Operationalizing
            patient‐centered
            cancer care: A systematic review and synthesis of the qualitative literature on cancer patients' needs, values, and preferences

Purpose Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events. Patients and Methods In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something “went wrong” during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event. Results Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns. Conclusion Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.

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Strategies to embed palliative care into a culture of cancer care.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.e21678 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. e21678-e21678

Author(s):

Angela Marie Taber ◽

Susan F. Korber ◽

Edward Martin ◽

Anthony E. Mega

Keyword(s):

Palliative Care ◽

Health System ◽

Cancer Patients ◽

Cancer Care ◽

Medical Oncology ◽

National Study ◽

Claims Analysis ◽

Patient Centered ◽

Medicare Claims ◽

Multi Level

e21678 Background: In 2012, the 3 hospital Lifespan Health System launched a palliative care initiative. The hospitals and medical oncologists knew this was critical for patient centered and value-based cancer care, but recognized many barriers: physician practice patterns, lack of dedicated resources and systems, patient and family education gaps, and limited return on investment in the current environment. A multi-level inpatient and outpatient strategy was implemented and tracked over four years. Methods: External benchmarking data from a Medicare claims analysis of Vizient (academic health system consortium) member organizations and from ASCO QOPI data were used in the analysis. Internal data analysis included a study on symptom management for lung cancer patients, hospital reports on palliative care service utilization, ED visits and hospital admission trends for cancer patients. Multi-level interventions were employed: hospital investment in staff and systems, partnership with a community-based hospice and palliative care provider, a medical oncology physician champion with Board certification in palliative care, a palliative care inpatient consult service and daily ICU rounds, an oncology medical home, medical oncologist Saturday hours, electronic prompts for consults, and a cancer call triage center. Results: A Medicare claims analysis for 2012 to 2014 on cancer decedents with ICU stays in the last 30 days in the Vizient national study of health systems showed that Lifespan was at the 11th percentile, making them the 4th lowest (days in ICU) in performance (pre/post data requested). QOPI data on appropriate referrals to hospice or palliative care prior to death improved from 58% in 2010, which was below the QOPI benchmark of 61%, to 94% in 2016 which is above the QOPI benchmark of 74%. Other QOPI and hospital data will be included in the presentation. Conclusions: Palliative care, a crucial tool for the delivery of future cancer care, is challenging to implement effectively. This study shows that a hospital/medical oncology partnership can drive change to embed palliative care into the culture of cancer care and these strategies offer a roadmap for others to follow as they strive to offer patient centered and value-based cancer care.

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Pre-treatment expectations of patients with spinal metastases: what do we know and what can we learn from other disciplines? A systematic review of qualitative studies

BMC Cancer ◽

10.1186/s12885-020-07683-7 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

R. Gal ◽

D. Oostinga ◽

H. Wessels ◽

J. J. Verlaan ◽

R. Charest-Morin ◽

...

Keyword(s):

Systematic Review ◽

Cancer Patients ◽

Advanced Cancer ◽

Cancer Care ◽

Spinal Surgery ◽

Symptom Relief ◽

Spinal Metastases ◽

Advanced Cancer Patients ◽

Treatment Expectations ◽

Pre Treatment

Abstract Background Little is known about treatment expectations of patients with spinal metastases undergoing radiotherapy and/or surgery. Assuming that patients with spinal metastases share characteristics with patients who had spinal surgery for non-cancer related conditions and with advanced cancer patients, we performed a systematic review to summarize the literature on patient expectations regarding treatment outcomes of spinal surgery and advanced cancer care. Methods A comprehensive search was performed in MEDLINE, EMBASE and PsycINFO for studies between 2000 and sep-2019. Studies including adult patients (> 18 years), undergoing spinal surgery or receiving advanced cancer care, investigating patients’ pre-treatment expectations regarding treatment outcomes were included. Two independent reviewers screened titles, abstracts and full-texts, extracted data and assessed methodological quality. Results The search identified 7343 articles, of which 92 were selected for full-text review. For this review, 31 articles were included. Patients undergoing spinal surgery had overly optimistic expectations regarding pain and symptom relief, they underestimated the probability of functional disability, and overestimated the probability of (complete) recovery and return to work. Studies highlighted that patients feel not adequately prepared for surgery in terms of post-treatment expectations. Similarly, advanced cancer patients receiving palliative treatment often had overly optimistic expectations regarding their survival probability and cure rates. Conclusions Patients tend to have overly optimistic expectations regarding pain and symptom relief, recovery and prognosis following spinal surgery or advanced cancer care. Pretreatment consultation about the expected pain and symptom relief, recovery and prognosis may improve understanding of prognosis, and promote and manage expectations, which, in turn, may lead to better perceived outcomes. Trial registration PROSPERO registration number: CRD42020145151.

