No difference in effects of ‘PACE steps to success’ palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial

Abstract Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. Methods Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). Results At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (− 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (− 0.6; p = 0.741), non-advanced and without dementia (− 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). Conclusions The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents’ comfort, this program needs further development. Trial registration ISRCTN, ISRCTN14741671. Registered 8 July 2015 – Retrospectively registered.

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No Difference in Effects of ‘PACE Steps to Success’ Palliative Care Program for Nursing Home Residents With and Without Dementia: A Pre-Planned Subgroup Analysis of the Seven-Country PACE Trial

10.21203/rs.3.rs-112865/v1 ◽

2020 ◽

Author(s):

Rose Miranda ◽

Tinne Smets ◽

Nele Van Den Noortgate ◽

Jenny T. van der Steen ◽

Luc Deliens ◽

...

Keyword(s):

Palliative Care ◽

Nursing Home ◽

Quality Of Care ◽

Nursing Homes ◽

Care Program ◽

Improve Quality ◽

Palliative Care Program ◽

Advanced Dementia ◽

Disease Specific

Abstract Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia.Methods Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous four months and had advanced (n=104 to 177), non-advanced (n=110 to 167) or no dementia (n=137 to 157). The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome).Results We found no subgroup differences on comfort, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value=0.177), non-advanced versus without dementia (2.7; p=0.092), and advanced versus non-advanced dementia (-0.6; p=0.698); or on quality of care and dying, comparing advanced and without dementia (-0.6; p=0.741), non-advanced and without dementia (-1.5; p=0.428), and advanced and non-advanced dementia (0.9; p=0.632).Conclusions The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents’ comfort, this program needs further development.Trial registration. ISRCTN, ISRCTN14741671. Registered 8 July 2015 – Retrospectively registered.http://www.isrctn.com/ISRCTN14741671

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Being the next of kin of an older person living in a nursing home: an interview study about quality of life

BMC Geriatrics ◽

10.1186/s12877-019-1343-4 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 2

Author(s):

Helena Rosén ◽

Lina Behm ◽

Birgitta Wallerstedt ◽

Gerd Ahlström

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Nursing Home ◽

Quality Of Care ◽

Nursing Homes ◽

Home Care ◽

Interview Study ◽

Older Person ◽

Next Of Kin

Abstract Background The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care. Methods This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes. Results The next of kin’s experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple’slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person’s vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin. Conclusions The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person’s health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin. Trial registration NCT02708498, 15 March 2016.

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Analyzing Nursing Home Complaints: From Substantiated Allegation to Deficiency Citations

Innovation in Aging ◽

10.1093/geroni/igaa057.271 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 82-83

Author(s):

Kallol Kumar Bhattacharyya ◽

Lindsay Peterson ◽

John Bowblis ◽

Kathryn Hyer

Keyword(s):

Nursing Home ◽

Quality Of Care ◽

Nursing Homes ◽

Staff Training ◽

Policy And Practice ◽

Abuse And Neglect ◽

The Relationship ◽

Investigation Process

Abstract Complaints provide important information to consumers about nursing homes (NHs). Complaints that are substantiated often lead to an investigation and potentially a deficiency citation. The purpose of this study is to understand the relationship between substantiated complaints and deficiency citations. Because a complaint may contain multiple allegations, and the data do not identify which allegation(s) lead to a complaint’s substantiation, we identified all substantiated single allegation complaints for NHs in 2017. Our data were drawn from federally collected NH complaint and inspection records. Among the 369 substantiated single-allegation complaints, we found most were categorized as quality of care (31.7%), resident abuse (17.3%), or resident neglect (14.1%). Of the deficiency citations resulting from complaints in our sample, 27.9% were categorized as quality of care and 19.5% were in the category of resident behavior and facility practices, which includes abuse and neglect. While two-thirds (N=239) of the substantiated complaints generated from 1 to 19 deficiency citations, nearly one third had no citations. Surprisingly, 28% of substantiated abuse and neglect allegations resulted in no deficiency citations. More surprisingly, a fifth of complaints that were categorized as “immediate jeopardy” at intake did not result in any deficiency citations. We also found a number of asymmetries in the allegation categories suggesting different processes by Centers for Medicare and Medicaid Services (CMS) region. These results suggest that the compliant investigation process warrants further investigation. Other policy and practice implications, including the need for better and more uniform investigation processes and staff training, will be discussed.

