Monitoring of Palliative Care Needs in Specialized Palliative Home Care Using the Electronic Version of the Integrated Palliative Care Outcome Scale

AbstractObjectiveImplementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals’ experiences of the use of IPOS in acute care settings.MethodData were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.ResultA total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals’ participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: “IPOS acting as a facilitator” and “barriers to the use of IPOS.” The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals’ feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.Significance of resultsWe found an association between healthcare professionals’ participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

Monitoring of Palliative Care Symptoms and Concerns in Specialized Palliative Home Care Using an Electronic Version of the Integrated Palliative care Outcome Scale (Palli-MONITOR): protocol for a mixed-methods study

BMJ Open ◽

10.1136/bmjopen-2020-042266 ◽

2021 ◽

Vol 11 (6) ◽

pp. e042266

Author(s):

Anna Bolzani ◽

Christina Ramsenthaler ◽

Farina Hodiamont ◽

Isabel Sophie Burner-Fritsch ◽

Claudia Bausewein

Keyword(s):

Experimental Study ◽

Palliative Care ◽

Quantitative Analysis ◽

Phase 1 ◽

Electronic Version ◽

Phase 2 ◽

Palliative Home Care ◽

Palliative Care Outcome Scale ◽

Quasi Experimental ◽

Care Outcome

IntroductionOver the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient’s perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial.Methods and analysisPalli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden.Ethics and disseminationApproval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results.Trial registration numberNCT03879668.

Family physicians supporting patients with palliative care needs within the Patient Medical Home in the community: An Appreciative Inquiry qualitative study

10.1101/2021.01.04.21249226 ◽

2021 ◽

Author(s):

Amy Tan ◽

Ronald Spice ◽

Aynharan Sinnarajah

Keyword(s):

Palliative Care ◽

Home Care ◽

Focus Groups ◽

Appreciative Inquiry ◽

Family Physicians ◽

Care Providers ◽

Care Needs ◽

Palliative Home Care ◽

Essential Components ◽

Palliative Care Needs

ABSTRACTObjectivesCanadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared to other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients.DesignAppreciative Inquiry (AI) methodology with individual interviews. Interview transcripts were analyzed iteratively for emerging themes and used to develop “possibility statements” to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the “destiny” state as per AI methods.SettingFamily physicians, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, Canada.Participants9 females and 9 males FPs (range of practice years 2-42) in interviews; 8 bereaved caregivers, 1 patient, 26 Palliative Home Care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent.ResultsThe identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The family physician/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality.ConclusionsKey areas were identified for how the patient’s team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP-patient longitudinal relationship.Strengths and limitations of this studyThis study uses Appreciative Inquiry qualitative methods to identify the essential components required to best support patients and families with palliative care needs in their communities.Multiple perspectives recruited including: community-based family physicians, palliative home care clinicians, patients, and bereaved caregivers.Analysis was focused on the family physicians’ interviews to derive “possibility statements” and used to frame the focus groups with the other groups of participants.Generalisability may be limited due to the lack of diversity in participants recruited for the patients and bereaved caregivers in terms of ethnicity, age, and gender.Patients and caregivers may have been reluctant to volunteer for this study as it involved discussing palliative care.

Family physicians supporting patients with palliative care needs within the patient medical home in the community: an appreciative inquiry study

BMJ Open ◽

10.1136/bmjopen-2021-048667 ◽

2021 ◽

Vol 11 (12) ◽

pp. e048667

Author(s):

Amy Tan ◽

Ronald Spice ◽

Aynharan Sinnarajah

Keyword(s):

Palliative Care ◽

Home Care ◽

Focus Groups ◽

Conceptual Framework ◽

Appreciative Inquiry ◽

Family Physicians ◽

Care Providers ◽

Care Needs ◽

Palliative Home Care ◽

Palliative Care Needs

ObjectivesCanadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared with other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients.DesignAppreciative inquiry (AI) methodology with individual interviews. Interview transcripts were analysed iteratively for emerging themes and used to develop ‘possibility statements’ to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the ‘destiny’ state as per AI methods.SettingFPs, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, AB, Canada.Participants9 females and 9 males FPs (range of practice years 2–42) in interviews; 8 bereaved caregivers, 1 patient, 26 palliative home care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent.ResultsThe identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The FP/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality.ConclusionsKey areas were identified for how the patient’s team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP–patient longitudinal relationship.

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

JMIR Research Protocols ◽

10.2196/13933 ◽

2019 ◽

Vol 8 (11) ◽

pp. e13933 ◽

Cited By ~ 1

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. International Registered Report Identifier (IRRID) PRR1-10.2196/13933

Utility of the integrated palliative care outcome scale (IPOS): a cross-sectional study in hospitalised patients with heart failure

European Journal of Cardiovascular Nursing ◽

10.1177/1474515120919386 ◽

2020 ◽

pp. 147451512091938 ◽

Cited By ~ 3

Author(s):

Carmen Roch ◽

Johanna Palzer ◽

Teresa Zetzl ◽

Stefan Störk ◽

Stefan Frantz ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Cross Sectional Study ◽

Emotional Symptoms ◽

Care Needs ◽

Cross Sectional ◽

Palliative Care Outcome Scale ◽

Hospitalised Patients ◽

Patients With Heart Failure ◽

Care Outcome

Aim The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure. Methods and results This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs. Conclusion The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.