Current measures of distress may not account for what's most important in existential care interventions: Results of the outlook trial

2020 ◽  
Vol 18 (6) ◽  
pp. 648-657
Author(s):  
Karen E. Steinhauser ◽  
Karen M. Stechuchak ◽  
Katherine Ramos ◽  
Joseph Winger ◽  
James A. Tulsky ◽  
...  

AbstractObjectiveCompare the efficacy of two interventions addressing emotional and existential well-being in early life-limiting illness.MethodPrimary trial analysis (n = 135) included patients with advanced cancer, congestive heart failure, or end-stage renal disease; Arm 1 received the Outlook intervention, addressing issues of life completion and preparation, and Arm 2 received relaxation meditation (RM). Primary outcomes at five weeks (primary endpoint) and seven weeks (secondary): completion and preparation (QUAL-E); secondary outcomes: anxiety (POMS) quality of life (FACT-G) and spiritual well-being (FACIT-Sp) subscales of faith, meaning, and peace.ResultsAverage age was 62; 56% were post-high school-educated, 54% were married, 52% white, 44% female, and 70% had a cancer diagnosis. At baseline, participants demonstrated low levels of anxiety (<5 on POMS subscale) and depression (<10 on CESD) relative to population norms. Results of the primary analysis revealed no significant differences in mean Preparation by treatment arm at five weeks (14.4 Outlook vs. 14.8 RM; between-group difference −0.4 [95% CI, −1.6, 0.8], p = 0.49) or seven weeks (15.2 vs.15.4; between-group difference −0.2 [95% CI, −1.5, 1.0], p = 0.73). There were also no significant differences in mean Life Completion by treatment arm between five weeks (26.6 Outlook vs. 26.3 RM; between-group difference 0.2 [95% CI, −1.2, 1.7], p = 0.76) or seven weeks (26.5 vs. 27.5; between-group difference −1.0 [95% CI, −2.7, 0.7], p = 0.23). Compared to RM, Outlook participants did not have significant differences over time in the secondary outcomes of overall quality of life, anxiety, depression, FACT-G subscales, and FACIT-Sp subscales.DiscussionIn early-stage life-limiting illness, Outlook did not demonstrate a significant difference in primary or secondary outcomes relative to RM. Results underscore the importance of pre-screening for distress. Qualitatively, Outlook participants were able to express suppressed emotions, place illness context, reflect on adaptations, and strengthen identity. Screening for distress and identifying specified measures of distress, beyond anxiety and depression, is essential in our ability to adequately assess the multi-dimensional mechanisms that decrease existential suffering.

2012 ◽  
Vol 30 (12) ◽  
pp. 1304-1309 ◽  
Author(s):  
William Breitbart ◽  
Shannon Poppito ◽  
Barry Rosenfeld ◽  
Andrew J. Vickers ◽  
Yuelin Li ◽  
...  

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.


2021 ◽  
pp. 445-451
Author(s):  
David W. Kissane

Group therapy in cancer care commonly involves the application of supportive-expressive, cognitively oriented, or meaning-centered models, which seek to optimize quality of life and adaptation to illness through inherent group support, psychoeducation, and improved coping outcomes. Groups can restore body image and reduce fear of recurrence and cancer-related anxiety for early-stage disease. In the advanced cancer setting, groups ameliorate and prevent depression, reduce existential distress, and promote creative and purposeful living among their members. Meaning-centered group therapy enhances spiritual well-being and quality of life. Overcoming social isolation, treating depression, and enhancing adherence to anticancer therapies has the potential to extend survival. Meta-analyses of supportive-expressive groups have confirmed a survival benefit at one year, which has not been sustained over five years.