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Development a Palliative Care Program for Colorectal Cancer Patients: A Mixed Methods Protocol study (Preprint)

10.2196/preprints.34510 ◽

2021 ◽

Author(s):

Masoumeh Masoumy ◽

Masoud Bahrami ◽

Alireza sadeghi ◽

Rohallah Mosavizadeh

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Palliative Care ◽

Cancer Patients ◽

Cultural Context ◽

Care Program ◽

Future Research ◽

Palliative Care Program ◽

Colorectal Cancer Patients

BACKGROUND Introduction: Colorectal cancer (CRC) is the third most common cancer in Iranian men and the second in Iranian women and it is a serious health problem in the Iran health system. OBJECTIVE Objective: The purpose is to develop a holistic palliative care program in order to improve the health and quality of life of colorectal cancer patients. METHODS Methods: This is an exploratory mixed methods study which will be conducted using a sequential qualitative-quantitative design (QUAL quan) consists of four sequential steps using the approach proposed by Ewles & Sminett to develop the program. In the first step, a qualitative study (semi-structured interview), the researcher discovers the needs of colorectal cancer patients from the perspective of patients, family members and care providers. In the second step, the literature review will be performed with the aim of confirming and completing the discovering new needs. In the third step, a initial draft of the palliative care program will be developed based on data extracted from qualitative study and literature review, experts’ panel opinions. In the fourth step, according to the opinions of the panel of experts, the part of the developed program will be implemented as quasi-experimental intervention and the effect of intervention on quality of life will be evaluated. RESULTS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion. CONCLUSIONS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion.

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NURSES ON THE MOVE: AN APPROACH TO IMPROVE QUALITY OF CARE IN NURSING HOMES

The Gerontologist ◽

10.1093/geront/gnv515.02 ◽

2015 ◽

Vol 55 (Suppl_2) ◽

pp. 142-142

Keyword(s):

Quality Of Care ◽

Nursing Homes ◽

Improve Quality

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A model of early integration of palliative care into oncology care for patients with metastatic colorectal cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.142 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 142-142

Author(s):

Carling Jade Ursem ◽

Laura Cantino ◽

Ingrid Maravilla ◽

Nicole Thompson ◽

Chloe Evelyn Atreya ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Palliative Care ◽

Care Program ◽

Palliative Care Program ◽

Care Needs ◽

Control Phase ◽

Psychosocial Concerns ◽

Palliative Care Needs

142 Background: Current NCCN guidelines recommend that “institutions should develop processes for integrating palliative care into cancer care.” However, it is not clear what the best method is for implementing this integrated care. Palliative care needs specific to patients with metastatic colorectal cancer (mCRC) and best practices for integration of outpatient palliative and oncologic care in mCRC are not well understood. Methods: We conducted a pre-post prospective cohort study to evaluate the palliative care needs of mCRC patients and the implementation of an integrated palliative care program. In both the control and implementation phase, we enrolled patients with mCRC within 90 days of diagnosis or establishing care for mCRC at UCSF. Patients were surveyed regarding their symptoms, quality of life, psychosocial concerns, functional status and understanding of prognosis. During the control phase, patients received usual oncologic care. Based on survey results from the control phase, we designed a palliative care program to target the needs identified. In the intervention phase, patients are receiving longitudinal palliative care integrated into their usual cancer care. Results: The 30 patients in the control phase reported anorexia, fatigue and poor quality of life as their most common symptoms. Common psychosocial challenges were transportation, insurance/financial and difficulty with treatment decisions. Patients also had unrealistic expectations of their prognosis. In order to improve these identified issues, we designed and implemented an integrated palliative care program that includes weekly multidisciplinary meetings with oncology and palliative care providers and proactive palliative care visits from the time of diagnosis, which occur within the oncology clinic at a time that coincides with oncology visits. Conclusions: Physical symptoms, psychosocial concerns and poor prognostic awareness are common among patients with mCRC. We have implemented an integrated palliative care program to address these needs. Evaluation of the effectiveness of this intervention is ongoing.

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Validation of the Spanish Version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a Home-Based Cancer Palliative Care Program and Development of the QODD-ESP-12

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2017.02.005 ◽

2017 ◽

Vol 53 (6) ◽

pp. 1042-1049.e3 ◽

Cited By ~ 9

Author(s):

Pedro E. Pérez-Cruz ◽

Oslando Padilla Pérez ◽

Pilar Bonati ◽

Oliva Thomsen Parisi ◽

Laura Tupper Satt ◽

...

Keyword(s):

Palliative Care ◽

Care Program ◽

Spanish Version ◽

Palliative Care Program ◽

Quality Of Dying ◽

Home Based

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A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study

International Psychogeriatrics ◽

10.1017/s1041610217000977 ◽

2017 ◽

Vol 29 (10) ◽

pp. 1713-1722 ◽

Cited By ~ 9

Author(s):

Tim Luckett ◽

Lynnette Chenoweth ◽

Jane Phillips ◽

Deborah Brooks ◽

Janet Cook ◽

...

Keyword(s):

Palliative Care ◽

Nursing Home ◽

Nursing Homes ◽

Health Professionals ◽

Business Models ◽

Care Planning ◽

Advanced Dementia ◽

Factors Influencing ◽

Case Conferences ◽

Family Case

ABSTRACTBackground:Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation.Method:Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach.Results:Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback.Conclusion:The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.

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