference (futility) if the test statistic Z < 0.39 (p ≥ 0.348). Results: After interim analysis of 48 patients, the study was closed by the Data Safety Monitoring Board for futility. There were no significant differences between groups in appetite (p=0.78), weight (p= 0.17), FAACT score (p=0.95), insomnia (p=0.62) or other symptoms measured by the ESAS from baseline to day 28.No significant toxicities were observed. Conclusions: In cachectic patients with advanced cancer, 20mg oral Melatonin at night does not improve appetite, weight or quality of life compared to placebo.

scholarly journals Patient-Reported Roles in Decision-Making Among Asian Patients With Advanced Cancer: A Multicountry Study

2021 ◽  
Vol 6 (2) ◽  
pp. 238146832110613
Author(s):  
Semra Ozdemir ◽  
Chetna Malhotra ◽  
Irene Teo ◽  
Si Ning Germaine Tan ◽  
Wei Han Melvin Wong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Advanced Cancer ◽  
Cancer Diagnosis ◽  
Patient Involvement ◽  
Patient Characteristics ◽  
Well Being ◽  
Advanced Cancer Patients ◽  
Joint Decision

Purpose. We investigated 1) perceived roles in decision-making among advanced cancer patients in 5 Asian countries 2) associations of patient characteristics with these roles, and 3) the association of perceived roles with quality of life and perceived quality of care. Methods. We surveyed 1585 patients with stage IV solid cancer. Multinomial logistic regressions were used to analyze associations of patient characteristics with decision-making roles. Multivariate regressions were used to analyze associations of decision-making roles with quality of life and care. Results. The most common perceived-role was no patient involvement. Most patients (73%) reported roles consistent with their preferences. Being male, nonminority, higher educated, aware of advanced cancer diagnosis, and knowledge of cancer diagnosis for ≥1 year were associated with higher levels of patient involvement in decision-making. Compared to no patient involvement, joint decision-making (together with physicians/family) was associated with higher social (β = 2.49, P < 0.01) and spiritual (β = 2.64, P < 0.01) well-being, and better quality of physician communication (β = 9.73, P < 0.01) and care coordination (β = 13.96, P < 0.01) while making decisions alone was associated with lower emotional (β = −1.43, P < 0.01), social (β = −2.39, P < 0.01), and spiritual (β = −2.98, P < 0.01) well-being. Conclusions. Findings suggest that a substantial number of advanced cancer patients were not (and preferred not to be) involved in decision-making. Despite this finding, joint decision-making together with physicians/family was associated with better quality of life and care. Implications. Physicians should explain the benefits of shared decision making to patients and encourage participation in decision-making, while ensuring that patients feel supported and do not find decision-making overwhelming.

Carers of People with Dementia and the Use of Assistive Technologies

2015 ◽  
pp. 1425-1448
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Ethical Dilemmas ◽  
Well Being ◽  
Assistive Technologies ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia. Whilst assistive technologies have a role in maintaining the independence and quality of life of both people with dementia and their carers, their use has both disadvantages and advantages, can pose challenges for all concerned, and raises ethical dilemmas. In this chapter, a model derived from Arnstein's ladder of participation is used to highlight the importance of empowering and connecting with carers in order to increase their participation in the care of their relative or client. Empowerment and connection contribute to maintaining the autonomy and well-being of both carers and people with dementia: technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

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