1970 ◽  
Vol 4 (2) ◽  
Author(s):  
Aan Nuraeni ◽  
Ristina Mirwanti ◽  
Anastasia Anna ◽  
Ayu Prawesti ◽  
Etika Emaliyawati

Prevalensi Penyakit Jantung Koroner (PJK) terus mengalami peningkatan setiap tahunnya dan menjadi masalah kesehatan utama di masyarakat saat ini. PJK berdampak terhadap berbagai aspek kehidupan penderitanya baik fisik, psikososial maupun spiritual yang berpengaruh terhadap kualitas hidup pasien. Isu kualitas hidup dan faktor-faktor yang berhubungan didalamnya belum tergambar jelas di Indonesia. Tujuan dari penelitian ini adalah mengidentifikasi faktor yang memengaruhi kualitas hidup pada pasien PJK yang sedang menjalani rawat jalan. Faktor-faktor yang diteliti dalam penelitian ini meliputi jenis kelamin, tingkat penghasilan, revaskularisasi jantung, rehabilitasi jantung, kecemasan, depresi dan kesejahteraan spiritual. Kecemasan diukur dengan Zung Self-rating Anxiety Scale, depresi diukur dengan Beck Depression Inventory II, kesejahteraan spiritual diukur dengan kuesioner Spirituality Index of Well-Beingdan kualitas hidup diukur menggunakan Seattle Angina Questionnaire. Penelitian ini menggunakan rancangan kuantitatif deskriptif dan analitik multivariatedengan regresi logistic. Diteliti pada 100 responden yang diambil secara randomdalam kurun waktu 1 bulan di Poli Jantung. Hasil penelitian menunjukkan faktor yang memengaruhi kualitas hidup pada pasien PJK adalah cemas (p) 0,002; Odd Ratio(OR) 4,736 (95% confidence interval(CI), 1,749 – 12,827); depresi (p) 0,003; OR 5,450 ( 95% CI, 1,794 – 16,562); dan revaskularisasi (p) 0,033; OR 3,232 (95% CI, 1,096 – 9,528). Depresi menjadi faktor yang paling berpengaruh terhadap kualitas hidup pasien PJK. Faktor yang memengaruhi kualitas hidup pada pasien PJK meliputi depresi, cemas dan revaskularisasi. Dari ketiga variabel tersebut depresi merupakan variabel yang paling signifikan berpengaruh, sehingga manajemen untuk mencegah depresi perlu mendapatkan perhatian lebih baik lagi dalam discharge planningataupun rehabilitasi jantung.Kata kunci: Cemas, depresi, faktor yang memengaruhi, kualitas hidup, spiritual.Factors Influenced the Quality of Life among Patients Diagnosed with Coronary Heart Disease AbstractCoronary Heart Disease (CHD) has affected multidimensional aspects of human live nowadays. Yet, quality of life and factors associated with quality of life among people who live with heart disease has not been explored in Indonesia. This study aimed to identify factors influenced the quality of life among people with CHD received outpatient services. Those factors are gender, income, revascularization, cardiac rehabilitation, anxiety, depression and spiritual well-being. Zung Self-rating Anxiety Scale was used to measure anxiety where depression level measured using Beck Depression Inventory II. Spirituality index was used to measure spiritual well-being. The quality of life level was measured using the Seattle Angina Questionnaire. This study used quantitative descriptive with multivariate analysis using logistic regression. 100 respondents were randomly selected from the Cardiac Outpatient Unit. Findings indicated factors influenced the quality of life of CHD patients using a significance of ƿ-value < 0.005 were: anxiety (ƿ=0,002, OR = 4,736, 95% CI, 1,749 – 12,827); depression (ƿ=0,003; OR=5,450, 95% CI, 1,794 – 16,562); and revascularizations (ƿ=0,033; OR=3,232, 95% CI, 1,096 – 9,528). Depression was considered as the most significant factor; therefore, managing depression is a priority in the discharge planning or cardiac rehabilitation programme. Keywords: Anxiety, depression, quality of life, spiritual, well-being.


2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen

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.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.


