Differences in palliative care quality between patients with cancer, patients with organ failure and frail patients: A study based on measurements with the Consumer Quality Index Palliative Care for bereaved relatives

ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians’ views on identifying and disclosing the last phase of life of patients with different illness trajectories.MethodsData from two focus groups were analysed using thematic analysis with a phenomenological approach.ResultsFifteen medical specialists and general practitioners participated. Participants thought prediction of patients’ last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants’ reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician–patient relationship, or a lack of time or availability of palliative care services.ConclusionsPhysicians consider the assessment of patients’ last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician–patient relationship, and lack of time or palliative care services. Future studies should examine patients’ preferences for those discussions.

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Using a supportive care framework to understand and improve palliative care among cancer patients in Africa

Palliative & Supportive Care ◽

10.1017/s1478951515000796 ◽

2015 ◽

Vol 14 (3) ◽

pp. 284-301 ◽

Cited By ~ 4

Author(s):

David S. Busolo ◽

Roberta L. Woodgate

Keyword(s):

Palliative Care ◽

Supportive Care ◽

Cancer Patients ◽

Care Needs ◽

African Countries ◽

Research Education ◽

Patients With Cancer ◽

Care Services ◽

Incidence And Mortality ◽

Palliative Care Services

ABSTRACTObjective:Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement.Method:The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework.Results:Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care.Significance of Results:Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

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Inpatients with neurologic disease referred for palliative care consultation

Neurology ◽

10.1212/wnl.0000000000007364 ◽

2019 ◽

Vol 92 (17) ◽

pp. e1975-e1981 ◽

Cited By ~ 5

Author(s):

Breana L. Taylor ◽

David L. O'Riordan ◽

Steven Z. Pantilat ◽

Claire J. Creutzfeldt

Keyword(s):

Palliative Care ◽

Odds Ratio ◽

Primary Diagnosis ◽

Care Quality ◽

Care Planning ◽

Neurologic Disease ◽

Discharge Disposition ◽

Patients With Cancer ◽

Outcomes Of Care ◽

Palliative Care Consultation

ObjectivesTo compare characteristics and needs of inpatients with neurologic disease to those with cancer referred for palliative care (PC) consultation.MethodsThis prospective cohort study used data collected by the Palliative Care Quality Network from January 2013 until December 2016. We compared demographics, reasons for consultation, discharge disposition, Palliative Performance Scale (PPS) score, and outcomes of care among patients with a primary diagnosis of neurologic disease vs cancer.ResultsThe most common reason for PC consultation in all patients was assistance with goals of care and advanced care planning. PC consultation was less often requested for pain and symptom management in patients with neurologic disease compared to patients with cancer (13.7% vs 43%, odds ratio 0.3) and more often for assistance with transition to comfort measures only and withdrawal of life-sustaining treatment (19.1% vs 7.1%, odds ratio 1.3). Patients with cancer had higher PPS scores (42.1% vs 23.4%) and were more likely to be discharged home from the hospital, while patients with neurologic disease were more likely to die in hospital.ConclusionsPatients with neurologic disease as a reason for PC consultation are more in need of end-of-life care planning and more likely to die in the hospital than those with cancer, suggesting that targeted approaches may best address the needs of each patient population. Our results can direct further research and education in neuropalliative care.

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The use of quality indicators (QIs) to evaluate the oncologic care in CCCN: a systematic review

European Journal of Public Health ◽

10.1093/eurpub/ckz185.278 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

R A Cocchiara ◽

A Mannocci ◽

S Cianfanelli ◽

C Sestili ◽

V D’Egidio ◽

...

