Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study

Background Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. Objective The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. Methods A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient’s situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). Results The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. Conclusions We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home. International Registered Report Identifier (IRRID) PRR1-10.2196/13933

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Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study (Preprint)

10.2196/preprints.13933 ◽

2019 ◽

Author(s):

André Fringer ◽

Eleonore Arrer ◽

Edith Maier ◽

Wilfried Schnepp ◽

Tom Ulmer

Keyword(s):

Palliative Care ◽

Home Care ◽

Early Warning ◽

Early Warning System ◽

Care Setting ◽

Symptom Burden ◽

Warning System ◽

Care Needs ◽

Palliative Care Needs ◽

At Home

BACKGROUND Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. OBJECTIVE The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. METHODS A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient’s situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). RESULTS The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. CONCLUSIONS We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home.

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Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany

Palliative & Supportive Care ◽

10.1017/s1478951516000699 ◽

2016 ◽

Vol 15 (3) ◽

pp. 288-294 ◽

Cited By ~ 4

Author(s):

Johannes Wüller ◽

Stefanie Küttner ◽

Ann Christina Foldenauer ◽

Roman Rolke ◽

Tania Pastrana

Keyword(s):

Palliative Care ◽

Home Care ◽

Depression Scale ◽

Distress Thermometer ◽

Karnofsky Performance Scale ◽

Cutoff Score ◽

Care Needs ◽

The Mean ◽

Palliative Care Needs ◽

At Home

ABSTRACTObjective:Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home.Method:Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected.Results:A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0–40 = 30.3%, 50–70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and –LR = 0.203 (<0.3).Significance of results:The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.

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There's no Place like Home: Oklahoman's Preferences for Site of Death

Palliative Care Research and Treatment ◽

10.4137/pcrt.s1058 ◽

2008 ◽

Vol 1 ◽

pp. PCRT.S1058 ◽

Cited By ~ 1

Author(s):

Marianne Matzo ◽

Kamal Hijjazi

Keyword(s):

Palliative Care ◽

Terminal Illness ◽

Income Level ◽

Stated Preferences ◽

Care Needs ◽

Attitudes And Behaviors ◽

Dying At Home ◽

Palliative Care Needs ◽

Insight Into ◽

At Home

Objective This study sought to document Oklahomans knowledge, attitudes, and behaviors regarding palliative care; this paper focuses on subjects stated preferences for where they would choose to die. Design Quantitative study used a random state-wide telephone sample of Oklahoma residents. Subjects Data from 804 residents in the State of Oklahoma between November and December (2005). Results An overwhelming majority of the respondents (80%) reported preference to die at home in the event that they suffer a terminal illness. The proportion of respondents under the age of 65 who preferred to die at home (80.9%) was slightly higher than those aged 65 and over (74.8%). Also, while 81.4% of the female respondents reported preference for dying at home, 75.8% of the male respondents shared such preference (P < 0.05). More married respondents (82.7%) than non-married respondents (74.7%) reported preference for dying at home (P < 0.01). A significant association (P < 0.05) between income level and preference for dying at home was noted. While 84.3% of those with income level at $21,000 or more reported reference for dying at home, 76.4% of those with income below $21,000 reported the same preference. Conclusions This paper offers insight into factors that influence Oklahoman's stated preferences for site of death that can assist the statewide agenda in the planning and provision of palliative care. This information can be adapted in other states or countries to determine palliative care needs.

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Needs of patient with advanced stages of cancer in a Thai community

Journal of Health Research ◽

10.1108/jhr-08-2018-040 ◽

2018 ◽

Vol 32 (5) ◽

pp. 342-351

Author(s):

Panita Krongyuth ◽

Pimpan Silpasuwan ◽

Chukiat Viwatwongkasem ◽

Cathy Campbell

Keyword(s):

Palliative Care ◽

Content Analysis ◽

Pain Management ◽

Care Providers ◽

Care Needs ◽

Open Communication ◽

Content Type ◽

Advanced Stages ◽

Palliative Care Needs ◽

At Home

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.

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“I needed someone to hold my hand”: Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.04.168 ◽

2020 ◽

Vol 60 (1) ◽

pp. 269-270

Author(s):

Krista Harrison ◽

Sarah Garrett ◽

Alissa Bernstein ◽

Georges Naasan ◽

Christine Ritchie

Keyword(s):

Palliative Care ◽

Care Needs ◽

People With Dementia ◽

Palliative Care Needs ◽

At Home

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Symptom Burden and Palliative Care Needs Among High-Risk Veterans With Multimorbidity

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2019.02.011 ◽

2019 ◽

Vol 57 (5) ◽

pp. 880-889 ◽

Cited By ~ 4

Author(s):

Lynn F. Reinke ◽

Elizabeth K. Vig ◽

Erica V. Tartaglione ◽

Peter Rise ◽

David H. Au

Keyword(s):

Palliative Care ◽

High Risk ◽

Symptom Burden ◽

Care Needs ◽

Palliative Care Needs

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The Role of Palliative Care in Oncology

Seminars in Interventional Radiology ◽

10.1055/s-0037-1608702 ◽

2017 ◽

Vol 34 (04) ◽

pp. 307-312 ◽

Cited By ~ 1

Author(s):

Rajiv Agarwal ◽

Andrew Epstein

Keyword(s):

Palliative Care ◽

Symptom Burden ◽

Well Being ◽

Care Needs ◽

Patients With Cancer ◽

Living With Cancer ◽

Palliative Care Needs ◽

Shed Light

AbstractPalliative care is a powerful adjunct to oncology that adds distinct value to the physical, mental, and psychosocial well-being of patients living with cancer. Its expanding role and integration with standard oncologic care has proven clinical benefit, as the practice of palliative care can help alleviate symptom burden, enhance illness and prognostic understanding, and improve both the quality of life and overall survival for patients. The primary aim of this review article is to highlight the significant interplay between palliative care and oncology and, in doing so, shed light on the areas for improvement and modern challenges that exist to meet the complex palliative care needs of patients with cancer.

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