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Patient-Centered Approach to Develop the Patient’s Preferences for Prostate Cancer Care (PreProCare) Tool

MDM Policy & Practice ◽

10.1177/2381468319855375 ◽

2019 ◽

Vol 4 (1) ◽

pp. 238146831985537 ◽

Cited By ~ 1

Author(s):

Ravishankar Jayadevappa ◽

Sumedha Chhatre ◽

Joseph J. Gallo ◽

S. Bruce Malkowicz ◽

J. Sanford Schwartz ◽

...

Keyword(s):

Prostate Cancer ◽

Decision Making ◽

Focus Groups ◽

Cancer Patients ◽

Cancer Care ◽

Assessment Tool ◽

Preference Assessment ◽

Localized Prostate Cancer ◽

Advisory Group ◽

Patient Centered

Objectives. To describe the development of our Patient Preferences for Prostate Cancer Care (PreProCare) tool to aid patient-centered treatment decision among localized prostate cancer patients. Methods. We incorporated patient and provider experiences to develop a patient preference elicitation tool using adaptive conjoint analysis. Our patient-centered approach used systematic literature review, semistructured patient interviews, and provider focus groups to determine the treatment attributes most important for decision making. The resulting computer-based PreProCare tool was pilot tested in a clinical setting. Results. A systematic review of 56 articles published between 1995 and 2015 yielded survival, cancer recurrence, side effects, and complications as attributes of treatment options. We conducted one-on-one interviews with 50 prostate cancer survivors and 5 focus groups of providers. Patients reported anxiety, depression, treatment specifics, and caregiver burden as important for decision making. Providers identified clinical characteristics as important attribute. Input from stakeholders’ advisory group, physicians, and researchers helped finalize 15 attributes for our PreProCare preference assessment tool. Conclusion. The PreProCare tool was developed using a patient-centered approach and may be a feasible and acceptable preference clarification intervention for localized prostate cancer patients. The PreProCare tool may translate into higher participant engagement and self-efficacy, consistent with patients’ personal values.

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Australian Experiences of Out-of-Pocket Costs and Financial Burden Following a Cancer Diagnosis: A Systematic Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18052422 ◽

2021 ◽

Vol 18 (5) ◽

pp. 2422

Author(s):

Annie Bygrave ◽

Kate Whittaker ◽

Christine Paul ◽

Elizabeth A. Fradgley ◽

Megan Varlow ◽

...

Keyword(s):

Systematic Review ◽

Cancer Patients ◽

Low Income ◽

Cancer Care ◽

Financial Burden ◽

Secondary Outcome ◽

Cancer Type ◽

Increased Risk ◽

The Impact ◽

Out Of Pocket Costs

(1) Background: This systematic review was conducted to identify cancer patient experiences, and the impact of out-of-pocket costs and financial burden in Australia. (2) Methods: A systematic review, following the Preferring Reporting Items for Systematic Reviews and Meta-Analyses, was conducted. Cumulative Index of Nursing and Allied Health Literature and PubMed were searched. The primary outcome was financial burden among cancer patients and their families in Australia. The secondary outcome was out-of-pocket costs associated with cancer care and treatment within the population sample, and the impact of financial burden. (3) Results: Nineteen studies were included, covering more than 70,000 Australians affected by cancer. Out-of-pocket costs varied by cancer type and ranged from an average of AUD 977 for breast cancer and lymphoedema patients to AUD 11,077 for prostate cancer patients. Younger aged patients (≤65 years), Aboriginal and Torres Strait Islander people, people in rural and/or remote areas, households with low income, those who were unemployed and people with private health insurance were at increased risk of experiencing out-of-pocket costs, financial burden or a combination of both. (4) Conclusions: Australians diagnosed with cancer frequently experience financial burden, and the health and financial consequences are significant. Focusing efforts on the costs of care and options about where to have care within the context of informed decisions about cancer care is necessary.

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The Development and Application of Drama-Combined Nursing Educational Content for Cancer Care

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18189891 ◽

2021 ◽

Vol 18 (18) ◽

pp. 9891

Author(s):

Eunyoung E. Suh ◽

Jeonghee Ahn ◽

Jiyoung Kang ◽

Yoonhee Seok

Keyword(s):

Nursing Education ◽

Nursing Students ◽

Cancer Patients ◽

Cancer Care ◽

Role Model ◽

Breast Cancer Patients ◽

Patient Centered ◽

Cancer Statistics ◽

Lung Cancer Patients ◽

Centered Care

With the recent increase in the number of cancer patients, it is important to educate nursing students using pedagogical techniques that nurture understanding and empathy for cancer patients. This study examined nursing students’ experiences caring for cancer patients after receiving drama-combined nursing education for cancer care (DCC), which consisted of three elements: lectures, dramatic scenarios, and debriefing. The lectures dealt with cancer statistics, diseases, and nursing, and the dramatic scenarios depicted both breast cancer patients and lung cancer patients. Sixty-seven junior-year nursing students attended a 90 min DCC session developed by the authors. Focus group interviews were conducted to explore students’ educational experiences, and the following three themes were derived using the thematic analysis method: ‘understanding the lives of patients with severe diseases and their families’, ‘seeing a nursing role model provide patient-centered care’, and ‘projecting an image of oneself as a future nurse’. Using drama in nursing education for cancer patients provided an opportunity for students to imagine the clinical experiences of cancer patients, helping them to understand patients’ points of view and reflect on their self-images as future nurses. The DCC developed for nursing students in this study is a promising way to deliver distinctive and meaningful learning experiences.