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Cancer Patients ◽

Quality Indicators ◽

Clinical Care ◽

Integrated Approach ◽

Care Quality ◽

Process Of Care ◽

Oncological Patients ◽

Abstract Screening

Abstract Due to the increase of life expectancy for cancer patients, it has become necessary to implement complete and economically sustainable clinical care pathways that integrate different professional competences. The Comprehensive Cancer Care Network (CCCN) model consists of multiple specialized structures that cooperate for cancer patients care. Quality Indicators (QIs) represent valid and reliable tools of evaluation that allow a standardized comparison among different structures. The aim of this systematic review was to highlight a wide and complete description of the implemented QIs within the CCCNs and to identify and analyze methodologies used for the development of QIs. The literature was performed investigating two databases (PubMed and Scopus) and the search identified 7342 studies. After duplicate removal, title and abstract screening, and full text evaluation, 46 studies were included in the study. Most QIs were implemented in USA, Germany and Italy where the CCCN approach seems to be well defined. Eighty -two QIs concerned diagnosis, 260 concerned treatment, 7 concerned prevention, 29 about follow up, 71 about palliative care, 12 concerned rehabilitation and 7 research. The majority of the identified QIs belonged to the process domain, followed by the structure ones. Excluding QIs related to the management of cancer in general, the most represented organs resulted breast, colorectum and lung. Overall, it can be stated that the most represented categories of QIs concerned diagnosis and treatment. Furthermore, also the palliative care domain appeared very represented. Regarding the methodology of the QIs development, a consensus approach among experts and the Delphi method were the most frequently used methodologies. Only a few studies included the participation of patients for the implementation of the QIs. This systematic review provides a synthesis of existing QIs related to the setting of integrated oncological care Key messages The CCCN has been recognized as an ideal model for structuring the process of care that guarantees a complete and integrated approach for the management of oncological patients. Quality Indicators represent valid and reliable tools that should be used to perform a standardized comparison among different healthcare systems and to guarantee a homogeneous quality of care.

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The glimmering embers: Experiences of hope among cancer patients in palliative home care

Palliative & Supportive Care ◽

10.1017/s1478951510000532 ◽

2011 ◽

Vol 9 (1) ◽

pp. 43-54 ◽

Cited By ~ 6

Author(s):

Louise Olsson ◽

Gunnel Östlund ◽

Peter Strang ◽

Eva Jeppsson Grassman ◽

Maria Friedrichsen

Keyword(s):

Palliative Care ◽

Home Care ◽

Cancer Patients ◽

Comparative Method ◽

Healthcare Providers ◽

Palliative Home Care ◽

Patients With Cancer ◽

Core Category ◽

Sense Of Time ◽

The Creation

AbstractObjective:The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.Method:Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.Results:The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.Significance of results:The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

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Toward proven and prioritized quality measures: Which ASCO QOPI and other supportive care measures associate with improved quality of life (QOL)?

Journal of Clinical Oncology ◽

10.1200/jco.2012.30.34_suppl.165 ◽

2012 ◽

Vol 30 (34_suppl) ◽

pp. 165-165

Author(s):

Arif Kamal ◽

Janet Bull ◽

Amy Pickar Abernethy

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Supportive Care ◽

Cancer Patients ◽

Clinical Care ◽

Performance Status ◽

Quality Measures ◽

Well Being ◽

Care Quality ◽

The Impact

165 Background: An expanding array of quality measures, including the Quality Oncology Practice Initiative (QOPI) metrics, is being developed for oncology. To date, evidence demonstrating the impact of each metric on outcomes, ultimately aiding in prioritization of individual measures, remains immature. We investigated the relationship between conformance with quality measures and higher patient QOL among cancer patients receiving palliative care. Methods: A comprehensive systematic review of PUBMED and the gray literature (1995-2012) identifed all described supportive care quality measures. Patients receiving palliative care in 4 community-based programs were entered into a longitudinal quality registry; analyses focused on cancer patients registered between 6/08-10/11. To find predictors of higher QOL, conformance cohorts were examined for demographic variables, performance status (measured by palliative performance scale, PPS) and provider estimation of prognosis and included in univariate and multivariate regression. Results: The systematic review yielded 303 quality measures. Of these, 18 measures, representing components of the ASCO QOPI, Hospice PEACE, and Cancer-ASSIST measure sets, were evaluable using registry data. 460 cancer patients were included. 60% of patients had weeks to 6 months expected prognosis. Among QOPI measures, conformance with two measures was significantly associated with better QOL: constipation assessment at time of narcotic prescription and emotional well-being assessment (both p<0.05). Other significant findings were conformance with screening of symptoms at first visit (p=0.017), timely treatment for uncontrolled dyspnea (p=0.005), and assessment of fatigue (p=0.007). In a multivariate model predicting higher QOL, measures involving emotional well-being assessment (OR 1.60; p=0.026) and screening of symptoms (OR 1.74, p=0.008) remained significant. Conclusions: Clinical care that conforms to quality measures reflecting regular symptom and emotional assessment is significantly associated with better patient experiences (QOL) and should be prioritized in quality assessment efforts.