2003 ◽  
Vol 21 (14) ◽  
pp. 2754-2759 ◽  
Author(s):  
Michael J. Fisch ◽  
Michael L. Titzer ◽  
Jean L. Kristeller ◽  
Jianzhao Shen ◽  
Patrick J. Loehrer ◽  
...  

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.


2018 ◽  
Vol 103 (9) ◽  
pp. 1314-1319 ◽  
Author(s):  
Eva K Fenwick ◽  
Ryan E K Man ◽  
Alfred Tau Liang Gan ◽  
Neelam Kumari ◽  
Charlene Wong ◽  
...  

Background/aimsTo assess the independent impact of diabetic retinopathy (DR) on three domains of vision-related quality of life (VRQoL) in a Chinese Singapore population.MethodsThe Singapore Chinese Eye Study (n=3353; 2009–2011) was a population-based, prospective, cross-sectional study conducted at the Singapore Eye Research Institute. The study population included 292 adults with diabetes, with and without DR. DR (better eye) was categorised as presence and absence of any DR; severity of DR (no vision-threatening DR (VTDR); severe non-proliferative DR (NPDR); PDR and/or clinically significant macular oedema and VTDR). Our main outcome was VRQoL which was measured using Rasch-calibrated scores from the ‘Reading’, ‘Mobility’ and ‘Emotional’ domains of the Impact of Vision Impairment questionnaire. The relationship between DR and VRQoL was assessed using multiple linear regression models.ResultsOf the 292 individuals (mean age 61.35 ± 9.66 years; 55.8% male), 201 (68.8%), 49 (16.8%), 20 (6.8%), 22 (7.5%) and 27 (9.2%) had no DR, minimal-mild NPDR, moderate-severe NPDR, PDR and VTDR, respectively. Any DR and VTDR were independently associated with 6% and 12% worse Reading scores and 7% and 18% poorer Emotional well-being, respectively, compared with those without DR. These associations persisted after separate adjustment for visual impairment and presenting visual acuity. No significant difference was found in the Mobility domain between persons with and without DR.ConclusionsWe documented that DR, particularly VTDR, was independently associated with restrictions in Reading and Emotional well-being. Understanding factors underlying the detrimental DR-VRQoL relationship may optimise rehabilitation outcomes for individuals with DR.


2018 ◽  
Vol 34 (2) ◽  
pp. 118-125 ◽  
Author(s):  
Jonathon Judkins ◽  
Irena Laska ◽  
Judith Paice ◽  
Priya Kumthekar

Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups. Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being. Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains (“Rate your overall physical/psychological/social/spiritual well-being”). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL. Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.


2020 ◽  
Vol 5 (3) ◽  
pp. 211-216
Author(s):  
Dolly Bansal ◽  
Vijendra Nath Pathak ◽  
J. Pradhan ◽  
Anu Chaudhary

The study aims to highlight the occupation level on occupational stress, psychological well-being, and quality of life of Indian Army Personnel. The study was conducted on one hundred fifty Indian male Army Personnel of different rank belonging to 25 years to 45 years of age group. The cross-sectional design was used. The sample was selected through the purposive sampling technique. The tools measures like the Occupational Stress Index, Psychological Well-Being Scale and WHO Quality of Life-BREF Hindi was individually administered. The data were analysed using descriptive and inferential statistics. One way Analysis of Variance results revealed that there is a significant difference in occupational levels on occupational stress, psychological well-being, and quality of life among Indian Army personnel. Pearson product-moment correlations coefficient showed a significant negative relationship between occupational stress with psychological well-being and quality of life and showed a significant positive relationship between psychological well-being and quality of life among Indian Army Personnel.


2019 ◽  
Vol 6 (1) ◽  
pp. 35-40
Author(s):  
Mónica Gallegos Alvarado ◽  
Ma Cristina Ochoa Estrada ◽  
Mayra Guadalupe Hernández Romero ◽  
Martha Lilia Parra Dominguez ◽  
Eloísa Esquivel Rodriguez ◽  
...  

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