Spiritual distress: symptoms, quality of life and hospital utilisation in home-based palliative care

2021 ◽  
pp. bmjspcare-2021-003090
Author(s):  
Andre Cipta ◽  
Bethany Turner ◽  
Eric C Haupt ◽  
Henry Werch ◽  
Lynn Reinke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Symptom Burden ◽  
Well Being ◽  
Spiritual Distress ◽  
Home Based ◽  
Edmonton Symptom Assessment Scale ◽  
Hospital Utilisation ◽  
Mental Well Being

ObjectivesThe purpose of this study was to use a spiritual screening question to quantify the prevalence of spiritual distress (SD) in a large cohort of seriously ill patients at admission to home-based palliative care (HBPC) and to examine the associations between SD with symptom burden, quality of life and hospital-based utilisation up to 6 months after admission to HBPC.MethodsData for this cohort study (n=658) were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC. At admission to HBPC, SD was measured using a global question (0–10-point scale: none=0; mild=1–4; moderate-to-severe=5+); symptoms and quality of life were measured with the Edmonton Symptom Assessment Scale (ESAS) and PROMIS-10. Hospital utilisation was captured using electronic records and claims. Median regression and proportional hazard competing risk models assessed the association between SD with symptoms and quality of life, and hospital utilisation, respectively.ResultsNearly half of the patients/proxies reported some level of SD. Increasing SD was significantly associated with higher symptom burden (increase of 7–14 points on ESAS) and worse mental well-being (decrease of 2.7 to 4.6 points on PROMIS-10-mental) in adjusted models. Compared with patients/proxies who reported no SD, those with at least some level of SD were not at increased risk for hospital-based utilisation over a median follow-up period of 2 months.ConclusionWhile SD is cross-sectionally associated with worse symptoms and mental well-being, it did not predict downstream hospital-based utilisation. Our results highlight the importance of assessing for and managing SD in patients with serious illness.

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.

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.

scholarly journals Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis

2017 ◽  
Vol 24 (5) ◽  
pp. 663-674 ◽  
Author(s):  
Alessandra Solari ◽  
Andrea Giordano ◽  
Francesco Patti ◽  
Maria Grazia Grasso ◽  
Paolo Confalonieri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Palliative Care ◽  
Controlled Trial ◽  
Statistical Significance ◽  
Symptom Burden ◽  
Palliative Approach ◽  
Home Based ◽  
Palliative Care Outcome Scale

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.

Telemedically Augmented Palliative Care

2017 ◽  
pp. 1228-1246
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.

Telemedically Augmented Palliative Care

2016 ◽  
pp. 183-199
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.

scholarly journals mMRC dyspnoea scale indicates impaired quality of life and increased pain in patients with idiopathic pulmonary fibrosis

2017 ◽  
Vol 3 (4) ◽  
pp. 00084-2017 ◽  
Author(s):  
Kaisa Rajala ◽  
Juho T. Lehto ◽  
Eva Sutinen ◽  
Hannu Kautiainen ◽  
Marjukka Myllärniemi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Linear Relationship ◽  
Real Life ◽  
Symptom Burden ◽  
Cross Sectional ◽  
Edmonton Symptom Assessment Scale

This study was undertaken to investigate idiopathic pulmonary fibrosis (IPF) patients' health-related quality of life (HRQoL) and symptoms in a real-life cross-sectional study. Our secondary aim was to create a simple identification method for patients with increased need for palliative care by studying the relationship between modified Medical Research Council (mMRC) dyspnoea scale, HRQoL and symptoms.We sent a self-rating HRQoL questionnaire (RAND-36) and modified Edmonton Symptom Assessment Scale (ESAS) to 300 IPF patients; 84% of the patients responded to these questionnaires.The most prevalent (>80%) symptoms were tiredness, breathlessness, cough and pain in movement. An increasing mMRC score showed a linear relationship (p<0.001) to impaired HRQoL in all dimensions of RAND-36 and the severity of all symptoms in ESAS. Dimensions of RAND-36 fell below general population reference values in patients with mMRC score ≥2. The intensity of pain in movement (p<0.001) and at rest (p=0.041), and the prevalence of chest pain (p<0.001) had a positive linear relationship to increased mMRC score.An increasing mMRC score reflects impaired HRQoL and a high symptom burden. In clinical practice, the mMRC scale could be used for screening and identification of IPF patients with increased need for palliative care.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

Disease-modifying therapies in advanced cancer

2021 ◽  
pp. 800-807
Author(s):  
Olav Dajani ◽  
Karin Jordan
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Side Effects ◽  
Well Being ◽  
Patient Comfort ◽  
Optimal Care ◽  
Disease Modifying ◽  
Critical Components ◽  
Improve Patient

In many situations, anticancer therapies may be critical components when optimizing patient comfort, function, quality of life, and duration of survival. Optimal care requires the integration of oncological and palliative care and it is very important for palliative care clinicians to be familiar with oncological approaches to improve patient well-being, and also the limitations of such approaches. This integrative role requires that palliative care clinicians have a basic literacy regarding anticancer therapies and the expectations and side effects of their treatments. Together with anticancer therapies, medical oncology should encompass patient-centred care by providing supportive and palliative interventions at all stages of the disease, from the time of diagnosis.

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