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Consumer Quality Index Palliative Care

PsycTESTS Dataset ◽

10.1037/t31607-000 ◽

2013 ◽

Author(s):

Susanne J. J. Claessen ◽

Anneke L. Francke ◽

Herman J. Sixma ◽

Anke J. E. de Veer ◽

Luc Deliens

Keyword(s):

Palliative Care ◽

Quality Index ◽

Consumer Quality Index

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Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

Acta Oncologica ◽

10.1080/0284186x.2018.1556802 ◽

2019 ◽

Vol 58 (4) ◽

pp. 432-438 ◽

Cited By ~ 3

Author(s):

Sixten Elmstedt ◽

Hanna Mogensen ◽

Dan-Erik Hallmans ◽

Björn Tavelin ◽

Staffan Lundström ◽

...

Keyword(s):

Palliative Care ◽

Cancer Patients ◽

Population Based ◽

Care Quality ◽

Population Based Study

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Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients

BMC Cancer ◽

10.1186/1471-2407-13-203 ◽

2013 ◽

Vol 13 (1) ◽

Cited By ~ 27

Author(s):

Judith C Booij ◽

Marieke Zegers ◽

Pauline MPJ Evers ◽

Michelle Hendriks ◽

Diana MJ Delnoij ◽

...

Keyword(s):

Cancer Patient ◽

Patient Care ◽

Cancer Patients ◽

Quality Index ◽

Consumer Quality Index ◽

Care Development

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Characteristics of Advance Care Planning in Patients With Cancer Referred to Palliative Care

JCO Oncology Practice ◽

10.1200/op.20.00657 ◽

2021 ◽

Vol 17 (2) ◽

pp. e94-e100

Author(s):

Callie M. Berkowitz ◽

Steven P. Wolf ◽

Jesse Troy ◽

Arif H. Kamal

Keyword(s):

Palliative Care ◽

Data Collection ◽

Advance Care Planning ◽

Care Quality ◽

Quality Data ◽

Care Planning ◽

Data Collection Tool ◽

Serious Illness ◽

Patients With Cancer ◽

Advance Care

PURPOSE: Advance care planning (ACP) is a process in which patients share their values, goals, and preferences regarding future medical care. ACP can improve care quality, yet may be challenging to address for patients with cancer. We sought to characterize key components of ACP in patients with cancer as compared with patients with noncancer serious illness referred to palliative care (PC). METHODS: We performed a retrospective cross-sectional analysis of initial outpatient PC visits from the Quality Data Collection Tool for PC database from 2015 to 2019. Quality Data Collection Tool is a web-based point-of-care specialty PC registry to track quality metrics. RESULTS: We analyzed 1,604 patients with cancer and 1,094 patients without cancer: 44% of patients were female, 87% were White, and 98% were non-Hispanic. The average age was 72.2 years (standard deviation [SD] 15.4). Patients with cancer were on average younger than patients without cancer (66.5 [SD: 13.9] v 80.5 [SD: 13.8]) and had a higher Palliative Performance Scale (PPS) (59.5 [SD: 22.4] v 33.4 [SD: 25.1]). In our unadjusted comparison, patients with cancer were less likely to be DNR/DNI (37% v 53%; P < .0001) and less likely to have an advance directive (53% v 73%; < .0001); rates of healthcare proxy identification were similar (92.8% v 94.5%; P = .10). These differences did not persist when we accounted for age, race, sex, and PPS, with age being the primary explanatory factor. CONCLUSION: Despite having serious illness meriting PC referral, many patients with cancer in our study lacked advance directives. This highlights both the important role of oncologists in facilitating ACP and the utility of PC playing a complementary role.

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