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PS1-22: A Systematic Review of Web-Based Cancer Prognostic Calculators: Can They Support Patient-Centered Communication with Cancer Patients?

Clinical Medicine & Research ◽

10.3121/cmr.2013.1176.ps1-22 ◽

2013 ◽

Vol 11 (3) ◽

pp. 128-128

Author(s):

B. Rabin ◽

B. Gaglio ◽

T. Sanders ◽

L. Nekhlyudov ◽

S. Bull ◽

...

Keyword(s):

Systematic Review ◽

Cancer Patients ◽

Patient Centered ◽

Web Based

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Cancer patients’ experiences of using mistletoe (Viscum album): A systematic review of the qualitative literature

European Journal of Integrative Medicine ◽

10.1016/j.eujim.2013.08.014 ◽

2013 ◽

Vol 5 (6) ◽

pp. 576-577 ◽

Cited By ~ 1

Author(s):

Maggie Evans ◽

Susan Bryant ◽

Alyson Huntley ◽

Gene Feder

Keyword(s):

Systematic Review ◽

Cancer Patients ◽

Viscum Album ◽

Qualitative Literature

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Interventions for Maximizing Quality Communication in Cancer Care: A Systematic Review of Systematic Reviews

Journal of Global Oncology ◽

10.1200/jgo.18.48000 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 99s-99s ◽

Cited By ~ 2

Author(s):

S. Licqurish ◽

L. Pattuwage ◽

S. Chima ◽

A. Qama ◽

J. Emery

Keyword(s):

Systematic Review ◽

Health Services ◽

Cancer Patients ◽

Systematic Reviews ◽

Cancer Care ◽

Effective Communication ◽

Cochrane Library ◽

Cancer Information ◽

Evidence Based ◽

Communication Interventions

Background: Clinician communication has shown to influence cancer patients' perception of care and satisfaction. Effective communication is therefore a critical aspect of patient-centered care. Health services should be implementing evidence-based communication interventions to improve the provision of cancer care to patients. Aim: We conducted a systematic review of the literature with the aim to identify effective communication strategies and/or interventions to improve clinician-patient communication. Methods: Five electronic databases (MEDLINE, Embase, PsycINFO, the Cochrane Library and CINAHL Plus) were searched for relevant citations from 2005 until October 2015 using search terms related to “cancer”, “information” and “communication”. Titles and abstracts were evaluated by two independent reviewers. Selected full text publications were assessed against the eligibility criteria. Quality was assessed using the AMSTAR guidelines and GRADE. Due to the enormity of the literature, only systematic reviews were included. Results: The database search yielded 2934 unique citations, of which 198 full texts were retrieved. After applying the inclusion and exclusion criteria, 41 systematic reviews were included. The included studies were broadly categorized under six major themes: e-health, technological and telephone-based interventions (n=9); patient education and tools (n=5); communication training (n=9); education interventions to improve cancer pain (n=6); tools to facilitate patients' participation in care/decision making (n=8); nurse delivered interventions (n=6). Conclusion: There are an enormous number of studies of communication interventions for cancer patients. The quality of the evidence to support some of these interventions is low; whereas other interventions have stronger evidence of effectiveness. Therefore, health services and clinicians should carefully consider which interventions they choose to implement. The recommendations from this review will assist clinicians and health services to choose evidence-based interventions which can improve care provision and/or patient outcomes.

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Effectiveness of Nurse-Led Case Management in Cancer Care: Systematic Review

Clinical Nursing Research ◽

10.1177/1054773818773285 ◽

2018 ◽

Vol 28 (8) ◽

pp. 968-991 ◽

Cited By ~ 10

Author(s):

Jee Young Joo ◽

Megan F. Liu

Keyword(s):

Systematic Review ◽

Health Care ◽

Case Management ◽

Health Care Costs ◽

Cancer Care ◽

Quality Care ◽

Experimental Studies ◽

Patient Centered ◽

Hospital Access ◽

Care Costs

Cancer survivors need accountable, patient-centered and lifelong care. Case management has been shown effective at providing quality care and at reducing both hospital access and health care costs. However, how effective case management in cancer care is to date unclear. This systematic review examines recent evidence of the effectiveness of nurse-led case management in adults with cancer. The Cochrane processes and PRISMA statements guided this systematic review. The methodological risk of bias was assessed. From four electronic databases, nine experimental studies published from 2008 to 2017 were retrieved. Synthesized results show positive case management effectively improved patients’ quality of life and significantly reduced hospital readmission rates. However, there were mixed results of health care costs and other hospital access outcomes. There is some evidence that nurse-led case management is effective in cancer care. Further research applying rigorous design to large populations of cancer patients is recommended.

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